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The episode of ‘Wild Card – Whose Shoes?’ has been created as part of Podcasthon.

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AHSN Innovation Network report on award-winning Whose Shoes

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AHSN Innovation Network report on award-winning Whose Shoes

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Gill Phillips wins Innovation Champion  Award!

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The 'Whose Shoes?®' approach, created by Gill Phillips, is an engaging approach to coproduction, used in over 80 NHS trusts, universities and more.

Overview

Whose Shoes is equally powerful in all areas of quality improvement as it focuses on people and what matters to them, rather than defining people by a medical diagnosis or set of circumstances. It brings humanity back into view, alongside process and systems.

Google 'Whose Shoes?' and you will find a flood of passionate people making positive change across many topics, ranging from dementia care to maternity services; social prescribing to cancer services.

The approach combines an engaging board game, using crowdsourced scenarios and poems, and an influential social media presence, connecting people nationally and internationally: changemakers who are stronger together. Check out @WhoseShoes.

The poems are highly creative - quirky, thought-provoking and very powerful. They spark many 'lemon lightbulb moments' as, for example. healthcare professionals realise the impact of language or power dynamics which may never have occurred to them previously.

The maternity work in the West Midlands is a microcosm of the wider work. Gill partnered with the West Midlands Clinical Maternity and Neonatal Network to run a series of 19 Whose Shoes workshops across the West Midlands -improving both maternity services and perinatal mental health services.

Together with visual recording associates at New Possibilities and strong technical support, Gill has developed #VirtualWhoseShoes which has enabled the conversations to keep going during the pandemic.

Gill facilitated an engaging all-day Zoom workshop with parents and staff at Shrewsbury and Telford NHS, keeping the conversations going during Covid-19, helping build relationships and make progress in the light of the Ockenden investigation. Gill ran an equivalent session with East Kent maternity team and is helping these two teams connect at all levels - imaginative peer support for bereavement midwives and Continuity of Carer leads.

The common theme is people feeling empowered to take action, without asking for permission, cutting through silos and hierarchies, bringing everybody together as equals.

Co-production in practice is exactly what Whose Shoes represents, and I am so proud of you Gill and of course your small extended team of facilitators and graphic recorders. I am yet to use, play or see anything that tops (or even comes close to) Whose Shoes for co-producing services that people genuinely need and want.

Alison Waters, Programme Manager at Kent Surrey Sussex Academic Health Science Network

How did the Innovation Exchange help?

"Winning the Meridian Innovation and Improvement champion award through the West Midlands AHSN is a great boost, alongside our NHS England, HSJ and ICiPS recognition. It is exciting that an approach which does not set out to tick boxes - is indeed now ticking boxes at a high level. Thank you!" Gill Phillips

Impact & Outcomes

We have been quite maverick in our approach to collecting 'evidence'.

We deliberately do not count pledges made at our workshops but are more interested in the results, some of which take months or even years to come to fruition - for example, the Whose Shoes approach to coproduction was used particularly powerfully in Liverpool (across Alder Hey Hospital and Liverpool Women's Hospital) and proving that they were listening to and working with all stakeholders was a key factor in a successful business case to build a new neonatal unit.

We typically use videos and Steller stories to share success stories. These are being collated on our website www.nutshellcomms.co.uk but the 'Overview of Whose Shoes' Padlet shows many of the wonderful outcomes and ripples: https://padlet.com/WhoseShoes/overview

In addition to the booklets of case studies (see above) this blog 'What have the Romans ever done for us?' dips into some of the key outcomes of #MatExp Whose Shoes - but much more has happened since this was written in 2018:
What have the Romans ever done for us? - #MatExp - Real evidence! As at end 2018 - Maternity Experience

London Ambulance Service have worked with Gill Phillips to run workshops looking at the role of coproduction in emergency services in three different areas: maternity, mental health and end of life care. Each has led to real action; LAS were either winners or highly commended for HSJ awards in all three areas (2020).

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Whose Shoes - an innovative approach to coproduction

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The 'Whose Shoes?®' approach, created by Gill Phillips, is an engaging approach to coproduction, used in over 80 NHS trusts, universities and more. Whose Shoes is equally powerful in all areas of quality improvement as it focuses on people and what matters to them, rather than defining people by a medical diagnosis or set of circumstances.

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'Follow' if you don't want FOMO!

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Wild Card - Whose Shoes?

Wild Card - Whose Shoes? - Trailer

Gill Phillips @WhoseShoes

Wild Card. I couldn't believe it when I was announced as an #HSJ100 wild card.

Who is it that the new Chief Executive of the NHS should be listening to? Apparently it is me!

And then I thought about it. I have a fantastic network and could be a catalyst for people whose voices really need to be heard.

How could I do that? I could set up a podcast series!

My name is Gill Phillips and I'm the creator of Whose Shoes, a popular approach to co-production.

I'll be chatting with people from all sorts of different perspectives; walking in their shoes.

If you are interested in the future of healthcare and like to hear what other people think, or perhaps even contribute at some point, 'Whose Shoes Wild Card' is for you!

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Wild Card - Whose Shoes? - Trailer - Wild Card - Whose Shoes?

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Wild Card. I couldn't believe it when I was announced as an #HSJ100 wild card. Who is it that the new Chief Executive of the NHS should be listening to? Apparently it is me! And then I thought about it. I have a fantastic network and could be a ca...

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Aiming to match podcast guests loosely to Whose Shoes colour coding to try to get a good balance of perspectives

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Aiming to match podcast guests loosely to Whose Shoes colour coding to try to get a good balance of perspectives

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Pssst. Just Do It! #JFDI: by Gill Phillips on @stellerstories

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Share Your World: Share and discover great experiences from cool places!

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Episode 2 - Dr Farzana Hussain - Wild Card - Whose Shoes?

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Gill Phillips:

So, I'm absolutely delighted to welcome my friend Dr. Farzana Hussain, my very first podcast guest. Now, Farzana is GP of the year. She's an amazing role model. She was absolutely, or IS, innovative and inspirational during the pandemic. She's incredibly person-centred. And I believe Farzana, that you were an HSJ, wildcard yourself last year. I love the way you've been prepared to just jump into the unknown here with me and start an adventure. So tell us a bit more about yourself, and what's important to you.

Farzana Hussain:

Well, thanks so much for having me Gill, a fellow wildcard and I'm delighted to be your first guest. So I just say Gill, I've been a GP, it's my 20th year this year as a GP, and I work in Newham in East London, and I trained there as a junior doctor as well. So it's my 24th year as a doctor. And I'm also a clinical director for one of our Primary Care Networks. Primary Care Network are a grouping up a number of general practices. And the idea of that that came out in the 2019 long-term plan is that the these Primary Care Networks are very much based in the community at place level, looking after between 30 to 70,000; mine is 67,000. And that we really work with our communities and with our hospitals with our mental health trust to really integrate that work together. And I found the concept of that really exciting because for like 15-16 years, I'd been a GP. And I just felt Gil, that things that I was doing in my consulting room, it was very much in isolation, I felt I was part of a jigsaw puzzle, but I couldn't see the other parts. So a very simple example, you know, some of my children with asthma ... it's all very well, giving them the inhalers, but actually, if they're living in damp conditions in their house, and actually, you know, mum is struggling and you know, smoking is the only thing that gets her through the day, because she's got so many other things. So that's why the determinants of health and addressing them is really quite important to me, because I don't think as a GP, I can offer good health, otherwise. So that's quite important to me, really Gill. And of course, it's great to be on your podcast, because you actually taught me a lot when I first met you through through the lovely Becky Malby, who I know is very passionate about communities and networks and all the great stuff she does at Southbank University, as a professor. And Gill, before I met you, my experience of dementia had been very much Well, the first thing was, Oh, this is going to be a very long letter that I'm going to read from the hospital. And this is going to take me a long time. And then it was, Oh, this probably is a home visit. And the third thing was, oh my gosh, will the family tell me off because I'm not looking after this person properly. And those were all the anxieties that were going through my head as a GP. And I think one of the things that you helped me with was, with your great board game idea, you made me realise - that sounds so obvious, doesn't it? - but that actually people suffer from dementia or people and that actually there's a lot of other assets out there that we as GPs can draw on. And, you know, just thinking about these people as frail old people who are extra work for us might not be the first thing to think about.

Gill Phillips:

Well, so that could even be one of ... we mentioned before we started talking about leading up to some lemon lightbulbs. So that could perhaps be the the first one?

Farzana Hussain:

Could be a lemon light lightbulb! A lemon light lightbulb that when we think about ... now I'm using dementia as an example ... but when we think about somebody with an illness, and particularly if we're seeing a lot of complex conditions as we've got an ageing population, that we maybe frame it differently. Oh, and I think something you know - I am working in the NHS, I love the NHS, but I think something I would say the NHS perhaps doesn't maybe do as well as it could is that we very much start from a place of "How can we empty the hospital beds? How can we save more money?" And I wonder if we'll be better off starting thinking about how can we help so and so's mum, who happens to have dementia, live the best life she can. So it was because of you that I got interested in other things that people with dementia can have. And then of course our mayor of London Sadiq Khan talked about the London museum being the first museum that's dementia friendly, and I would never have gone to visit that if it wasn't for you. And I had a great day out myself and I saw what they did and it helped me think about my my patients in a more ... they are people! These are not you know, they are not just lying there dying right at this moment, which is sadly, you know, one of the things I used to think of when I thought about dementia. So, yeah, lemon lightbulb moment would be for me - even when we see a lot o illnesses, let's think about th person behind the illness. An if I were running the NHS, whic I'm not, I woulds maybe start b thinking about that, rather tha how do we keep people a hospital

Gill Phillips:

That's brilliant. And I mean, it's been so reciprocal, I think our whole relationship and as you were talking there, and about being interested in the social determinants of health and why people smoke, and so on. And o one of the things I mention d at the beginning that I'v been so impressed by how yo 've been during the pandemic and the combination of you self and there's a doctor o Twitter called Dr. Bob Klaber, who I find fascinating, and he's got a concept 'be curious'. And I think in one or two se sions I've mentioned you, Farz na as a curious person. And I've absolutely loved the way that instead of just saying "C VID vaccination is good for yo , you must have it", you've fou d out WHY, you've got into t e shoes of your patients in te ms of, you know, talking throug with them what it is they re worried about, and as a trus ed person, chatting that through with them, and then naturally . . Tell us a bit more a

Farzana Hussain:

Yeah, Gill. So you know, I consider myself a really nosy person, and I think that's a positive thing if you're a GP. I think curiosity is so important. And you know, we kind of are born with that, or we I think it gets knocked out of people. Because if you see little children, they're always curious, something going into cupboards looking at people - they're curious! I think we're born with that ability. And I was noticing with the COVID vaccine Gill that, again, where I am in Newham sadly, we had the highest COVID death rates during the first wave. And I was noticing very early on in December, only about two, three weeks into the campaign where at that moment, we were still only vaccinating the over 65s and the extremely vulnerable. And in my own practice list, on a list of 5000 people, I noticed that the over 65s, that had been (only 50% of mine had been) and all the over 65s that had been (vaccinated) were Caucasian, and all the over 65 that hadn't been were all either BAME or Eastern Europeans. And it was so, it was so striking! And I just thought, I wonder what's going on here. And I'm very fortunate Gill, I'm very blessed to be, I've been in my practice for 18 years. And I know a lot of them. And my over-65 numbers are quite small, like I've got only 200 over 65. So we're talking about 100 people. And I started ringing them. I just thought just again out of curiosity, "let's ring" and it was so you know, various different reasons. I had a, you know, an African lady who's in her 80s, who was concerned about the long-term effects, you know, she's very concerned. And I know her really well, Gill. And I said, "Well, if you grow a second head in 20 years time when you're 103, I'm not upset and I'll come and cut it off for you myself. Because I know her, we were able to giggle and her son was also very instrumental. He wanted his mom to have it. So I was having a joke with her. And then I lost my own Mum, as you know, Gill, when I was 19. And I said to her, "My mum would have been just a year older than you now. She's not here. But if she was here, I would want her to have it. And even though you're not my mom, I would want you to have it". Three days later, she had it. She rang me back to say she'd had it.

Gill Phillips:

That's amazing.

Farzana Hussain:

And I think that's the ... I forget how blessed and privileged I am. But also what a great privilege and position it is that actually, we have so much trust as GPs. And I think it's part of our duty to do. I didn't get a success rate with everybody at the time Gill, only about one in five went but as the months went, I'm happy to say that my over-65 vaccination rate at the practice is over 75% double vaccinated. And the rest of North- East London hasn't got that. I mean, most are still under 50% double vaccinated. So it does show me the power of those individual conversations. Now I know that takes time and I'm not suggesting that all GPs would have that time but it certainly worked for us and I think it was a great piece of work. So I'd definitely do it again. You know, now that we know how many lives are being saved by the vaccines.

Gill Phillips:

And I think what I'm hearing there is that you really know the patients ... the combination of ... you call it nosiness, be curious, whatever it might be, but people appreciate that and then the personalised care. So you couldn't write a manual saying, you know, if somebody of a certain age, you tell them that in 20 years time... You know, that's such a personalised story. And it reminds me of ... I mean, obviously I hear a lot of these stories through my work. So one of the mums that we worked with, she's been a brilliant #MatExp champion and leader, and her campaign became around hospital breastfeeding, because she knew that she was very good at breastfeeding, because her youngest son had had serious heart problems. And she got involved in, in care where it became difficult to do what she needed to do as a mum in terms of breastfeeding. And her older son, people in the hospital had nicknamed her Daisy as such a wonderful milk provider. Now, that seems to me a similar sort of story. And you know, what I love about the kind of properly person-centred approaches is it's about having that relationship and knowing that person well enough to do something that's a little bit quirky or a little bit cheeky,

Farzana Hussain:

That's it exactly Gill, again a lemon lightbulb moment, there's nothing that is a substitute for a good trusted relationship. Yeah, absolutely, you can get away with cheek, you can get away with so much. And of course, there's a lot of evidence that GPs that have continuity know their patients really well actually also reduce referrals and prescribing because, you know, they know them. I think one of my, one of my sadnesses is that, as I see, I understand about, you know, corporate care, but I do worry that we're losing that smallness and that family medicine that we had in primary care. I hope that there's still a place for it. I think primary care networks offer a solution to a different issue. I think ICSs - big, integrated care systems - offer different but I think you need an appropriate size for each place. And I am sad to see that small practices are becoming a thing of yesterday, because I don't think there is a there is a substitute for that trusted relationship.

Gill Phillips:

That's really interesting. Because when people you know, certainly of my age used to talk in terms of "my GP", you meant "my GP". It was the person that you saw, whereas now it can, you know, at worst be a name on a bit of paper. You know, from that big practice, you've been allocated to someone. So yeah, lots to think about isn't there?

Farzana Hussain:

Lots to think about. But I do think Gill that with the pandemic. I think that we've accelerated in many ways. I think that, you know, they say, don't they burning platform, there was an absolute need for the whole world to function differently. And unless I'd lived through it Gill ... Wow, what a roller coaster the last 18 months has been. But if you had asked me when I first met you, "You know Farzana, would you be able to, like go fully online triage at your practice? Would you be able to do a drive-thru clinic for your childhood immunizations? Would you be able to make all these changes, I would say, of course not Gill! And I think ... would primary care be able to do 75% of the delivery of a vaccinating an entire country? Well, I would just say, "You're off your rocker, Gill!" Do you know, we're good? We're not that good. But it happened. And it absolutely shows, you know, well, first of all, how lucky I am to live in England, and how great it is to be in the NHS, because actually, people pulled together. And it was again about those relationships Gill. I had a consultant call me, which doesn't happen that much. You know, we talk about integrated care, but we have sadly, it's really awful but in primary care we don't talk to the hospital that much. I had a consultant call me about a Covid patient. And he said, "Oh, is it alright, if I just talk to you?" and I was like, "Yes..." And I was waiting. I was waiting for what he was going to say. And he said, "They don't need admitting. I just wondered, could you write them up some antibiotics for me and just review them in two days?" I was like, "Yeah". And he said, "Can you?" And I said "Yeah, that's quite easy for me". It just, it really made me think about how we really need to pick up the phone more with each other because he thought he was asking me for a pot of gold. And this was actually an easy piece of work for me. So I hope that continues, again with the COVID vaccine, working with our councils, particularly working with our communities, and you know, faith groups, communities, that's been phenomenal. And I hope we don't lose that. I hope we can now do that for other things. You know, whether it's breastfeeding or obesity, or whatever we want to talk about.

Gill Phillips:

And hanging on to that, that good stuff. I mean, I think that was another point at which our paths crossed because you remember last year I was trying to develop virtual Whose Shoes and basically the plan was, and I think one thing I really enjoy ... and there's good practice out there. There's great practice out there, people do things well and quickly. So you get perhaps the negativity about certain things. So my take on it is often "Well if you can share the good stuff, so and so is says managing to do that, so and so is doing that and whether that comes from the NHS, or social care or from the community ... I mean, obviously, the community and the way they responded, saved us in some ways. But at that early stage, I remember picking up ... I mean, I think you're quite diffident in that ... it wasn't just 'the NHS doing those various things', you were a leader in terms of, you know, certainly I saw the outdoor vaccinations and the children's immunizations and so on, and I suppose what I loved about it was, I really love simple things, and things that we've never have thought of in a million years, actually, if you're trying to keep people apart, or not spend too long in contact with each other but this intervention is really, really important, to give the child their jab ... It's not rocket science!

Farzana Hussain:

It's not rocket science, and I think you've hit the nail on the head Gill. And actually, sometimes those simple solutions are the ones that are the most effective. And often they come from the community, because, again - I'm not tryin to put down the NHS. I love the NHS - but someth ng that we, particularly as do tors, we're very keen on evid nce Gill like everything is evid nce, and I understand th t, I mean you wouldn't ant to put an injection of a dr g in somebody without good ev dence that it won't kill them I understand that. But I also hink that sometimes, if we wa t to look for evidence, we can also hold ourselves back becaus somebody needs to do it to create evidence. So if we ll waited for evidence, there as 100 of us in the room, nd we all thought, let's see th evidence and everybody waited, hen nobody's going to achie e anything, because nobody's d ne anything to create any vidence. So sometimes I think and that's what I love abou being a GP, because we can e a bit more rough and ready an we can work with our patients. didn't know if I was doing th right thing with the childhood mmunizations clinic, Gill a d we quickly realised that not e erybody in Newham has a car so it's great to have a drive-th u but, we quickly changed t to 'bring a buggy through' as well. Your buggy can be c assed as a vehicle! So our li tle kiddies were coming in in t eir buggies and I was vaccin ting - well, my nurse and I were both out there in our fron garden. And it was a bit indy. And I said to dad - da had brought this one in ... an only a four month old. And I s id "I'm really sorry, I hope he's not too cold. You know, w 're just like trying things out" And the dad, who is the perso I'll always remember, it wa only our second week doing it. nd he said, "Doctor, we're a l learning and I know you'r doing your best". And that, to me meant a lot because I asn't quite sure. And I still fe l emotional about that. Because I needed to hear that from im. He said, "We're all learn ng doctorand I know you're do ng your best". You know, that w s March 2020. And our vac ination rates went up becau e our vaccination rates h ve gone down Gill and we know hat measles had made a comebac in London a few years ago anyw y. And that was my fear that we' e in the middle of a pandemic with Covid. And now we're goi g to get other infectious d seases resurging, where we do have vaccines. So it was r ally important

Gill Phillips:

And I think, you know, that's another lemon lightbulb. That feedback from the community that it's not all one-way is it? That, you know, you need that reinforcement, you need that support. You know, that's really nice to hear. And I'm glad that ... I'm sure he'd be delighted that that's ... like stuck with you.

Farzana Hussain:

It is so important. And I think that now when we are all feeling a bit jaded and tired after 18 months, and we know that, you know, a lot of people have waited for their GP appointments during lockdown. And we're seeing this real, like there's been a 25% increase. This is the time when now we need to work together with our communities, because sometimes under times of stress, it becomes a bit tribal. And you can see "Oh, those patients are asking for too many appointments!". And "those GPs are not seeing us face to face!" And actually the answer is if we talk to each other and you know, both of us need reassurance. I hope that we do that more as we get to integrated care systems. And we don't continue, perhaps sometimes that patriarchal matriarchal nature that the NHS and doctors have had, you know, you've come to see the doctor. And I know, and I will tell you what to do. Because I don't think that works.

Gill Phillips:

No, the whole shared decision making, I think, you know, in terms of the work that we do, seeing the power of people who perhaps come along to a workshop as complainants, and expecting perhaps, I don't know, to have a battle or not be heard or whatever. I think one of the key things I've seen throughout all of our work is as soon as people realise that the healthcare professionals are actually very keen to listen properly, and to value the people and value their perspectives. Then it's almost like a balloon coming down, that instead of everyone being kind of like defensive and then they realise well that the healthcare professionals have got problems as well and we're all human together. And then you can always sort of feel the collective relief that we then just start talking to each other as human beings. And it's amazing, then anything's possible at that point, and very often the outcomes aren't things that you'd have predicted at the beginning. And sometimes it worries me if people want, you know, an apparent in inverted commas 'co production workshop', but to achieve a certain outcome, well, actually, the coproduction needs to determine what the outcome is. A bit like our podcast here!

Farzana Hussain:

Yeah, we're just learning as we go! And I think there's a lot of, you know, fun in that. And I do think that requires people to let themselves be a bit vulnerable. And again, you've said a light bulb thing there, again, that we're talking about trusting relationships. And we're talking about the same thing, again, aren't we that we need to trust the people that we're looking after that they also ... I might have a bit more scientific knowledge, because I've been to medical school, just like if I take my car in to be serviced, I'm expecting the car mechanic will know more about the car than me. But But otherwise, I'm here to provide a bit of the knowledge, and then think about what my patients want to do. And I think that, I think we lose that a bit sometimes. And I think this is a really good time to do it do Gill because now that obviously, primary care networks are here, we're two years old, we've got a lot of supporters, GPs with our additional staff. So we've got pharmacists, we've got physicians associates, and we've got social prescribers. And social prescribers are people who are not medical, and I think that's an asset. And they, we think about the whole person, and what they might or might not need. And I think that's a brilliant role. And I think that has enhanced care for our people and our patients. And I'm hoping that that's going to span out actually. We're, in our network, looking at getting a specific young person's social prescriber now.

Gill Phillips:

Wow, that sounds interesting.

Farzana Hussain:

So, so because we're quite a young borough, and we've got issues like, you know, knife crime and other things. And, you know, everybody's got a lot of mental health isssues that are affecting young people. So I think that that's quite an exciting thing. And I, I do think that, I might say this because I'm a GP, but obviously, I'm in the community. I live in Newham, I work in Newham, Newham is very important to me. And I think sometimes again, we spend a lot of time in the NHS talking about getting people out of hospital and how much it costs for the 89 year old with five different illnesses to be in hospital. But what are we doing for our young people in that prevention thing, because their lives are no less important. And just because they don't spend a lot of time in hospital in bed, doesn't mean that they're not important. So, if it was up to me, I would try and turn that on its head and really look at that prevention agenda. And also think about what we can do in the community and how the community can help us.

Gill Phillips:

And probably, particularly after the pandemic,

Farzana Hussain:

Absolutely, Gill. And just as a parent of a I would guess, in that we've all thought about protecting older people - and children and you g people have, you know, be n safer from COVID but missi g their education, missing th 17 year old and an 18 year old, I forget what a big portion of ir friends. You know, I'd like to see a lot of focus going on young people in terms of making up for all that they've lost eally. their life 18 months has been because me at 48, 2 years doesn't seem that long when you're my age, but I forget that, you know, my 17 year old didn't take GCSEs, she didn't say goodbye to her friends, and went to a different sixth form. And I hadn't fully understood like how angry she was about that. And how she, you know, she desperately wants to see her friends and go out a lot more now. And you know, she hasn't

Gill Phillips:

And I think in terms of, you know, you use that got a diagnosable mental health issue, but many of my young people have. And I wonder about many of my patients who aren't coming forward, because of course, they could deteriorate. They're only young people, their whole lives are ahead of them. phrase 'diagnosable mental health condition'. And I suppose, part of the work that I'd hoped to do, and perhaps particularly a role for this podcast series might be to think about how the NHS needs to concentrate on wellness and wellbeing as opposed to just illness and you know, the opportunity to reach out to the community. I suppose I've got this dream of just like linking everything up and the community is a very big part of that. And the people who are well at the moment, but if you don't giv them any, you know, not neces arily NHS support, but general s pport, then they'll become il and they'll come into the syste .

Farzana Hussain:

Well, I couldn't agree more and we were talking before we came on, weren't we, about what would you say to the new CEO of the NHS? Because now we know it's Amanda Pritchard and I had the privilege of meeting her before the pandemic. I was fortunate to be invited to a roundtable event on ICS and she was just so lovely. She was just so like ... I went and said hello. And she was just so down to earth, just so just normal and lovely. So I think we're very fortunate to have her and obviously the first woman to run the NHS, it's fantastic. But if we're really going to think about the wellness agenda now, we have to do exactly as you say. We need to think about, what can we put in, and it doesn't necessarily need to be NHS. But those little interventions, I think, will have huge gains. And people around the country are doing it, you were talking earlier about pockets of good practice. I know in the north-west, you know, they've had mental health cafes for a number of years. And sometimes, if somebody just has one, that's not a huge resource, but you might be actually saving somebody going into a psychiatric hospital years down the line, you know, you might not be, but you might be. And I think we just need to prioritise that as well, because I think these are quite quick wins that aren't even particularly expensive. And I think sometimes I understand when you're on a tight budget, as obviously the NHS is, you probably think about your biggest spends, but I wonder if we should also be looking overall, and looking at the long term thing that if we keep these guys well, not only to increase their quality of life, probably save a lot of money as well.

Gill Phillips:

Yeah. Lots to think about. I was reading a blog, I don't know if it's only come out today, but I read it today, Sam Allen has written a blog about the new Chief Executive and delighted that she's a woman, etc, etc. But that that's only part of the story. And I was thinking , I've set up this podcast series, specifically as a result of being named as a 'Wild Card'. And the brief was basically, people who'd have something to say to the new Chief Exec, I'm thinking, poor woman, she's gonna have her ears battered from every direction, and whether she'll ever get the chance to listen to my podcast, but I think she'll gain something if she does. I think the three things mentioned in this article that she would need was support and time and resources. So we can all have all these fantastic ideas, but she's only a human being as well and actually to run a service that's properly resourced, and with, you know, the right priorities is key.

Farzana Hussain:

Definitely support, time and resources. And that time is always something we feel very short of. And I think it's up to each one of us in the NHS to support her with that as well, you know, with the communication and the feedback. And then I guess, someone like me, who is a GP, seeing patients on the front line is then to also get that feedback from our community. So it's a chain, isn't it? And because we do all need to do this together, it isn't like one person's issue. It's a whole society issue. And I think never more important now than the period we're in, living in a pandemic.

Gill Phillips:

So, that's another key message. Do things together!

Farzana Hussain:

Do things together! Yeah, I'm really enjoying these lemon lightbulb moments. Trusted relationships, do things together. And certainly that feedback we get from our patients is priceless. It does keep us going.

Gill Phillips:

That's amazing. Farzana, was there anything? I'm just thinking we mentioned time just then ... we'd set ourselves a notional 30 minutes. Is there anything you think that we've ... I mean, obviously, we could talk all day!

Farzana Hussain:

No, I think I've chatted away there. Thank you so much for having me. I really enjoyed that.

Gill Phillips:

OK, that's the end of our first guest podcast. I'm over the moon with speaking to you Farzana for the first session, and let's hope the podcast series makes a big difference to improving healthcare and lots of interesting chats and connections.

Farzana Hussain:

And thanks for having me, Gill. Take care.

Gill Phillips:

Thank you Farzana!

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Episode 2 - Dr Farzana Hussain - Wild Card - Whose Shoes?

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My very first podcast guest!Very special indeed that my good friend Dr Farzana Hussain, GP of the year 2020 and fellow #HSJ100 Wild Card, dived in to do this with me. This is exactly the tone I am wanting for the podcast series - full of humanity...

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#NoHierarchyJustPeople - fab people with more 'positional power'

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#NoHierarchyJustPeople - fab people with more 'positional power'

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Inspirational people, fascinating and diverse viewpoints, new connections, fun and engagement - all designed to help us improve health and wellness.
Find out more - Gill explains what you can you expect from this podcast series.

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Wild Card - Whose Shoes?

Episode 1 Setting the scene

Gill Phillips @WhoseShoes

Welcome to Wild Card - Whose Shoes! Walking in the shoes of more interesting people 😉

My name is Gill Phillips and I'm the creator of ' Whose Shoes?' a popular approach to coproduction and I am known for having an amazing network.

Building on my inclusion in the Health Services Journal 'WILD CARDS', part of #HSJ100, and particularly the shoutout for 'improving care for some of the most vulnerable in society through co-production', I was invited to provide thoughts and ideas for the new NHS CEO, Amanda Pritchard, so here I am .... with a little bit of help from my friends. I will be chatting to a really diverse group of people, providing a platform for them to speak about their experiences and views.If you are interested in the future of healthcare and like to hear what other people think, or perhaps even contribute at some point, 'Whose Shoes Wild Card' is for you!

Today, I set the scene, talking about some of my own insights and experiences, some examples of topics we will be covering and people I'll be talking to - including an extract of my chat with Dr Farzana Hussain, GP of the Year 2020, and my special guest for Episode 2!

Find me on Twitter: @WhoseShoes and @WildCardWS.
Dive into https://padlet.com/WhoseShoes/overview and nutshellcomms.co.uk to find out more about the #WhoseShoes approach to coproduction.

Artwork aided and abetted by Anna Geyer, New Possibilities www.newpossibilities.co.uk

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Episode 1 Setting the scene - Wild Card - Whose Shoes?

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Welcome to Wild Card - Whose Shoes! Walking in the shoes of more interesting people 😉 My name is Gill Phillips and I'm the creator of 'Whose Shoes?' a popular approach to coproduction and I am known for having an amazing network.Building on my in...

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#NoHierarchyJustPeople - 'Patient leaders', 'people with lived experience' - are we LISTENING?

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#NoHierarchyJustPeople - 'Patient leaders', 'people with lived experience' - are we LISTENING?

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Listen to me chat to Whose Shoes aka Gill Phillips - how we bounce ideas off one another and how she inspires my creative side

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Sometimes you meet someone who spurs you on and brings out the best in you, for me this is Gill Phillips aka WhoseShoes. Hear us chat about what makes us #MagicMates & how finding someone you click with can make magic happen!

More information about Gill & some of the topics we discuss:
https://padlet.com/WhoseShoes/overview
One blog Flo! https://whoseshoes.wordpress.com/2015/02/23/in-the-shoes-of-florence-wilcock-divisional-director-specialist-services-obstetrician-kingston-hospital-ft/
http://matexp.org.uk/

You can find out more about me on Twitter @FWmaternity & @TheObsPod as well as Instagram @TheObsPod please check out #MatExp matexp.org.uk for ideas about how to improve maternity experience.

My beautiful artwork is thank to Anna Geyer www.newpossibilities.co.uk

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Sometimes you meet someone who spurs you on and brings out the best in you, for me this is Gill Phillips aka WhoseShoes. Hear us chat about what makes us #MagicMates & how finding someone you click with can make magic happen!More information a...

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Video of Episode 61 - What matters to you?

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Video of Episode 61 - What matters to you?

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Talk at RCOG Labour Wards Leads event, June 2021

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2016-05-28 Pinks N Blues workshop - Listen I'm the problem

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I love this image by Anna Geyer, New Possibilities, recorded at one of our #MatExp #WhoseShoes workshops

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Keep calm and carry on: Gill reflects on the Queen's death, her Mum's death and more

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70 years of continuity.

How often does that happen in the modern age?

Or ever really?

You don't need me to tell you it has been the most extraordinary week, so I wanted to take a bit of time to mark this in the sand, before it too slips away. I feel as if I need a bit of a constant in my life, and I expect other people feel the same.

I am very sad about the death of the Queen. Well, like everyone I have a mix of emotions. I think the idea of dying apparently pretty suddenly, at the age of 96,in your favourite place in the world, (the Queen's beloved Balmoral), is actually pretty awesome. The loss is ours and not hers. And I am mourning not only the Queen, but I think even more so that whole era of steadfastness, selflessness and putting others first.

These feel like old-fashioned values these days.

And to be honest, It feels like losing the last tangible piece of my mum. The Queen reminded me of my mum, or perhaps it should be the other way round? These two awesome women were very similar in many ways.

People talk about the Queen being 'privileged', and of course she was in terms of money and material things. But was she in terms of the dice that she was actually thrown in life?

I wouldn't choose that lifestyle, and the total lack of normality. Not for all the tea in China (I guess that's another old-fashioned expression... for me, perhaps the Apple announcement of the latest iPhone would be the equivalent ... also this week, but I digress.) I'm glad the Queen had somewhere to slob out, wear an unglamorous rain hat, and to be a human being.

Change. I think about change a lot on this podcast. There is so much change in society, in everything.

But I have also been fascinated.

Learning how the modern era does something like the accession of a new king. SO much pomp and tradition, but fast forward from 1952 to the social media era and the social mores of 2022. The blending of the old and the new. The 'how we have already done always things around here' with ... woah! The Queen's love of horses, The beautiful steady horses pulling the Queens great-grandchildren in the fabulous Jubilee celebrations not so long agao (thank goodness we were not robbed of that lovely memory!) and the wild horses of today's social media - uncontrollable.

Nobody got to see the accession of Queen Elizabeth the 2nd, as it wasn't televised, it was all behind closed doors, and indeed people hardly had televisions in those days.

People scrambled to see Queen Elizabeth's coronation the following year, either buying a little television for the first time, or going round to a neighbour who was lucky enough to have one, watching the ceremony together on a tiny black-and-white screen.

After a week in which we have already had a new prime minister, and a cabinet thrown together quicker than one from IKEA, I was thinking the death of the Queen would leave a huge void.

I have been deeply impressed and somewhat comforted by the feeling of continuity in the royal family. 'The king is dead; Long live the Queen' was something I heard about in my childhood.

And now we are witnessing it first hand, but the other way round.

Okay, they have had 70 years to practice it and all the scripts were written, but to pull together the pomp and ceremony and seamless brilliance of the accession ceremony I watched on TV, makes me a little bit proud to be British and to feel at least a glimmer of hope.

I haven't felt much pride in being British for a long time, and we all need hope and are trying to hang onto a bit of stability In these deeply troubled times.

So for myself, as much as anybody else, I wanted to capture this unique moment in time, and a few random thoughts, while it is all so vivid and surreal.

I guess with my Whose Shoes brain, I am always fascinated by observing people and life. Seeing how it all pans out, from different perspectives.

With my classical education - I studied Latin and French at University- I am fascinated by the human side of history, so loads of thoughts and memories have been going through my mind. Stuff I haven't thought about for years!

In my very first job as a public servant, working in social services, I was heavily involved with emergency planning, and specifically the emergency accommodation plan. We had a list of suitable premises, ranging from sports centres to day centres, that could be used in the event of different types of emergency. I found it really interesting thinking through the different scenarios of what we would need to do.

We designed forms to record people's names and details. We had lists of phone numbers, roles, duties and responsibilities, location of megaphones and such like, and we had no end of contingency plans. We kept it all in an emergency box. There was nothing digital in those days. And that was the late 70s.

Princess Elizabeth became queen back in 1952, before I was born. Before 94% of the global population was born. That puts it in context.

Thoughts like this have been swimming around in my brain, as I try to get my head round just how long it has been since there was a new monarch, and all the plans and processes that must have been put in place to maintain the continuity and legal requirements of the constitution.

What plans did they have? How often were they revised? How have they been honed and updated over time? Whose job was it? It has been fascinating to discover the answer to some of these questions over the last few days.

Did you see the ceremony?

The new King Charles has to say 'approved' on multiple occasions as Penny Mordaunt, who has been in post for about four days and did an awesome job, reads incredibly important oaths and proclamations. Instruments are signed, as the Duke of Cambridge adjusts the position of the inkwell and they all negotiate complicated logistics with pens. Instruments are played as the trumpeters mark the occasion. There is a formal announcement of guns in Hyde Park and beyond. Extraordinary.

And against this background of pomp and ceremony, we are in the age of social media.

"When exactly did the Queen die?", people want to know.

Clearly time was needed to put the long planned 'London Bridge' operation into action, before announcing the Queen's death to the world.

70 years ago, they would have been in total control.

This time they were in a race with social media and dealing with a very different age.

I don't think they have released an exact time of death. It was a slow death on Thursday afternoon, with an announcement being made that doctors were concerned for the Queen's health and that she was under medical supervision, a bit of paper being passed along the front benches of the House of Commons,

The family all flying to Balmoral, and BBC newsreaders changing into dark suits and black ties.

And all of our lives are suddenly frozen again, and we will remember for the rest of our lives the exact moment, where we were and who we were with, when we had this momentous news.

I was not really on the ball at all. Like everyone else, I was getting on with my own life. I was planning for a Whose Shoes maternity workshop in Oxford, which had taken almost 2 years to arrange. I was travelling there on Thursday, the day before the event, and I was too preoccupied with packing #MatExp stickers and lemon lightbulbs to be following the news at all closely.

I met up with my big friend #FabObs Flo, Florence Wilcock, in Oxford. Flo had agreed to co-lead the workshop with me - after all, Oxford was where she trained as a medical student and where she was inspired to choose obstetrics and gynaecology as a specialism. I think this was a strong case of wanting to give something back.

It feels incredibly special now, that Flo was proud to show me round her old college. We had a lovely walk and a chat, starting to catch up about things that matter to us. We were in a world of our own. But as we came back to the main entrance, we saw people in small hurdles talking quietly, the flag was at half mast, the bell was tolling ominously. We slowly twigged what had happened.

Is it hard to have such a switch of emotions and carefreeness. I think we both felt completely rudderless - what do we do now? I think the moment will stay with me always.

There was a sense of disbelief as only two days before the Queen had appointed the new prime minister with that lovely photo of her (I mean the Queen, not Liz Truss) smiling at Balmoral, wearing a cosy looking cardigan rather than the formal clothing of royalty that must be so tedious and uncomfortable to wear.

And then the practical issue of, what would happen next? Would the workshop still go ahead? It all felt very unprecedented in terms of etiquette, showing respect, but also awareness of how the Queen embodied the 'keep calm and carry on' ethos. How did these various conflicting drivers and expectations fit together? What should we DO?

And clearly, the real decision was out of our hands, it was probably at NHS England or government level, in terms of some directive about what happens next. But we were worried about doing the right thing and how we and everybody else would feel about it.

In the end, the workshop went ahead. A formula was worked out that felt as if it walked this delicate tightrope in a respectful, pragmatic way. Obviously hundred people might have 100 different opinions on this, but we got together as planned, acknowledging that people might not feel able or keen to attend., and working out ways to keep them in the loop and involved as fully as possible going forward.

We did not tweet on the day and will hold back a proper update about the workshop, with photos and all the usual energy and pledges, until after the period of national mourning. But suffice to say that it felt like an extraordinary event. It felt as if we tapped into the shared humanity in the room. It felt as though, as human beings, we needed to talk, and to talk about things that matter. There were some extraordinary conversations and I really hope that this workshop helps the maternity service in Oxford make progress and really makes a difference.

But this podcast is more about my personal thoughts and reflections, and as I say just having a bit of personal indulgence in terms of noting some of the details and nuances and celebrate the end of the life and reign of Queen Elizabeth II.

It has caused me to think back over my life, momentous things that have happened, how old I was and what I remember from then, particularly when I was a child. Some events are obvious, and some possibly less so.

At the age of eight, Winston Churchill's death and particularly his funeral I think, made a big impression on me. I had grown up hearing about the war and the sacrifices made, not least in my own family. Winston Churchill was a hero - the leader who had seen us through to the peace that I was fortunate enough to enjoy. A state funeral. And with the death of Queen Elizabeth, we will witness this again for the first time since.

In mum's final years, I had the privilege of recording some of our conversations. Mainly just chatting about this on that. One day, mum asked me whether i thought it was right that children think Churchill is a dog.

[Clip of Gill and her Mum talking]

Older people have a certain knack of seeing things from a different perspective, and we lose so much when they die.

In India when an older person die they describe it as a library burning down and I love this description.

Let's look after our old people, and respect all the things they have seen and done during their long lives and, as mum and I are talking about, make the most of intergenerational opportunities whenever we can.

So going back to my memories of big moments as a child...

When I was 10, 'we' won the World Cup final. I used to go with my dad to watch West Ham, but we weren't always West Ham supporters. I was a Manchester United supporter! Anyway, three of the West Ham team,

were playing in the final: Geoff Hurst, who scored a hat-trick, Martin Peters and of course the captain Bobby Moore! And Bobby Charlton and Nobby Stiles from Manchester United. I remember the excitement of winning in extra time but for me, collecting free World Cup Willie coins with petrol was a highlight . I wonder what happened to those coins! Perhaps I will find them one day in a sort out!

I was seven when John F Kennedy was assasinated and I remember seeing the images over and over, and the hushed voices in our house. But it was when his brother Bobby Kennedy was killed a few years later that I was absolutely heartbroken. I remember ruining a family day out at the seaside, which was a really special day out for me. I had a big crush on Bobby Kennedy, and cried my eyes out most of the time we were there.

My parents couldn't understand just how upset I was. I wrote his name in the sand with lots of hearts. I was 12.

I have loved seeing the pictures of the rainbows over Buckingham Palace, Windsor and Balmoral. Rainbows are extraordinary things - they have appeared at the most poignant times in our family life since my mum died.

It really feels, even if only momentarily, that they are there watching over us, only a thought away, as the vicar so memorably and helpfully said at mums funeral.

My more scientific head can't really get a handle on even my Mum or the Queen, having the power to rustle up rainbows to help us out and give us hope at tricky times in life. So much we don't understand!

So, as I say the Queen's death has made me think a lot about my mum. I think about her all the time, but it is good to take a bit of time out to reflect on the generations that have gone before us. I love it when we all get the chance to learn from each other - there are so many good things to take from the fresh eyes and fresh experiences that each generation brings, the balance between different drivers in life, individual and society, and how we can work together for fairer opportunities and respect for everyone.

Flo said how much she had enjoyed the episode I recorded for what would have been my mum's 100th birthday - again going a bit off piste from the usual focus of my podcast, so it is always lovely to hear that people are listening and enjoying it!

I suspect the Queen had a really good sense of humour. And just as my mum lived to 95 and I was able to get the opportunity to record more of her voice on audio and indeed on video, I love how the Queen loosened up a bit in her final years say that the people got a glimpse of the real person behind the throne, and I'm sure nore things will be shared now, and we'll get to know her better.. The lovely sketches with Paddington Bear and with James Bond brought us a whole new perspective.

So what did Mum think about the Queen? She loved her and was proud that they shared the name - Elizabeth is my mum's middle name. Mum understood the Queen and her life of duty and sacrifice, in a way that I think only her contemporaries could do.

The young princess who was not expecting to be queen, almost certainly didn't want to be queen, and then devoting literally her whole life to the responsibility and duties that she suddenly inherited.

I think with the death of the Queen, and Prince Philip last year, it feels like my own parents dying again and somehow with even more finality. Mum died five years ago now and my dad eight years before that, but while the Queen was still alive it felt as if a bit of Mum was still there. Mum always put everybody else first. I'm not sure I know anybody who does that these days, ... and indeed whether you should do. The sharp contrast with the 'me me me' brigade and throwing away anything and everything, including people sometimes because it doesn't serve you immediately feels a very tricky world to live in. But I'm sure by now I am sounding very old and very old-fashioned.

A week such as this inevitably brings thoughts of our own mortality.

Thoughts of what matters in life.

Thoughts about what makes a good end of life.

My mum's final few weeks, including her time in Myton Hospice.

As someone once said at our Whose Shoes workshop with London Ambulance Service around good end of life care, a good death leads to a good bereavement for those left behind, and I think that is very true. And being as every detail of the royal family's lives is played out so publicly, I'm glad the queen was able to slip away so privately. Nice one!

The Queen's incredible sense of service and duty has left a truly remarkable legacy.

At our workshop in Oxford, we perhaps took this a step further, asking people what they would like their legacy to be.

I talked about Helen Calvert - a mum in Liverpool and early #MatExp leader, who can look back and see the extraordinary mark she has made. For example, instead of just complaining about how difficult it was to establish and maintain breastfeeding on a neonatal ward, Helen was instrumental in setting up various national infant feeding networks to help new mothers. Oh, and she founded the #MatExp Facebook group, which now has over 3500 members, and is a brilliant way to keep the conversations going.

So, we challenged people a little. What will your legacy be?

What do we each want to be remembered by?

The immediate aftermath of the death of the Queen has left a really bizarre mix of cancelled and not cancelled events. One local village cancelled their fete, despite it being a lovely community event that people had worked hard on for months; another village went ahead and included a two-minute silence where everyone could reflect and show their respects before having fun and splatting rats and all the things that are part of the strong feeling of tradition and stability that the Queen represented.

There has been a lot of talk about 'what the Queen would have wanted'.

How to do the right thing? Luckily not my call. Just people doing their best.

I'd like to think that the Queen wouldn't have wanted good stuff to be cancelled because she died.

My Mum went into work in 1942, the day after her fiancé was shot down and killed over Belgium. She said, "But Gillian, that's what we DID in those days", it was happening to everyone ...

She absolutely adored Robin.

My parents were married for 60 years - my Dad was also in the RAF throughout the war, posted for much of the time in Burmah. It was only later in life that Mum spoke more about Robin and I started to understand what it was like when your fiance is shot out of the sky a month before your wedding. What an extraordinary generation!

And now we have the enduring image of the Queen sitting alone at the funeral of her soul-mate, Philip.

Duty personified.

And we remember all the people who have died, separated from loved ones during the pandemic.

And subsequently finding out about partying in Downing Street.

And all the shenanigans of the last couple of years.

It is a lot to process, isn't it?

So, for our workshop in Oxford, it was agreed to delay our full social media coverage until after the period of national mourning - and then talk about the workshop more fully and share some of the early outcomes, as we always do.

So, you will have to wait for that. But I'm hoping it will bring something special, a bit of a new start, who knows, as there was a really vibrant atmosphere with views and stories being shared very openly and honestly - women and families and staff coming together, #NoHierarchyJustPeople. So, Florence and I were glad to be able to facilitate this.

Look out for the little poignant royal corgi on the visual record produced by Anna Geyer, from New Possibilities, as a reminder of how special this event was, the extraordinary timing, and how we were all challenged to do something that helps others.

So, as the proclamations continue, announcing the death of our much-loved Queen, bringing back a taste of a bygone era with no social media. Or even television.

To tweet or not to tweet? That has been my dilemma and I have had a bit of a personal purdah, not tweeting for three whole days, which is pretty unheard of for me!

But I am now back with this podcast. I hope you enjoy it.

So what are this week's lemon lightbulbs?

Rest in peace, Your Majesty. You have done more than anyone could have expected of you.

I will raise a glass of Prosecco to you and my Mum - a joke I had with Mum around her 95th birthday party, which was code-named Prosecco-gate. And indeed I shared this with Flo and we raised a glass to both of you on Thursday night.

And, who knows, perhaps Mum and the Queen are raising a glass of Prosecco together now. #NoHierarchyJustPeople.

We need to keep calm and carry on - and think how we can each follow your extraordinary example.
Anyone for a marmalade sandwich?

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36. Keep calm and carry on - Wild Card - Whose Shoes?

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70 years of continuityHow often does that happen in the modern age?Or ever really? You don't need me to tell you it has been the most extraordinary week, so I wanted to take a bit of time to put a marker in the sand, before it too slips away. Goi...

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Delighted, as always, to contribute to Fab NHS Stuff. This time: "The Art of the Possible" week

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39. The Art of The Possible – Fab NHS Stuff

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39. The Art of The Possible – Fab NHS Stuff

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39. Art Of the Possible - Fab NHS Stuff - Wild Card - Whose Shoes?

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This week, I was delighted to be invited to kick off the ‘Art of the Possible’ festival, hosted by Fab NHS Stuff.It’s been a lively programme focused on making good stuff happen - five days packed full of short webinars and other goodies, offering…

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43. #WildObs Christmas Special with #FabObs Flo

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43. #WildObs Christmas Special with #FabObs Flo

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Catching up on some of the #MatExp highlights of 2022 - and having a bit of fun!

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43. #WildObs Part 2 - Christmas Special, 2022 - Wild Card - Whose Shoes?

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As we hit the festive season, join me and my ‘magic mate’, Florence Wilcock, as we  reflect on 2022 and have a little fun.Florence is a consultant obstetrician, a great friend and my co-founder of #MatExp. We chat about some of our key advent…

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“No decision about me without me”

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"No decision about me without me" has been a key element of NHS rhetoric since 2012. It's a great idea, however, the current reality is that as a universal principle this remains far from true.

Why is there still such a struggle to make this happen? In healthcare there is an increasing acceptance of the need to have patient engagement strategies and patient representatives at meetings, however, this attempt can be tokenistic and fall short as a genuine endeavour to find out what service users want, and to design improvements and implement changes together.

I know that in the work that I do with #MatExp, both online and at "Whose Shoes" maternity workshops, the value of health professionals of all specialties and grades talking and listening to the women and families they care for on an equal footing cannot be overestimated.

In some ways, maternity has been lucky as a specialty that has taken early steps to involve patients and collaborate with them-with maternity service liaison committees (MSLC) running since 1984. However, I will openly acknowledge that in the past for some professionals, attending the MSLC has not always been a positive experience. As well as variation in their effectiveness, there has been inconsistency in provision-some maternity services do not have an MSLC and women using services can be unaware of its existence where there is one. Our job to use women's feedback to shape services and to actively involve women in improvement work is therefore far from complete.

Yet something exciting is underway. The modern MSLC is having a resurgence, with some outstanding examples of genuine collaborative work that truly benefits local women through health professionals being directly able to understand their needs. With the eagerly awaited publication of NHS England guidance in February 2017-which will relaunch MSLCs as maternity voices partnerships (MVPs), although some MSLCs have pre-empted the guidance and already taken up this revamped name and role-the opportunity to share and spread this success is upon us.

Guidance is extremely valuable, but we know it can take years for guidance to be implemented so I hope that sharing some of my experiences of the practicalities of MVP work may help others see their value. At my own trust I am the obstetrician member of Kingston Maternity Voices. We meet quarterly at the trust. This group is still very much in development after having undergone NCT Voices training earlier this year.

In contrast, Bromley Maternity Voices (MSLC) has been up and running for three years, and I was delighted to be invited to visit a meeting recently by their lay chair Laura James to see how a more mature maternity voices partnership functions. Bromley Maternity Voices holds six meetings a year of two hours' duration, each one held in different children and family centres in the community.

Simple practical information about parking spaces and the provision of crèche spaces for children under 5 were circulated with the meeting dates, making it easier for service users to attend. There were about 20 people in attendance of all different backgrounds and areas of expertise. The local trust and commissioners were well represented, as well as at least six user reps. Health visitors were represented and there is a GP member of the group, although they were unfortunately unable to attend that meeting. There was a student midwife-involvement of students is critical so that this work becomes an accepted part of the status quo. The duration of the meeting was sufficient to allow some genuine thinking time and the agenda was wide and varied, ranging from a local initiative to support new mums with mental health needs to an update on national policy.

The meeting started with us being asked to introduce ourselves and to "name one thing you've done recently (personally or professionally) that you are proud of." This set a level playing field from the start of the meeting. A coffee morning had been held the previous week and new parents were asked then for feedback under two headings:

Congratulations, what did you like about your maternity care?

What improvements would you suggest?

Women had written comments on post-it notes under these two headings and we broke into two groups to categorise the feedback according to theme and to consider actions that might address any problems. The director of midwifery explained that the flip charts are then taken back to the maternity service, where they are laminated and displayed. She remarked that she discovered having women's comments up in their own handwriting had a greater impact than typed up feedback, as staff comment that it feels more real.

An update was given on the actions resulting from similar discussions at a previous meeting. Women had experienced difficulty booking antenatal appointments, so the service had made a change and already the feedback from users had improved. This positive news being relayed back to staff was helping to embed the changes. An update was provided about the labour line, a dedicated phone line that provides the continuity of speaking to the same midwife when women in labour ring the hospital, which had also been introduced as the result of feedback.

There was a broader discussion about feedback mechanisms to identify gaps in the service, and ideas of how to fill these gaps (with proposals for a " walk the patch ") focused on neonatal parents and some targeted feedback of fathers. Co-design of information leaflets for women was a topic that carried on into the following day when the commissioner attended the South East London Maternity Network board meeting. Laura James told me afterwards that some meetings are more action focused, while others are more reflective.

To be most effective, this collaborative co-design work needs to happen at the local level. For example, King's College Hospital NHS Foundation Trust is one trust, but it currently has two MSLCs, one for each obstetric unit and community hub-King's MSLC is linked to Denmark Hill and Bromley MSLC to the Princess Royal University Hospital. Laura says that "given the geographical area and different demographics, we couldn't do the local work we do or include the service users and reps if it was one giant MSLC for both sites." Bromley's clinical commissioning group (CCG) has been very supportive of this approach.

Other professionals have written about the positive contribution the MSLC makes to their work: "To me it is women ensuring the services we provide are relevant to the changing needs of our community," says a consultant obstetrician. "A positive driving force, for me personally the MSLC has inspired and motivated me to keep going and provided me with courage and resilience when times are tough," comments a consultant midwife.

Bromley is far from alone: up and down the country there is an increasing number of MVPs with a strong sense of shared energy and enthusiasm and a desire to improve services. It is important to note that this sort of valuable co-production and improvement work doesn't happen easily. It can be a difficult task for service user leads who have been functioning in local isolation to get the MVP up and running well; they need the support and respect of local healthcare professionals. If there is frustration locally, health professionals could approach the chair of the MVP and ask "How can I best help the MVP achieve more? Is there a project or sub-group that I could join and support?" Another critical element to an effective MVP is funding; the most successful MSLCs, such as Bromley and Reading, are financially supported by the local CCG and have leaders/chairs who receive some modest financial recognition for the work they do.

If we are serious about really putting patients at the heart of what we do and practising "no decision about me without me," then as professionals we need to have the courage to take that first step of inviting patients into our world and working alongside them. As we often say in #MatExp: "No hierarchy, just people." Maybe, as Laura James recently tweeted, it will no longer be "You said, we did," but time for "I said, I did." Together, I believe we can make this happen.
Florence Wilcock is a consultant obstetrician at Kingston Hospital with an interest in intrapartum care and improving maternity experience. She is chair of the London Maternity Strategic Clinical Network user experience subgroup and co-founder of #MatExp, a grassroots movement aimed at improving maternity experience for families and the staff who care for them. She can be found on twitter @FWmaternitykhft
Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests:
* Employed by Kingston Hospital NHS Foundation Trust, associated with London Maternity Strategic Clinical Network, current project funded by NHS England Challenge Fund.
* Founder of MatExp-a change platform-with Gill Phillips of Nutshell Communications Ltd with whom I work closely.
* I receive no financial benefit from any of the above apart from my employer

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Florence Wilcock: Maternity voices partnerships-"No hierarchy, just people" - The BMJ

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"No decision about me without me" has been a key element of NHS rhetoric since 2012. It's a great idea, however, the current reality is that as a universal principle this remains far from true. Why is there still such a struggle to make this happen?

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Sometimes we need to “break the rules” to improve healthcare

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Sometimes we need to “break the rules” to improve healthcare

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To truly understand and improve outcomes, we will need to be brave

The publication last week of the shows that there is significant variation in practice and outcomes across maternity services in Britain. The provision of this baseline level of data should in theory allow us to monitor the improvements that are being made through the National Maternity and Perinatal Audit (NMPA) Maternity Transformation Programme and the Maternal and Neonatal Health Safety Collaborative. Yet to truly understand and reduce variation we will need to be brave. We will need to take a critical look at ourselves and our practice and understand the human factors that make us slow to change.

Healthcare is on a continuous journey of change. Change over time is partly due to new medical evidence-although translation from evidence to clinical practice is not straightforward. Studies show that there is an average time lag of 17 years . Change is in part limited by professionals' understanding of new evidence, habit, and unconscious bias; patients also bring their own perspectives and expectations.

Individual courage and initiative are needed if we are to make change in complex systems, which tend to preserve the status quo. A key example mentioned in the report is the wide regional variation in the rate of skin to skin contact in the first hour of birth, despite there being longstanding evidence of the benefits of this for both mother and baby. Even as far back as 2004, NICE guidance recommended that healthcare professionals should facilitate early skin to skin contact between newborn babies and mothers at caesarean births.

An inspirational midwife I know, Jenny Clarke @JennytheM, became so frustrated at the lack of skin to skin contact in the operating theatre in which she worked that she climbed a ladder and wrote on the wall "Is the baby skin to skin?"

Breaking the "rules" (what is accepted) and exposing yourself to the possibility of negative fallout is a personal risk. Yet the ultimate result here was a permanent whiteboard in the theatre asking the question "is the baby skin to skin?" and a change in behaviour, so that skin to skin became the norm at Jenny's hospital, benefiting many mothers and babies.

The impact of Jenny's actions reaches beyond her own trust. She continues to campaign for skin to skin contact by volunteering to speak at events, writing blogs, rapping, and spreading ideas via social media. Talking with Jenny about her work encouraged me to change my own practice. I also started to question and break "rules" little by little.

I started with skin to skin contact at caesarean section births, then new guidance was issued on the benefits of delayed umbilical cord clamping so I started that too. Then I started to question why I handed the baby to a midwife to take to the mother after caesarean sections, so I started passing the baby straight to the mother for skin to skin contact as soon as it was born-just as we would for a vaginal birth. As I pushed these small boundaries, subsequent improvements we could make began to unfold too. If the baby is skin to skin with its mother and we are delaying clamping the umbilical cord, then the next logical step was that the birth partner could cut the cord as this procedure was no longer in the sterile surgical field.

As I change practice, I also hope that I am acting as a role model for others to do the same. I know that we are currently a long way from achieving 100% skin to skin contact in the first hour. The NMPA recommends that "Clinicians should make every possible effort for all babies to have skin to skin contact with their mothers within one hour of birth, where the condition of mother and baby allows. For babies who are to be admitted to a neonatal unit, all efforts should be made to offer skin to skin contact prior to transfer of the baby where the baby's clinical condition allows." I really hope that this statement and the report make us reexamine our practice. Hopefully, we'll then be brave enough, as Jenny was, to depart from our routine habits and take steps forward that will transform maternity care for the better.
Florence Wilcock is a consultant obstetrician at Kingston Hospital with an interest in intrapartum care and improving maternity experience. She is chair of the London Maternity Strategic Clinical Network user experience subgroup and co-founder of #MatExp, a grassroots movement aimed at improving maternity experience for families and the staff who care for them. She can be found on Twitter @FWmaternitykhft
Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests:
* Employed by Kingston Hospital NHS Foundation Trust, associated with London Maternity Strategic Clinical Network, current project funded by NHS England Challenge Fund.
* Founder of MatExp-a change platform-with Gill Phillips of Nutshell Communications Ltd with whom I work closely.
* I receive no financial benefit from any of the above apart from my employer.

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Florence Wilcock: Sometimes we need to "break the rules" to improve healthcare - The BMJ

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To truly understand and improve outcomes, we will need to be brave The publication last week of the shows that there is significant variation in practice and outcomes across maternity services in Britain.

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#ConnectingForGood 'Walk and Talk' eats meetings for breakfast 😉: by Gill Phillips on @stellerstories

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Share Your World: Share and discover great experiences from cool places!

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Language matters! A key theme of Whose Shoes

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Language matters! A key theme of Whose Shoes

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DS Colette Lloyd - language IMG_5635.PNG

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Cartoon - your call is important to us.JPG

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The Obs Pod, Episode 61 - What matters to you? Exploring listening

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The Obs Pod, Episode 61 - What matters to you? Exploring listening

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Find out about the What Matters to you? campaign.
This episode focuses on leadership on the labour ward

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Episode 61 What Matters To you

Find out about the What Matters to you? campaign.
This episode focuses on leadership on the labour ward.
Although this episode was prepared partly as a talk for the RCOG labour ward leads course, a course held annually for all O&G senior trainees, much of what I talk about is applicable to anyone working in maternity care.

If you are not working in maternity I do hope you will still explore the resources below ,as well as the 4 levels of listening video here:
https://www.whatmatterstoyou.scot/resources/
https://www.whatmatterstoyou.scot/deep-listening/

You can find out more about me on Twitter @FWmaternity & @TheObsPod as well as Instagram @TheObsPod please check out #MatExp matexp.org.uk for ideas about how to improve maternity experience.

My beautiful artwork is thank to Anna Geyer www.newpossibilities.co.uk

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Episode 61 What Matters To you - The Obs Pod

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Find out about the What Matters to you? campaign.This episode focuses on leadership on the labour ward.Although this episode was prepared partly as a talk for the RCOG labour ward leads course, a course held annually for all O&G senior trainee...

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ALL of our podcast guests are inspirational, achieving so much in so many different fields,

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ALL of our podcast guests are inspirational, achieving so much in so many different fields,

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I couldn't possibly capture all the awards and honours received by our fantastic podcast contributors - here are just a few!

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Key links and resources are mentioned in the programme notes of each podcast episode

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Key links and resources are mentioned in the programme notes of each podcast episode

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An award-winning approach to coproduction. Gill Phillips is co-founder of #MatExp

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If you are enjoying the podcast, you will also love our 'Poet's Corner' event in a tent for #FabChange21

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Well this is your opportunity to catch up and watch at your leisure.

You can watch the video here

This is a summary of the Tent chat:

What does poetry mean to you?

Poetry for me is a good way to reflect on my experiences and what I want to do going forward.

I enjoy a bit of a creative buzz, not something i usually do as a doctor writing a poem so it's fun but also thought provoking

The first poem emphasises the need for meaningful daytimes in care homes and the second, reminds us to look at what we do through the eyes of the people we serve.

I think having a mix of poems and scenarios has led to some great discussion during our WhoseShoes events. I enjoyed writing a couple of poems myself too!

Silly Rhymes:

I guess my attempts at poetry are silly rhymes and it's fun for me to write them. Spike Milligan was one of my I do's.

Rachel the book is fabulous and such a great idea, everyone contributing means they have buy in and interest in the story. that is also how quality improvement needs to be people of all backgrounds, and walks of life working together

silly rhymes are the best we had someone write a wonderful limerick in our mind and body project

Have just realised Lilly rhymes with silly so will get my thinking hat on.

it also rhymes with Caerphilly which is a bit cheesey

You take the biscuit.

I am now thinking of mice! all this talk of cheese and biscuits

I'll drink to that... Hovis, it's terrific toasted.

biscuit rhymes with risk it

Throw away the rule books....risk it for a biscuit!

The Power of Poetry & The Little Things are the Big Things:

The little things are the big things, so go the extra mile. The best way to make someone's day, is to leave them with a smile

I know this may sound silly; but I'm in awe of Mr Lilley,

My Youngest daughter's middle name is the name of the midwife that took care of me throughout my labour

Little things are the big things/At least that's what they say/But big things only get little, when you're far away/The closer you get/The more you can bet/You'll do better/Know better/See better/...in every way!

The Blonde

Being creative

Thats lovely Dani and will be something that gives the midwife pleasure that she did a good job; like the poem Roy :-)

I'm sorry I'm late joining...I've written a poetry book about the pandemic which helped me to cope with being a physician and be a 'normal' mum and wife..

That sounds amazing Helen - is it available on Amazon etc?

Book Here: https://smile.amazon.co.uk/Reflections-through-Waves-Poems-Pandemic/dp/1838069291/ref=sr_1_1?keywords=Helen+Lane+poetry&qid=1638219335&sr=8-1

That's an amazing story of poetry writing giving you an outlet and expression of emotion and ability to unload your feelings

wow incredible work Helen a wonderful story thank you for sharing

Thank you for sharing, Helen, that was an incredible story

permission to be human and cry is so important

Validating other's emotions and thoughts can be really powerful

I'm no good at links...it's called Reflections through the waves and is on Amazon

I love that, thank you Rachael

That's fab Rachel

such talent love it Carol

I love that

Brilliant; very poignant

Thank You's:

Thank you Gill et al, what a great session

Fantastic poems!

Ace event in a tent and powerful poetry

thank you

Thank you I have loved the the Tent 5 experience!

I need to disappear too....thanks all !

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Well this is your opportunity to catch up and watch at your leisure. You can watch the video here This is a summary of the Tent chat: What does poetry mean to you? Poetry for me is a good way to reflect on my experiences and what I want to do going forward.

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Thrilled to receive a really positive review in The Obstetrician and Gynaecologist RCOG journal !

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Thrilled to receive a really positive review in The Obstetrician and Gynaecologist RCOG journal !

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Its sadly not open access so here is a photo for those that can't access ...

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Thrilled with this review from @RCObsGyn professional magazine #TOG #MatExp #obgyntwitter #MedTwitter

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Thrilled with this review from @RCObsGyn professional magazine #TOG #MatExp #obgyntwitter #MedTwitter https://t.co/V5ukn4obZO

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Thrilled with this review from @RCObsGyn professional magazine #TOG #MatExp #obgyntwitter #MedTwitter pic.twitter.com/V5ukn4obZO
— Florence (she/her) (@TheObsPod) May 10, 2021

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Thrilled with this review from @RCObsGyn professional magazine #TOG #MatExp #obgyntwitter #MedTwitter https://t.co/V5ukn4obZO

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Thrilled with this review from @RCObsGyn professional magazine #TOG #MatExp #obgyntwitter #MedTwitter https://t.co/V5ukn4obZO

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Thrilled with this review from @RCObsGyn professional magazine #TOG #MatExp #obgyntwitter #MedTwitter

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Keeping difficult conversations going in the pandemic

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Keeping difficult conversations going in the pandemic

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We recently ran a virtual Whose Shoes? event around baby loss, in conjunction with Gloucestershire maternity team and Sands bereavement charity. It was originally planned as the second of a 2-part event to use Whose Shoes to test out the 'National Bereavement Care Pathway' (NBCP) and identify any gaps.

'Event 1' went ahead on 6 March 2020, in Colchester ...

Thanks to @MarcHarder for being the guiding light in the implementation of this pathway so that there aren't trusts left behind.
- Carolyn Fahm (@CarolynFahm) March 6, 2020

The Colchester event was extremely powerful, with a lot of buzz in the room, hugs, good support and some powerful outcomes.
That sadly feels like a different world now, doesn't it?

Anna Geyer, Director of New Possibilities, made this film of the event:

'Event 2' in Gloucestershire was meant to follow a couple of weeks later, but we all know what happened in the meantime. Covid struck and it took us 10 months to work our way through how to run an event of this importance and this sensitivity online.

I will fast forward and bypass how we developed #VirtualWhoseShoes, and all the twists and turns along the way ...

Suffice to say that it was thanks to the dedication and perseverance of everybody that we managed to make the event happen. Dawn Morrall, Assistant Director of Midwifery & Nursing and the Clinical Improvement Lead of the South West Clinical Network, checked out the emerging virtual experience, and insisted that it should remain as a Whose Shoes event.

Dawn is one of the people who really 'gets' Whose Shoes. Dawn also has a great track record of following up on the quality improvement actions in order to get the most from the events ... so we love working with the team in Gloucestershire!

I am hoping Dawn will write a case study about the outcomes from our previous events - and from this one in due course!

Online sessions take a huge amount of preparation. We had a lot of supporters, both in the room and following us on Twitter. #FabObs Flo Wilcock, consultant obstetrician, and Marc Harder had been the people who originally initiated the events:

Despite detailed preparation over many months, we didn't really know how many people to expect, or the mix of people. Healthcare professionals are obviously so busy at the moment, with the pressures on the NHS due to COVID; people are feeling isolated during lockdown and missing the normal support available from family and friends. They are also 'Zoomed out', as the pandemic drags on.

It is hard for any new parents / parents-to-be at the moment, let alone people experiencing bereavement, so it was wonderful that Kerri and many others were keen to join. THANK YOU!

I was amazed. We had about 60 people on the call. It was wonderful and very moving to see so many bereaved parents joining us, alongside healthcare professionals, chaplains, people from SANDS, volunteers, medical photographers, a GP, a funeral director, and many more...
We started off with a gentle activity - colouring! It helps people learn Zoom skills that we then use later in the session to annotate certain screens.
But it also feels relaxed, encourages people to turn on their mics and speak, adds a bit of colour and creativity and helps set the right tone for the session.

Coproduction in action - colouring the Welcome screen!

Clare Worgan from Sands (stepping in for Marc Harder, who has championed this work - get well soon, Marc!) gave a wonderful introduction about the National Bereavement Care Pathway, sharing many links and resources, including NBCP e-learning modules. A bereaved mum herself, Clare is passionate about bereavement care. Her authenticity and keenness to help others shone through.

And then a very moving introduction from Deborah Lee, the Chief Executive. Again Deb spoke from the heart, welcoming everyone to the session but also embodying our #NoHierarchyJustPeople mantra by sharing her lived experience story of baby loss.

It was wonderful that she was able to prioritise sharing this vulnerability and helping others, alongside juggling vital meetings to run the hospital!
We all really appreciated it and it set the context for the event perfectly.
Deb has generously given us permission to share her talk, as appropriate, at any future sessions too.

It was very moving to hear Deb talk about her experience of losing two babies before she went on to have healthy children, now teenagers. All birth stories are important. Hearing Deb remembering so clearly the things that made her experience better or worse, just as vibrantly as a mum talking about a very recent birth experience, brings home just how important things such as language, compassion, 'personalise rather than medicalise', and the other key themes of our #MatExp work really are.

Whose Shoes is constantly evolving. It is all crowdsourced by real people and their experiences.

Would you want to hear a group of student medics standing at the end of your bed, referring to you as 'an interesting case', as you come to terms with the loss of your child?

Would you want to receive a stark letter telling you not to get pregnant again until you come into the hospital to discuss your case ... especially if you are already pregnant?

It is fantastic that we have been able to suggest practical solutions, such as the example set by Leigh Kendall, working with Kingston Hospital and St George's, where sadly her baby son Hugo lived and died, to write more empathetic letters to bereaved parents. Please check out #HugosLegacy.

You can read the other 'Nobody's patient' case studies here: http://www.londonscn.nhs.uk/publication/maternity-co-designed-case-studies-nobodys-patient/

Leigh inspired the work we did around neonatal care, one of the three key themes of #NobodysPatient.

Here is Leigh's very moving blog, reflecting on our #NobodysPatient workshop at St George's hospital:

Catherine MacLennan, another bereaved mum, was similarly the catalyst for our innovative work around second trimester loss, which is sadly an area of care that is missed out from many 'pathways'.

I am always in awe of how many bereaved parents use their grief to create something so positive.

We had the privilege of welcoming about 15 passionate bereaved parents/ couples in Gloucestershire, reaching out to help others. Many of them spoke about special people who had helped them along the way - "life savers" is a word frequently used. It reminded me of Catherine's 'special people' poem.

Catherine's 'Special People poem' reaching paramedics at London Ambulance Service

Something that I found particularly moving in our Gloucestershire event, was a mother talking about how, when her baby was sadly stillborn, she had made small matching dolls, one to place inside the child's coffin and one to hang on the Christmas tree as a symbol of hope and for any subsequent children to enjoy and get to know and love their sibling.

I love the connections. 💜
The potential connections. 💜

I think my 'goosebumps moment' was the bereaved mum who'd made paired dolls.
One for the baby's coffin; one for perpetuity on the 🎄

The scope to link with @ShinePNDsupport & the fabulous work she's doing 🍋💡🍋 #MatExp pic.twitter.com/Uk0RJzuL2A
- Gill Phillips (@WhoseShoes) January 22, 2021

We had some fantastic conversations around how best to help people remember their babies and how this might change according to the stage of pregnancy at which the loss occurred.
I have been able to follow this up, as part of my own personal pledge, by linking wonderful peer support people doing great work in this area.

Gill Phillips linking Lauraine, founder of 'Shine' and Leanne , founder of 'By Your Side'.

Watch this space for further links between Lauraine Cheesman (Shine, Gloucs) and Leanne Howlett (By Your Side, Warwickshire)!
I really love making these links!

There were so many thought-provoking conversations, sparking the 'lemon lightbulbs' that stay with people and change practice.
Would you want the doctor's comment on your sicknote to simply say 'Depression' when you have just lost your child, without consulting you? How would you feel having to handle this when you talk to your employer, sometimes without maternity leave if your pregnancy ends before 24 weeks?

These are just a small sample of the situations people are regularly facing.

Conversely, we heard how staff are generally extremely compassionate, and what a difference this can make, including giving people the courage to get pregnant again and try for 'that happy ending'.

As always, we used a variety of scenarios and poems to generate the conversations to explore people's experiences and how services and support could be improved. Bereavement midwife, Nikki Dobson proved to be a superstar. She and her colleagues had put in so much time to do a gap analysis, identifying areas where feedback suggested improvements could be made.

Thanks Dawn. It was a great planning meeting yesterday. Attention to detail in selecting scenarios & poems that match to the in-depth gap analysis Nikki did. These sessions are all about careful planning, true listening and working together towards real outcomes. 👍🏼 #WhoseShoes pic.twitter.com/7gEdH7gp0Y
- Gill Phillips (@WhoseShoes) January 13, 2021

We wanted to get the most out of the opportunity afforded by bringing all these wonderful people from different perspectives together. The team had identified key themes and we selected the most relevant Whose Shoes scenarios accordingly, including:

* Some areas in fetal loss / medicine identified as needing improvement
* Care after discharge
* Delivery suite gap analysis
* Antenatal screening - support for families in future pregnancies
* Ultrasound
* GPs
* Supporting dads and partners

Thank you for recognising partners as well as dads. It makes such a difference.
- Kate Grimes (@Kate_Grimes_) January 22, 2021

Nikki writes wonderful poems and she generously read two of them live during our session. We have always used poems as a way of connecting with people differently in our WhoseShoes sessions.

As always, Anna's images were superb - and all the more so, being able to capture the conversations live during the session, just as we do 'in the room'. Sometimes we have the opportunity of a visual learning synthesis too, but each event is different.

You can read Anna's reflections here: https://www.linkedin.com/pulse/hearing-voices-bereaved-families-anna-geyer/
The outcomes are extraordinary and just as powerful as any other events that we run.
It is totally draining facilitating these online sessions but incredibly rewarding. The chat in the Zoom 'chat room' was phenomenal - full of wonderful insights, comments and useful links. The atmosphere was warm and supportive. We were able to 'save' the chat in all its richness, as another output from the session to feed into the continuing quality improvement journey.

Loads of ideas and buckets full of passion just need to work out how to put it all into action. #wevegotthis
- Laura Ferguson (@LauraFerguson0) January 21, 2021

And, of course, for all events the most important outcomes happen later - people following through and implementing their pledges, connecting, building the momentum for positive change.

Brilliant illustrations, really encompassing all the emotions and struggles surrounding baby loss
- Sands (@SandsUK) January 22, 2021

I collated as many of the pledges and specific improvement ideas from the session as I could. SO many. This does not mean that the bereavement care in Gloucestershire is poor. On the contrary, it means they are open to genuine coproduction, listening and finding out how they can make their service even better.

The praise - and indeed love - for Nikki, Dawn, the medical photographers, fetal medicine staff and many others was incredibly strong . I was moved by everyone's determination to work together and support each other.

I am so grateful to have been a part of this today and excited to get to work on our pledges 💖
- Laura Ferguson (@LauraFerguson0) January 21, 2021

Kerri thank you and please join us to follow up on all our pledges we are all determined @daniellerees9 @NikkiDobson1 to take forward the pledges and quality improvements from today
- Dawn Morrall (@dawn_morrall) January 21, 2021

There seems to be a lot of interest in Whose Shoes around how we can better support parents and families suffering baby loss, building further on the various maternity projects we have done, which Colchester, Gloucestershire and about 70 other NHS trusts have used so powerfully in quality improvements.

Next stop, Lincolnshire? A few of their team joined the Gloucestershire session, which is always the best way to learn about
Whose Shoes and build the networks. We've done some great work with Lincs before!

The energy is growing ...

Since the Gloucestershire event, I have had several extraordinary opportunities to join conversations, hear different perspectives and ensure that our Whose Shoes material remains topical, authentic and able to spark the understanding that is needed.

I was privileged to join a very powerful and informative Zoom session, led by paula abramson Alex Mancini-Smith and Nadia Leake .

Bereavement Training International - Bereavement counsellor training for groups at their place of employment

Wonderful staff from the South-West neonatal teams came together to learn more about baby loss and its impact, and Nadia courageously shared her lived experience story, helping people understand the special grief and complexity of losing one or more babies in multiple pregnancy.
I recommend this training highly to all involved in perinatal care.

I also joined a webinar hosted by Kathy Fray in New Zealand, with guest speaker Joann O'Leary talking with huge insight about pregnancy after loss, another complex 'taboo' topic which is not discussed enough.

I am being asked about some of the 'end of life care' / palliative care work we have done in other areas - eg with London Ambulance Service. I am having some interesting conversations with People from NHS England / Improvement at the moment about how all of this work could be better supported.

I am currently supporting a wonderful doctor, Nikki Crowley, to implement Family Integrated Care in a London hospital; the #NobodysPatient resources will be central to our collaboration. Networking is proving super important here, as some wonderful people come together to help.

And ... latest news ... we are currently looking at innovative ways to help people follow up Whose Shoes pledges, if things get 'stuck' in any way, using #LiberatingStructures. With thanks to Lyse Edwards. Contact me @WhoseShoes if you want to know more.
I will leave you with a fantastic quote from Nadia Peake, the bereaved mum of twin baby Raif, who stole the show at the South West Neonatal event.
So, lots happening. But it is only be happening because PEOPLE are stepping forward to make a difference, which is hugely rewatding.

We recently ran a virtual Whose Shoes? event around baby loss, in conjunction with Gloucestershire maternity team and Sands bereavement charity. It was originally planned as the second of a 2-part event to use Whose Shoes to test out the 'National Bereavement Care Pathway' (NBCP) and identify any gaps.

'Event 1' went ahead on 6 March 2020, in Colchester ...

Thanks to @MarcHarder for being the guiding light in the implementation of this pathway so that there aren't trusts left behind.
- Carolyn Fahm (@CarolynFahm) March 6, 2020

The Colchester event was extremely powerful, with a lot of buzz in the room, hugs, good support and some powerful outcomes.
That sadly feels like a different world now, doesn't it?

Anna Geyer, Director of New Possibilities, made this film of the event:

'Event 2' in Gloucestershire was meant to follow a couple of weeks later, but we all know what happened in the meantime. Covid struck and it took us 10 months to work our way through how to run an event of this importance and this sensitivity online.

I will fast forward and bypass how we developed #VirtualWhoseShoes, and all the twists and turns along the way ...

Suffice to say that it was thanks to the dedication and perseverance of everybody that we managed to make the event happen. Dawn Morrall, Assistant Director of Midwifery & Nursing and the Clinical Improvement Lead of the South West Clinical Network, checked out the emerging virtual experience, and insisted that it should remain as a Whose Shoes event.

Dawn is one of the people who really 'gets' Whose Shoes. Dawn also has a great track record of following up on the quality improvement actions in order to get the most from the events ... so we love working with the team in Gloucestershire!

I am hoping Dawn will write a case study about the outcomes from our previous events - and from this one in due course!

Online sessions take a huge amount of preparation. We had a lot of supporters, both in the room and following us on Twitter. #FabObs Flo Wilcock, consultant obstetrician, and Marc Harder had been the people who originally initiated the events:

Despite detailed preparation over many months, we didn't really know how many people to expect, or the mix of people. Healthcare professionals are obviously so busy at the moment, with the pressures on the NHS due to COVID; people are feeling isolated during lockdown and missing the normal support available from family and friends. They are also 'Zoomed out', as the pandemic drags on.

It is hard for any new parents / parents-to-be at the moment, let alone people experiencing bereavement, so it was wonderful that Kerri and many others were keen to join. THANK YOU!
I was amazed. We had about 60 people on the call. It was wonderful and very moving to see so many bereaved parents joining us, alongside healthcare professionals, chaplains, people from SANDS, volunteers, medical photographers, a GP, a funeral director, and many more...

We started off with a gentle activity - colouring! It helps people learn Zoom skills that we then use later in the session to annotate certain screens.
But it also feels relaxed, encourages people to turn on their mics and speak, adds a bit of colour and creativity and helps set the right tone for the session.

Coproduction in action - colouring the Welcome screen!

Clare Worgan from Sands (stepping in for Marc Harder, who has championed this work - get well soon, Marc!) gave a wonderful introduction about the National Bereavement Care Pathway, sharing many links and resources, including NBCP e-learning modules. A bereaved mum herself, Clare is passionate about bereavement care. Her authenticity and keenness to help others shone through.

And then a very moving introduction from Deborah Lee, the Chief Executive. Again Deb spoke from the heart, welcoming everyone to the session but also embodying our #NoHierarchyJustPeople mantra by sharing her lived experience story of baby loss.

It was wonderful that she was able to prioritise sharing this vulnerability and helping others, alongside juggling vital meetings to run the hospital!
We all really appreciated it and it set the context for the event perfectly.
Deb has generously given us permission to share her talk, as appropriate, at any future sessions too.

It was very moving to hear Deb talk about her experience of losing two babies before she went on to have healthy children, now teenagers. All birth stories are important. Hearing Deb remembering so clearly the things that made her experience better or worse, just as vibrantly as a mum talking about a very recent birth experience, brings home just how important things such as language, compassion, 'personalise rather than medicalise', and the other key themes of our #MatExp work really are.

Whose Shoes is constantly evolving. It is all crowdsourced by real people and their experiences.

Would you want to hear a group of student medics standing at the end of your bed, referring to you as 'an interesting case', as you come to terms with the loss of your child?

Would you want to receive a stark letter telling you not to get pregnant again until you come into the hospital to discuss your case ... especially if you are already pregnant?

It is fantastic that we have been able to suggest practical solutions, such as the example set by Leigh Kendall, working with Kingston Hospital and St George's, where sadly her baby son Hugo lived and died, to write more empathetic letters to bereaved parents. Please check out #HugosLegacy.

You can read the other 'Nobody's patient' case studies here: http://www.londonscn.nhs.uk/publication/maternity-co-designed-case-studies-nobodys-patient/

Leigh inspired the work we did around neonatal care, one of the three key themes of #NobodysPatient.

Here is Leigh's very moving blog, reflecting on our #NobodysPatient workshop at St George's hospital:

Catherine MacLennan, another bereaved mum, was similarly the catalyst for our innovative work around second trimester loss, which is sadly an area of care that is missed out from many 'pathways'.

I am always in awe of how many bereaved parents use their grief to create something so positive.

We had the privilege of welcoming about 15 passionate bereaved parents/ couples in Gloucestershire, reaching out to help others. Many of them spoke about special people who had helped them along the way - "life savers" is a word frequently used. It reminded me of Catherine's 'special people' poem.

Catherine's 'Special People poem' reaching paramedics at London Ambulance Service

Something that I found particularly moving in our Gloucestershire event, was a mother talking about how, when her baby was sadly stillborn, she had made small matching dolls, one to place inside the child's coffin and one to hang on the Christmas tree as a symbol of hope and for any subsequent children to enjoy and get to know and love their sibling.

I love the connections. 💜
The potential connections. 💜

I think my 'goosebumps moment' was the bereaved mum who'd made paired dolls.
One for the baby's coffin; one for perpetuity on the 🎄

The scope to link with @ShinePNDsupport & the fabulous work she's doing 🍋💡🍋 #MatExp pic.twitter.com/Uk0RJzuL2A
- Gill Phillips (@WhoseShoes) January 22, 2021

I have been able to follow this up, as part of my own personal pledge, by linking wonderful peer support people doing great work in this area.
We had some fantastic conversations around how best to help people remember their babies and how this might change according to the stage of pregnancy at which the loss occurred.

Gill Phillips linking Lauraine, founder of 'Shine' and Leanne , founder of 'By Your Side'.

Watch this space for further links between Lauraine Cheesman (Shine, Gloucs) and Leanne Howlett (By Your Side, Warwickshire)!
I really love making these links!
Would you want the doctor's comment on your sicknote to simply say 'Depression' when you have just lost your child, without consulting you? How would you feel having to handle this when you talk to your employer, sometimes without maternity leave if your pregnancy ends before 24 weeks?

There were so many thought-provoking conversations, sparking the 'lemon lightbulbs' that stay with people and change practice.

These are just a small sample of the situations people are regularly facing.

Conversely, we heard how staff are generally extremely compassionate, and what a difference this can make, including giving people the courage to get pregnant again and try for 'that happy ending'.

As always, we used a variety of scenarios and poems to generate the conversations to explore people's experiences and how services and support could be improved. Bereavement midwife, Nikki Dobson proved to be a superstar. She and her colleagues had put in so much time to do a gap analysis, identifying areas where feedback suggested improvements could be made.

Thanks Dawn. It was a great planning meeting yesterday. Attention to detail in selecting scenarios & poems that match to the in-depth gap analysis Nikki did. These sessions are all about careful planning, true listening and working together towards real outcomes. 👍🏼 #WhoseShoes pic.twitter.com/7gEdH7gp0Y
- Gill Phillips (@WhoseShoes) January 13, 2021

We wanted to get the most out of the opportunity afforded by bringing all these wonderful people from different perspectives together. The team had identified key themes and we selected the most relevant Whose Shoes scenarios accordingly, including:

* Some areas in fetal loss / medicine identified as needing improvement
* Care after discharge
* Delivery suite gap analysis
* Antenatal screening - support for families in future pregnancies
* Ultrasound
* GPs
* Supporting dads and partners

Thank you for recognising partners as well as dads. It makes such a difference.
- Kate Grimes (@Kate_Grimes_) January 22, 2021

Nikki writes wonderful poems and she generously read two of them live during our session. We have always used poems as a way of connecting with people differently in our WhoseShoes sessions.

As always, Anna's images were superb - and all the more so, being able to capture the conversations live during the session, just as we do 'in the room'. Sometimes we have the opportunity of a visual learning synthesis too, but each event is different.
The outcomes are extraordinary and just as powerful as any other events that we run.
You can read Anna's reflections here: https://www.linkedin.com/pulse/hearing-voices-bereaved-families-anna-geyer/

It is totally draining facilitating these online sessions but incredibly rewarding. The chat in the Zoom 'chat room' was phenomenal - full of wonderful insights, comments and useful links. The atmosphere was warm and supportive. We were able to 'save' the chat in all its richness, as another output from the session to feed into the continuing quality improvement journey.

Loads of ideas and buckets full of passion just need to work out how to put it all into action. #wevegotthis
- Laura Ferguson (@LauraFerguson0) January 21, 2021

And, of course, for all events the most important outcomes happen later - people following through and implementing their pledges, connecting, building the momentum for positive change.

Brilliant illustrations, really encompassing all the emotions and struggles surrounding baby loss
- Sands (@SandsUK) January 22, 2021

I collated as many of the pledges and specific improvement ideas from the session as I could. SO many. This does not mean that the bereavement care in Gloucestershire is poor. On the contrary, it means they are open to genuine coproduction, listening and finding out how they can make their service even better.

The praise - and indeed love - for Nikki, Dawn, the medical photographers, fetal medicine staff and many others was incredibly strong . I was moved by everyone's determination to work together and support each other.

I am so grateful to have been a part of this today and excited to get to work on our pledges 💖
- Laura Ferguson (@LauraFerguson0) January 21, 2021

There seems to be a lot of interest in Whose Shoes around how we can better support parents and families suffering baby loss, building further on the various maternity projects we have done, which Colchester, Gloucestershire and about 70 other NHS trusts have used so powerfully in quality improvements.

Kerri thank you and please join us to follow up on all our pledges we are all determined @daniellerees9 @NikkiDobson1 to take forward the pledges and quality improvements from today
- Dawn Morrall (@dawn_morrall) January 21, 2021

Next stop, Lincolnshire? A few of their team joined the Gloucestershire session, which is always the best way to learn about
Whose Shoes and build the networks. We've done some great work with Lincs before!

The energy is growing ...

Since the Gloucestershire event, I have had several extraordinary opportunities to join conversations, hear different perspectives and ensure that our Whose Shoes material remains topical, authentic and able to spark the understanding that is needed.

I was privileged to join a very powerful and informative Zoom session, led by paula abramson Alex Mancini-Smith and Nadia Leake .

Bereavement Training International - Bereavement counsellor training for groups at their place of employment

Wonderful staff from the South-West neonatal teams came together to learn more about baby loss and its impact, and Nadia courageously shared her lived experience story, helping people understand the special grief and complexity of losing one or more babies in multiple pregnancy.
I recommend this training highly to all involved in perinatal care.

I also joined a webinar hosted by Kathy Fray in New Zealand, with guest speaker Joann O'Leary talking with huge insight about pregnancy after loss, another complex 'taboo' topic which is not discussed enough.

I am being asked about some of the 'end of life care' / palliative care work we have done in other areas - eg with London Ambulance Service. I am having some interesting conversations with People from NHS England / Improvement at the moment about how all of this work could be better supported.

I am currently supporting a wonderful doctor, Nikki Crowley, to implement Family Integrated Care in a London hospital; the #NobodysPatient resources will be central to our collaboration. Networking is proving super important here, as some wonderful people come together to help.

I will leave you with a fantastic quote from Nadia Peake, the bereaved mum of twin baby Raif, who stole the show at the South West Neonatal event.
And ... latest news ... we are currently looking at innovative ways to help people follow up Whose Shoes pledges, if things get 'stuck' in any way, using #LiberatingStructures. With thanks to Lyse Edwards. Contact me @WhoseShoes if you want to know more.

So, lots happening. But it is only be happening because PEOPLE are stepping forward to make a difference, which is hugely rewatding.

Twitter - Join the@MatExpBazaar!

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Keeping the difficult conversations going in the pandemic

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We recently ran a virtual Whose Shoes? event around baby loss, in conjunction with Gloucestershire maternity team and Sands bereavement charity. It was originally planned as the second of a 2-part event to use Whose Shoes to test out the 'National Bereavement Care Pathway' (NBCP) and identify any gaps.

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Check out WhoseShoes's stories on Steller!

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A catalyst for change in health & social care. Creator of Whose Shoes? Making It Real. A co-production tool helping people work together to improve lives.

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How to define a #MatExp leader? #MatExp: by Flo W on @stellerstories

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Steller is the best way to create, share and discover fun and inspiring travel stories. With all new creative themes, layouts and fonts, it's time to tell your story the way it deserves to be told!

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Making a difference - TOGETHER

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#MatExp is a powerful social campaign involving people from all walks of life from all across the country, including some of these wonderful Tweeters

It aims to:

Encourage and empower users of maternity services to join conversations about their experiences of maternity care, and what really makes a difference to that experience.

Get health care professionals (in and beyond the NHS) and local communities to listen and work in partnership with women and families to improve maternity experiences.

To enable anyone to take action to improve maternity experience, however big or small, whoever you are: user, partner, community group or NHS staff.

You can also find out more about the campaign by watching our short film or taking a look at our very visual and creative Steller stories.

So many ideas, activities, and actions have been created since #MatExp was officially launched at NHS Change Day in March 2015. The campaign just keeps growing, so we have created a website as a central store for it all.

Want to find out what we've already achieved, and how to get involved? You're in the right place!

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It aims to: Encourage and empower users of maternity services to join conversations about their experiences of maternity care, and what really makes a difference to that experience. Get health care professionals (in and beyond the NHS) and local communities to listen and work in partnership with women and families to improve maternity experiences.

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Big thanks to Anna Geyer, New Possibilities for aiding and abetting the Wild Card Whose Shoes logo! newpossibilities.co.uk

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#NoHierarchyJustPeople - the creatives, the mavericks, the community leaders - often 'small' people punching way above their weight!

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#NoHierarchyJustPeople - the creatives, the mavericks, the community leaders - often 'small' people punching way above their weight!

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Links also to Episode 52 - maternity notes

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Don't assume - Ken will tell you why.JPG

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6. Joan Pons Laplana - creative disruption - Wild Card - Whose Shoes?

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Episode 6 - Joan Pons Laplana @RoaringNurse

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Episode 6 - Joan Pons Laplana @RoaringNurse

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Running in the shoes of a creative, innovative nurse!

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Gill Phillips:

So today we have the huge privilege of walking in the shoes of my friend Joan Pons Laplana or should I say running in his shoes? Joan is one of the most interesting JFDI people I know. We all want to support the NHS, but Joan adds fun and creativity, so that we can all feel part of his adventures. Joan's just run the London Marathon. I felt as if I was there, Joan, every step of the way. But obviously I wasn't! You were dressed as a pint of Guinness, raising money for nurses. Congratulations, Joan, you did it. You're indeed a fellow Wild Card. Thank you for joining me today, Joan and can you, tell us a bit more about yourself and what's important to you.

Joan Pons Laplana:

A bit about myself. Obviously, as you can hear by this accent, this is not a Yorkshire accent. I was born in Barcelona, Spain a while ago and, from the beginning, I was very curious. I always used to explore a lot of product like Legos and everything and I was growing up, then I also like to, to make to make a difference to to make things better. And that's why I was inclined, I used to love science, I used to love nature and everything and, and then I decided to, by chance to became something connected with health but I didn't know exactly what, but nursing basically chose me by pure chance. And then I became involved in nursing. And I did love that action. Awesome. I'm actually I don't like the same things. Um, I found the place in A&E. And destiny again, brought me to United Kingdom over 21 years ago. And really, since then, I've been trying to make a difference I've been trying to, to turn also to become a rebel and to turn the NHS upside down. Because I think the power, the structure of the power is in the wrong place, we should give more power to the frontline, and to the patient. And believe me, if we do that, I think that everything will be a lot smoother. And we will get things right a lot quicker, and a lot cheaper. That's my philosophy. And since then I've been going into this journey. And I've been, I'm not anybody quite high up in the NHS, but but social media and other platforms have given me an opportunity to be more visible and to make nursing more visible. And I took full advantage of also showcasing the NHS and the good things and sometimes the bad things, but trying always to to bring some positivity to trying to make it better. And engaging. I love engaging with people and listening and stories. I learned I'm quite good at storytelling, and that's who I am.

Gill Phillips:

So already, I think we're connecting in terms of you know, neither of us are in a position of positional power, but through social media and through the way that we kind of do things through storytelling and so on. That's what connects with people, isn't it? Yeah, I've just read your book, I think it's fantastic that you've actually managed to put your story into a book destiny and hope and I really recommend it to people, but it's full of little stories, isn't it? Stories of ups and downs and ... tell us a bit more about that.

Joan Pons Laplana:

Stories are what connects with everybody when we were born, everybody loves to go to sleep with a good story. And also the from history, from the beginning. That's how the knowledge was transmitted them from from town, village to village they used to come people telling the stories and and things. And that's why also the people learn more, the people don't learn reading PowerPoint presentations during the day, they like the stories the human side of that. And I think that's very powerful to find these connections. And these stories I thought, what I tried to do onto this book is, it is a serious book about my journey from from leaving Barcelona and my ups and downs in the NHS, but also try to give tips of what I did wrong because I did a lot of things wrong. So what can we do people who tried to make change and be a rebel, do it on a safer way because I was a bit of a kamikaze sometimes. And I think also I was one of the pioneers of using social media and all that and I just wanted to pass this knowledge . But also, I wanted to be honest, I want to open my heart and to show that nursing is a very beautiful profession, but it comes also with a price. And emotionally. It can be very hard too sometimes and basically that is the story because then I got involved in politics where I talk about while trying to make the NHS better and, but also is, is to want to show that I have no plan. I just walk my journey and take every day as it comes. And I grab every opportunity that comes to me with open arms. I, as I say, I'm very curious, I like to explore. And I like to see where it goes. I don't like to plan too much in too much I like to spontaneity and see where it goes. Sometimes it goes nowhere. A lot of times, they can go somewhere like this weekend I was in basically in every major television with my pint of beer. It's how it goes and I love that uncertainty sometimes that the you know that you make your way as you walk along.

Gill Phillips:

So how did the pint of beer come around?

Joan Pons Laplana:

Well, basically is obviously, as a nurse, I did work on the front line, I redeployed to the front line and it was quite hard for me mentally. And I started running as part of the treatment. My counsellor said why don't you run because I try other ways of, of expressing my feelings and everything. And that didn't work. And then I started running. And then I got the place in the London Marathon. Pure lottery because I applied other times and everything, never got in. And I wanted one of my bucket list is to have a Guinness World Record. And but everything, I think it was fate, everything coming to one place, because also the London marathon was moved to October, October is a month that I normally raise money for Cavell Trust, who you know is very close to my heart who help nurses going through hardship and everything come into place. And I say boy, I want to raise also visibility from Cavell Trust. But I also I want to celebrate to celebrate the fantastic work that all the frontline have done. And what can be more iconic to run as a pint of beer to celebrate and say cheers to everybody who can see and raise a smile also. But I wanted also to tell the story behind and raise awareness of mental health. And also, as I say, increased visibility of Cavell Trust. And if any nurse or any frontline out there, show me and then we'll get help. For me that's that's mission accomplished.

Gill Phillips:

Yeah, I think I mean, honestly, Joan, it's really inspirational. In that I looked at the London Marathon, I got drawn into the whole thing. I saw your interview at the beginning, you've got the combination of promotional, properly promotional, you've got Text 'CheersNurse to 70085'. And it's just such an easy thing to do. And if you're watching that, and you're drawn into the story, people are busy. And you know, you can think I can just do that. So you know, the GoFundMe or whichever kind of big fundraising campaign, people have to actually log on. And, you know, a different type of person, probably your more serious supporters, but everybody can just that cost of the pint of wasn't it just a pint of Guinness. So the Guinness Book of Records - it's clever, and it's engaging. And of all the telephone boxes, and the rhinos and elephants and the wonderful costumes and the wonderful charities. And the reality is you're competing with all these different charities. So to come up with a truly compelling story that draws people in. And one thing I loved is, you know, the whole idea of like clapping for the NHS, it's fine. But like, if we really want to support the NHS, this is a really practical thing that people can do. And the power of social media to back that.

Joan Pons Laplana:

Yeah, in a way this is the thing that I learned from my quality improvements and a lot of things that I've done. The key to succeed, any project or any campaign is simplify it and make it fun. If you have these two things together, the community they will be more successful because people are very busy in their lives. People get complicated, they are bombarded by emails and everything. But suddenly, if you see something is fun, and also, it doesn't take you more than one click or don't need to have a Master's to be able to do it. People will be a lot more engaged and everything. And I discovered that when I was a quality improvement nurse that I used to go to the wards, and everybody used to put me off and say, Oh, I'm too busy. Now I have 25 tasks, and then I realise, but if I make the project fun, and instead of trying to teach them during half an hour, if I do that five minute sessions of sepsis and everything, then I then got their attention. And people want to learn. I've discovered is people want to learn a lot. If they're having fun, they will remember you better and they will open the door and then that's when you can start engaging with them.

Gill Phillips:

Yeah, and I've got a great story to tell you actually literally from this morning and I think you'll be really chuffed with this. So in terms of a future podcast guest, I've just been chatting with Jamie Waterall, Deputy Chief Nurse, really senior person but equally engaging, caring, compassionate, you know wants to reach out beyond the data. And draw people in. And I said, I was chatting to you later this morning. And he said, Oh, yes, he said, I remember. And he pretty much told me, and I've just read the book. So I've just read the proper version of how you first had a bit of a kind of epiphany moment I call it in terms of this is what nursing is in the ICU unit with the young man. So tell me that story. Because obviously, that had stayed with Jamie from years ago. And that's proving what you've just said that people remember the stories and they therefore remember you and your message.

Joan Pons Laplana:

And for me, that was a very powerful moment, obviously, I never, when I was growing up, like a lot of youngsters, I didn't know what I wanted to do. I know what I wanted to be somehow health related. Then I became a nurse. And then I was a bit young, and I used to love gadgets. And but my focus, I went into A&E, and then I went to intensive care, when I came to England, my focus was more on the gadgets and it for me was fascinating, you know, and I'm playing with them to see if I can make it better. The patient laying in the bed was, was there, but I didn't pay more attention. Until I discovered a very powerful moment with that patient who was in a cubicle. And he asked me to, to see if he could see through the window. And when somebody gave me a challenge. I'm not the kind of person who normally goes away and says, No, I cannot do it, I always look to see if there is any way I can do it. And that goes in my mind. And then that challenge, that vision that he was connected to a lot of tubes and drains and everything they gave me because he wanted to experience to see outside, because he had been in intensive care for quite a few months. And he was depressed and he was not going anywhere. And then I did it, it took me nearly three hours to move out the equipment and everything. But I did in secret, I closed all the doors, I closed all the windows and everything because I didn't want to ask anybody because I knew the answer was going to be no, because I was gonna break a lot of health and safety rules. But I thought ... I always say, Well, if that's the right thing for the patient, let's do it. If you break health and safety rules, if I can justify it, I will do it, because that's the kind of thing that I will do. Because unless you break rules, you will never, you never go anywhere. History is full of people breaking rules. And now we have a lot of rights, woman rights, and, you know, and and all these other rights, that otherwise, we will still be in the Middle Ages. The moment that I put him in the window, I leave his bed, and he looked outside, I sat with him, that moment is, I still now have goosebumps, all my skin, I have goosebumps. That moment, I realise that the most powerful thing you can do is to make a difference to somebody and to and to, to realise that I did that, that with my effort and everything I have, I made somebody else happier, I transformed the life of that patient, but also that patient transformed my life. Because that patient that was on that unit, not going anywhere surely got better. And we didn't alter the treatment we did, the only thing that changed is that I put him in front of the window. And the doctor said, I don't know what happened, everything I say I know what happened, I put him but I couldn't tell it because obviously I did it in secret. And then then when I say what I did, and I was called by the matron, I the matron, told me , "Joan, you know, you cannot do that. That's not safe and everything". But I say, I gave that patient something that was missing. I give that patient hope. And that hope is more powerful that any medicine, that patient visualised himself outside and that moment decided that he wanted to be outside and in less than a week, he went from intensive care to HDU and then to the to the ward, I never see the patient again. But also what that patient did is transformed my life because I discovered what I wanted to do for the rest of my life, I wanted to try to have the same feeling that feeling that if you can make a difference to somebody, it is the most powerful thing in the world. Unfortunately, sometimes there's a lot of barriers to be able to do that. And like any organisation, NHS sometimes is quite strict. It's getting better and everything is because we have a lot of rebels now and and we try to take over but at that point it was 20 years ago. It was quite unheard of that somebody like me, try to break the rules and isobey the command chain from top to below. But the problem is, the matron asked me, "Joan, don't do it again". And I told her, I'm always very honest so sorry, I cannot guarantee that. But what do you mean? Because if that means the patient will get better, I will break any health and safety rules, any other protocols, if that means that is the best for the patient. So if you do that, Joan, I will discipline you. So be it.. And, a few years later, when I moved to A&E, my philosophy carried on, I have a strong belief that always patients should be first. I got sacked, because I disobeyed some of my managers. But I will do it again and again and again. I'd rather get in trouble for doing the best for my patient than not following protocols and rules that are not in the best interests of people.

Gill Phillips:

So that literally gave me goosebumps as you were describing how hope, that word hope. And we all need hope in our lives don't we - without that there is nothing. And the other thing that is obvious, really, when I think about it, but you just made me think about it, as you were telling that story is our mutual friends. So 'Jenny the M', she climbed the ladder, to write 'skin to skin' across the theatre wall because people weren't listening, and she knew she was gonna get into shedloads of trouble. And she did. But we need, like you say, we need those rebels. We need people with courage. And that's the word ..., who are prepared to... you're shaking, I think in some of these situations, because you know, you're going to get into trouble. But with the vision of the patient, in Jenny's case, the mum the importance of skin to skin in that first hour, it mattered so much to her. And clearly equally, you know, to you and other rebels within this group. And I guess the other thing I was thinking is what a sense of community we've all got from linking up with each other, sharing these stories, and getting that kind of friendship and community ... and bit more courage.

Joan Pons Laplana:

Yeah, that helped me a lot. That's why I love social media. Because Initially, I felt very isolated when I got sacked and everything, that was before social media started. And what I discovered in social media is that I was not alone, the day I discovered that there were more rebels in the system. And I discovered that through Helen Bevan and the NHS change day when I went to London, and I joined the first NHS Change Day, I did cry, because I found my tribe, I found the people where I belong with the rebels. And then I started connections. And suddenly, I started learning a lot and how to survive in this environment. Because alone, it's very difficult. But together, we are more powerful. And that also gave me more opportunity. And that's when also I managed to gain a lot of success with my ideas or my projects and everything, I've managed to break a lot of boundaries, because I learn from other rebels how to how to survive. And that's also my legacy that I've done in this book, I'm trying to help other people who come to want to be rebels. I'm called to survive in the system. The first thing they want to do if you're a rebel is to shoot you down.

Gill Phillips:

Yeah, yeah, that's a powerful thing to say is that the first thing they want to do, to use a rebel is shoot you down. And I think from my experience, also in terms of how I came to set up Whose Shoes, there's something around human nature, that's not very nice, sometimes in terms of you see people either rising above their station, or moving outside the box that you kind of define them by, then there can be a tendency not to be supportive. And I see a lot of people who, you know, I guess like yourself, like, Jenny, like many others, and probably myself really, that you kind of end up getting influential on a national stage, and people are really learning and, you know, supporting you in terms of what you're doing, and you're encouraging them to be more bold, and so on. But sometimes that doesn't fit with your actual place of work or ... that might be a difficult thing to talk about. You don't then have to talk about that. But that's just a reflection on my

Joan Pons Laplana:

Yes, it's difficult. Because to be a rebel part. also, you need a manager who allows you, you need the space, you need also the support, and that's quite difficult. And that is changing now. I discovered that to be a rebel also you need to have a space, a safe space where you can try. And that's I think it changing and Leadership Academy, the NHS have done a lot of work to create leaders who allow this creativity, the best thing that you can allow your staff is to be creative, because I always say, if you have a problem, the best person who you need to ask is the patient and the staff because they live with that problem. And I'm sure that a lot of them, they have already the solution. We just need to create the space to try to have the solution and a lot of managers, middle managers. The problem in our managers is ... they are like a sandwich, they have pressures from above, because they have targets and they have pressures from below, because they need to deliver. And they have the staff. And the key thing, when you have a lot Yeah, that's been such an incredible network and as are of pressures, you go to a safe mode and safe mode is not to take risks. And that's the worst thing you can do.The best thing you can do is to allow and trust your staff, to, you know, to do the job, and not micromanage and create that space, that we can challenge the system and try to find solutions. And that for me, is very, very important. Middle management, I think is the key for the NHS. And there's a lot of variety, the pain is a lot of trusts that you go to, they shoot you down, other trusts are quite good. And yes, I have hadvthe luck, the ability that I've been able to move, and I've been to some very good thrusts, and other ones not so good. But I think we get in there. But some trusts are very risk adverse. Because obviously we are playing with people's health and everything. And I always remember when I went to one of my projects, and the chief executive didn't want me to do this project. And he said, Oh, well, how can we go if you go wrong? And I say, Well, what happens If it goes right, say, okay, what's the chances of it going right? Say, but I don't know. But can we carry on doing nothing? And they say, Oh, no, that's true, Joan, but what do you propose, I mean, at least, if we do something, even if it is outside the box, we have the chance to succeed. But that makes chief executive and the management very nervous, because with everything that you try there's the possibility of failure, but we need for this, we need to break that stigma about failure. You cannot succeed without failing, it is impossible. Nobody anywhere in the world have succeeded without failing and failing and failing again. But by failing, we need to learn and do and then carry on and do it better. That's the only way is you learn that from from walking from childhood, the only way you can learn to walk is falling, falling the same riding a bicycle, unless you fall a lot of times, then then you don't ride the bike. And here in the NHS, pretending that we don't need to learn anything, we just got to find a solution automatically. It's impossible. You need to try and try again. And then you modify things. And then you'll get the resolution. That's why I love Qi systems and all quality improvement that I learned with Helen Bevan and Jackie Lyton - they had a big influence on me. the whole school for healthcare change agents and so on. It's very special. yeah, Yeah, that's well, no, I do. I was one of the first I was on the first cohort of the school for rebels at that point was they were calling the name change agents are a bit more, you know, people are more able to go to your manager and say, I want to be a rebel, they'd say you know, but if I want to be a change agent, it's a bit more you have a licence to change, that's a bit more commercial and better, but the spirit is still the same, it is to show and to teach rebels. How to make it better, to survive in an environment, that they're not ready for you to be a rebel.

Gill Phillips:

And the whole What is it? 'Do it first and seek forgiveness'? Well, yeah, , it's a philosophy, isn't it? It's good fun.

Joan Pons Laplana:

I do it and then yeah, as I say, by the time normally by the time that you ypou.ve done something ... but I learned that jobs need to get results,data. I used to hate maths at school but now maths are my best friends and I always gather the results and evidence because I know what I'm going to get in trouble when I do some changes. But if I come back and say, hey, look, yeah, I changed that but have a look at, you know, we have reduced the level of infections by 2%. Then the manager says, okay, carry on, Joan, carry on, you know, but normally, because I was very frustrated and because every time I wanted to do something different, I needed to go through a chain of command and meetings and meetings I'm at a time that sometimes by the time that they come back to me "You can do it" we are six months down the line. And I said well, that's too late I want to do it now and then I realised Oh, let's do it. I'll do it. And then when they call me because they realised that I was doing something I said, Yeah, I'm doing that. But I learned to believe in myself, did they have a look at the statistics, you know, we managed to see more patients because we have reduced these these and these and that also have saved me a lot of problems.

Gill Phillips:

I think that's clever. I mean, I think sort of doing things within the system. So you realise what's important to the system. Yeah. And how to make the changes that you're making more palatable, more acceptable, and just give yourself that bit more licence. I guess.

Joan Pons Laplana:

You need to learn the language. It's not the same talking to a manager as talking to somebody on the front line. Like the manager has more focus on make making sure the levels and infections are down, making sure that length of stays are also as short and improved things; the front line, they want to make a difference. And that means that always flexible in my projects, when I talk to a manager, I talked to them in a language same when I talk to nurses, or I talk to doctors, they have a different language. And learning the language for me is quite powerful. It's called Learning English or Spanish, every tribe they have their own language, and you need to learn what motivates them to be able to engage with them, because you need all of us to engage on that project. Because you cannot do the project alone, that's also what I learned very quickly the language to be able to the people who are on the fence and say, Oh, I don't know what Joe is doing, to bring them with you And then when they're with you it's very powerful.

Gill Phillips:

And I guess that's where, you know, from my point of view, the Whose Shoes approach comes in, in terms of looking at things from different perspectives. And you know, people think, Whose Shoes is about putting yourself in the shoes of the person or the patient. And of course it is. But it's not just that, because it's understanding what it's like to be the frontline staff. And we need people who like yourself, you know, are fired up to want to be part of that profession, to want to stay in the profession to have the freedom to actually, you know, you want people to get out of bed in the morning and kind of be wanting to come to work to pick up and, you know, to build on what they're doing and to make a difference to people. And similarly, you've got to live in the real world of, the data and the infection control, and the statistics, and so on. And when you can actually bring all those different perspectives together, that's when through co production, you find the solutions that actually work.

Joan Pons Laplana:

Yeah, that's what I found in my 20 years of nursing that the only way you can guarantee an increase in succeeding exponentially is by coproduction. and unless you coproduce with everybody, then your chances of fail8ng are quite high. And I always remember that data, that Helen always told me. Every time you do a quality improvement project, you have 70% chances is to fail but with coproduction I think, we aew in the 30% chance to succeed. And that.s why it's important. And I always say you need to involve patients and front-line and sometimes a lot of managers doing qualty improvement, they forget who is going to deliver and implement these projects and they think they have the solution but sometimes you believe tgat you have the solution but your patients and you staff tell you otherwise. You need to trust them because I always believe that they know better. I learned that when I was a community nurse. One day, I was teaching a woman about diabetes and I stopped and said hang on a minute, how long have you been a diabetic? And she said "I've been a diabetic 45 years Joan" and I said, who am I to teach you about diabetes, you probably can tell me everything about diabetes. The problem that you have is not that you don't know about diabetes, it's, something else that meams that this is not well controlled. And when I started this conversation, she told me the reasons why she was missing some insulins,and then we created a plan together how to improve and wow, that lady didn't have any more hypers or hypos and it was because I had empowered that lady to do what she wanted to do and my advice to make it safe. And that's the role I think that a nurse needs to do. We don't need to tell people what to do, we need to empower them to make the right decision.

Gill Phillips:

Well, I think that's great. We said we'd try and keep to about 30 minutes. I know we could talk all day Joan and to kind of bring the podcast almost full circle in that at the beginning , literally at the beginning you were talking about turning the NHS upside down and letting the patients and the frontline staff lead. And I think probably that's the key lemon lightbulb, the key message from this session, would you say?

Joan Pons Laplana:

Yeah , I think that trust your patient, trust your staff and have conversations, engage with people, learn about other people, be curious. Curiosity is one of the best drivers. And sometimes when we became adults, we try to kill curiosity. No be curious. If you have one quality, explore, be curious, and learn. Never stop learning. Because life is, for me, It's been exciting when you learn new things.

Gill Phillips:

Brilliant. Thank you so Joan. That's been just so lovely to talk to you. And especially so soon after following you so closely on the London Marathon. Congratulations and no doubt you've got plenty more projects, which you may not even know what they are yet because I know you take each minute as it comes, which is fantastic.

Joan Pons Laplana:

Thank you very much Gill .

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6. Joan Pons Laplana - creative disruption - Wild Card - Whose Shoes?

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Today we are walking - or should I say running - in the shoes of Joan Pons Laplana. Joan is one of the most interesting JFDI people I know. We all want to support the NHS, but Joan adds fun and creativity, so that we can all feel part of his adve...

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#NoHierarchyJustPeople - should fab NHS people need to feel brave to speak out? Sadly they often do ...

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#NoHierarchyJustPeople - should fab NHS people need to feel brave to speak out? Sadly they often do ...

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Walking in the shoes of a creative, innovative nurse!

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Gill Phillips 00:00

My name is Gill Phillips and I'm the creator of Whose Shoes, a popular approach to co-production. I was named as an #HSJ100 Wild Card, and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

Gill Phillips 00:46

So today I have the huge pleasure of talking to Dr. Terri Porrett, otherwise known as t'he blonde.' I'm sure Teri will tell us more about that as we go. A specialist nurse, and Head of Education for the Ostomy division at Coloplast Terri has huge experience. And today we'll be talking about her fabulous work at Fab NHS Stuff. Never one to take no for an answer. I'm told that grit and determination are your middle names Terri and possibly even belligerent.

Terri Porrett 01:17

Absolutely.

Gill Phillips 01:18

All in all, a perfect Wild Card. So thank you for joining us, Terri, welcome. And can you tell us a bit more about yourself and what's important to you?

Terri Porrett 01:27

Well, thank you, Gill. And it's such a pleasure to be here.. So, as Gill said, my name's Terri Porrett. I am a nurse. And I was one of these young people that growing up at the age of five announced to everybody that I was going to be a nurse, I had no idea actually what nursing was about other than what you see on the tele and cartoons of nurses and things. But actually, I've never, ever regretted that decision to go to nursing school, I was meant to be a nurse, I, you know, I feel that's why I'm here. That doesn't mean I'm the best nurse in the whole world. But it means that this is what I think I was put here to do. I think we all make a difference in our own ways. And I was meant to be a nurse. I started by training at the London Hospital in Whitechapel. And I have to say, on the first day in nursing school, when a rather scary matron was talking to us about what nursing entails. And she was talking about night duty. And I sat there and suddenly thought, really, you have to do nights, which shows you how much I had considered what the role would entail. But I loved every minute of my training. And actually, as a student nurse, one of the very early wards that I worked on was a colorectal ward. And I saw people who were having surgery for their bowel cancer, and they were having a stoma, and then they were leaving hospital, and there was nothing. And there was no support for them. The ward sister ran a clinic on the ward. And if they had a problem, they'd come up and she had like a little broom cupboard with bits and pieces in it. And I thought, oh my word, we must be able to do this better when I qualify, I want to do this. And when I qualified, I worked on a variety of colorectal gastrointestinal wards. I even worked in the operating theatres, the colorectal theatres, because I thought, if I'm going to support people having that, I need to actually understand the operations. So I did all of that as a staff nurse. And my aim was to be a ward sister at St. Mark's hospital, I hadn't really thought past being a ward sister, because that was the pinnacle of the kind of nursing career in my eyes at that stage. And so Mark's hospital was the specialist hospital for for the country for complex bowel problems. And I became sister Allingham at St. Mark's hospital. And for the first year or so I thought, yeah, this is this. I loved every minute of it. I loved being a ward sister, the team kind of working, the planning, getting to know your staff and changing the provision of services to patients. And then the more I understood about stoma care, the more I understood that actually everything that we do in hospital is gret. But a person who's 18 and is going to really live the rest of their life with a stoma spends 1% of their life with a stoma in hospital, the other 99% is in the community. And how do we actually ensure that people can live the life they want to lead with with a stoma and they're not defined by the stoma, but the stoma allows them to do what they want to do. So I put in a proposal to the nurse director at St. Mark saying I think we should have a second stoma care nurse here because actually, when she goes on holiday, we all kind of try and cover as ward sisters. But there's only one of her and this is really, really important. And she came up to see me and she said that's a really good idea. Would you like to do that? Because it was then the NEMB216 course. It was nine weeks. Would you like to do it? And as the ward sister would you like to cover and come out of the ward for the periods of annual leave or sickness and cover this service? And I said yeah, of course. Well, that was my first introduction to actually not being popular because I saw that there was an issue. I put it in writing. But I was the newest ward sister at St. Mark's. The ward sisters had been there for many, many years. And they'd talked and identified and as we do as nurses complained a bit Oh isn't it but we have to cover this because there aren't, but nobody had actually put it in writing. So look, I think this is an issue, I think we could do a better service for our patients. And then, of course, I was given the opportunities, which didn't make me that popular. But hey, that's life. So that was my first real kind of thinking that actually, as nurses, we can whinge quite a lot. And we can complain. We're human beings, we're tired, we get, you know, stressed by the situation. But if we're not prepared to suggest how we could make things better than just stop whinging, so either stop whingeing or make a suggestion of how we can improve this because there's always a way that we can do something differently. And that really has shaped the rest of my career. So I did this EMB 216 and became a stoma care nurse and was a ward sister and covered the service when the stoma care nurse was away. Absolutely loved it. At the time, the Homerton hospital was part of a foundation trust with St. Mark's and Bart's hospital, and they advertised for a nurse, clinical nurse specialists in stoma care to set up a service at the Homerton. So I said to my boss at St Mark's,, I'd really like to go and do that. And it will give me the opportunity to do the community side of things and she said No, go,, go and do that. So I applied I got the job, I went to the Homerton . And I said to her, two years now I'll be back, I said to my senior, you know, I will come back with this and, and 20 years later, I was still at the Homerton, because I had had the opportunity to change how services were delivered for patients by listening to patients by involving patients, and by being able to grow the service. So when I started the Homerton team, it was me, a stoma care nurse. And when I left 20 years later, we had the bowel cancer screening practitioners, I had the continence nurse specialists because obviously pelvic floor incontinence issues are across the board. I had an inflammatory bowel disease nurse, I had a research fellow had colorectal cancer centres, all grown because I could make a case to to the Trust board about why people with conditions that are often identified as being socially isolating, there's a huge amount of stigma associated with poo. I think it's the one of the last big taboos, we don't like to talk about it. And so 20 years later, I will still there. I have to say the Homerton was a fabulous place to work, a district general hospital hugely varied multicultural society, so many different languages, cultures, beliefs to incorporate into our care, I loved every single minute of it, and being challenged to go okay, well, we're delivering this service, and it's fantastic. But actually all the advice I give around diet and how to control our either faecal output if you have incontinence, or if you have a stoma, and I don't understand what a Turkish, or Kurdish diet is, I can't suggest the right vegetables I don't understand. So although I can do it for if you like within my culture, and my dietary kind of base, I can't do this for somebody else. But then being able to ring the Imam and have an hour with the Imam and the health advocates who then actually allowed us, took us shopping showed me vegetables that I'd seen, but I didn't even know their names, explained whether they were high or low in fibre. So I think we can make such a difference. If we're just prepared to go, this isn't perfect. But in these simple steps, I can begin to make it better. So I do think we have to have the courage of our convictions, which I think is where the grit and determination bit that you were talking about me comes in. Because if you have an idea, and somebody says no, I always believed that, that doesn't mean NEVER, it means I just haven't explained it well enough for that person to understand why. So it's my responsibility to position it differently. And within my team, we had two sayings in my team at the Homerton . So the first thing is we don't do failure. We might have limited degrees of success, but we don't do failure. Because failure is just going oh, that didn't work and forgetting about it, not learning from it and doing it differently. So we don't do failure. And actually we can always turn adversity to advantage. So that's that kind of was my yeah defines me as a nurse, I think just thinking you don't have to do a multi- centre international randomised control trial to make a difference. There are small things that you can do and test and incrementally you can, you can have as big an impact.

Gill Phillips 10:58

Thanks Terri I think it's really fascinating. And it makes so much sense in terms of what I know about you. It's so interesting to hear people's personal stories and what's led them to what people see of you today. And just as you're talking, I mean, inevitably, various sort of things are resonating with me a couple of them personal actually. So I remember the #MatExp workshop that we did at Homerton with very warm feelings, I remember the chief exec coming in towards the end, and there wasn't a seat for her. And she stood up.

Terri Porrett 11:31

Was that Nancy?

Gill Phillips 11:32

No, it was... is it Tracy?

Terri Porrett 11:35

Yes, yeah, yeah.

Gill Phillips 11:38

And I think Joan was head of Midwifery, and it sort of bringing back memories, but I've just remembered this long, narrow room, it wasn't an ideal room, there was a little girl helping Anna with the pens, the conversations were just absolutely buzzing, and I think the exec team meeting or something, had finished during our workshop, and they'd all come in to see what was happening. And I think they look quite shocked, actually, that there were so many people and you know, you couldn't just come in and see it, you had to just join in with what was happening. So that was Homerton. And that was, I can see that that was a special, very multicultural, all the things that you've said, and I've just had that picture. And the other one, which is a crazy sort of memory that I had forgotten, I even remembered as in my early career, I did a Diploma in Management Studies. And part of it involved me going around the shops, Asian shops in Leicester, learning about the different vegetables, and long, thin things, and all sorts of things. And just all of what you've just said around diet and culture, and I just found it fascinating and so much fun to learn, things that I just hadn't got a clue about. And I think, you know, people need to be more open than they to learning about different cultures. And it's so interesting. And in terms of nursing, and what you do to actually understand people's cultures is just critical isn't it?

Terri Porrett 13:04

A bsolutely , you can't deliver individual person centred care if you don't understand how that person lives, their beliefs, their diet, their family, as situations, you know, patriarchal matriarchal kind of societies, you have to understand that, and I suppose it's difficult, we all we understand our personal culture, because that's how we've been brought up. So you, we haven't had to learn it. But actually, you have to physically make that decision to be as comfortable with other people's culture or beliefs as as your own. Because otherwise you can't deliver the same care that you would to somebody from from your background. And I think the the way I've always tried to do that, obviously, I used to talk to my mom and dad and shock them terribly as a student nurse, right? And explain over dinner, all of things I was doing and injecting and all this kind of thing. And my dad said to me, so how, you know, if you get asked to do something, when when you're a student, or so you don't really know how to do it or if you are a staff nurse, how do you deal with that? And I remember saying to him dad, all I can do is say to the person, actually, I am not the person to do this, I you know, I haven't got this. If it's not good enough for my mom or dad or my brother, then I can't do it. I will always try my correct thing. What I'm about to do, or the service I'm about to offer, is this good enough for a member of my family? And if the answer is no, then I need to do something to change that, that service or to change my skill level in being able to deliver. So that's always been my guide and I can remember him saying to me, that must be quite tiring having to think like that the whole time. And I went well, Nursing is a safety critical profession. And so you have to think like that.

Gill Phillips 15:05

But it's so simple, isn't it? You know, that shouldn't be difficult to think because, you know, would it be good enough for my mom and I loved the way that sort of caught on in health care. I remember Andrea Sutcliffe and her 'the mum test'. A bit like 'Hello, my name is' it's just so simple, but makes such a difference to people. And one or two of the other things she was saying there, Terri? So I've just been talking, as I think I mentioned to you, to Racha el Grimaldi from cardmedic. And you know, we were talking about cultural issues and also mentioned Sunita from Chelsea and Westminster hospital, who's doing personalised discharge letters now for people. Now those would be the sorts of things wouldn't they in turn have, you know, if you were talking about diet, what you could realistically eat, rather than just a standard letter? It's not rocket science, is it?

Terri Porrett 15:54

No. But let's be fair, the situation that most health and care practitioners health and social care have gone through in the last 18 months, the emotional trauma stresses of them living and working through the pandemic, I cannot be kind of over over realised the impact, the draining impact, people are exhausted. So, I think more and more it becomes people who are not at the forefront, if you like of frontline care delivery, to step up and go, How can I help you do this, you you have using your mental capacity and energy to deliver services? How can I help you do the bits around the edges that you can't do. And I think that's what I'm endeavouring to do in my day job with Coloplast. So deliver educational tools and resources to support specialist nurses. Were also with the Academy of FAB Stuff, which you alluded to at the beginning, which is a platform where people can share solutions to common problems. And it's based on the theory of positive deviance. So in health and social care, the majority of the problems that we all experience are the same, there might be slight local variations or nuances. But actually, some of the challenges it's affecting the whole of the NHS in England, Scotland, Northern Ireland and Wales. So rather than this, ' if it wasn't invented here' mentality of having to research and pilot and what, let's hear from people who've had that problem, what their solution was, and instead of starting with a blank piece of paper, start with their solution, and then tweak it to work and test out within your environment. Just don't start with a blank piece of paper, because that's the difficult thing. So I think, yeah, it's really important to share. So this became really apparent to me when I was at the Homerton . So when we were developing this, this team of specialists, nurses, I actually wrote this paper to the chief executive at the time and said, Look, if you are unfortunate enough to have bowel cancer diagnosed and you need to have a stoma, you get stuck with a stoma care nurse specialist who sees you the whole way through your journey of life with cancer, your cancer treatment pathway, because you have a stoma, you've got that person to ring up, you've got the advice, you've got somebody to, to kind of broker your care, dovetail your repeat scans with other appointments, you've got a specialist nurse, if you're unfortunate enough to have bowel cancer diagnosed, have surgery and are fortunate enough to have your bowel sewn back together again, in then it's : Bye! note, there were no colorectal cancer nurse specialists. So you just and I wrote and said look, we talked about equity of access to services. This can't be right, this this can't be right. And we need to develop a colorectal cancer nurse role. And then everybody should have the same follow up following their surgery as they go through their really often quite extensive chemo radiation, radiation treatment, they they need that support. We can do nurse led clinics, we can do their follow ups. And the answer came back yet come come and talk to us in the board. Tell us a little bit more about this because this is you. So I went and I spoke and I explained why why I thought this could be a nurse led service complementing and working with our medical colleagues, but this could be nurse led. And the following day, got a letter in writing saying, right, do it you need to we'll agree you the funding for another stoma care nurse because you will step away from stoma care and you're going to develop this role.

Terri Porrett 20:09

And I thought well, okay, that's great. And then I looked around and there were very, very few because the it wasn't, you know, the norm then so I actually went to the US and had a placement at the Cleveland Clinic in Fort Lauderdale. From there, came back wrote it wrote all the protocols, you know, about nurses doing things like a sigmoidoscopy and oh, you're doing technical tasks. No, I'm examining this. I'm going to examine the person and then plan their care from that. It's a tool. It's not a kind of a big deal that a nurse is doing something that a doctor normally did, it's how I use that skill to change the service that the patient's going to be offered. And we put our put everything together in a in a kind of like a book. So all the guidelines, all the training protocols, because there weren't any nationally, and the Royal College of Nursing and the Association of ColoProctology kind of used it as an exemplar, and nurses used to contact me. So we're going to be colorectal nurses. If you've got anything you can share. Yeah, I've got a whole what everything? Yeah, look, I was fortunate I was supported to do this for a year, you're in post now. So let's not don't spend hours writing these policies, adapt them. I used to just send them, just share with everybody. Because why go? Yeah, we've got them, but they're ours. So you've got to write your own. Why, why would you do that?

Gill Phillips 21:39

And it's so helpful. I mean, do you think that culture, obviously, fab NHS stuff has played a massive part of this, and I know the podcast I did with Carol Munt, we were kind of tearing our hair out a bit that people don't share more, and then an obvious and very natural shout out for Fab NHS stuff. But do you think the norm is now that people will look not to a blank piece of paper, but to look around and see what's already out there and to share with each other?

Terri Porrett 22:07

I think it's getting better. Yes. I still think that there is a degree of Oh, that was done. At St. Elsewhere. And here, it's and whatever, we're much, but so we'll see, we'll do our own, you know,. So I do think there is that there is still that, but it's much less. And that leads me to so to how FAB happened. So okay, I had through through my role at Coloplast, I started working with Professor Alison Leary, she wasn't Prof then. And we wanted to develop a resource for specialist nurses to help them demonstrate their value, because I'd got quite far with how to write a business plan and how to write an annual report. Because I'd asked my brother who was in business, how to do this. So at the Homerton , when I wanted to grow, grow my service, grow my team, I had to use the language of business. That's, you know, I had to be bilingual. You know, when I want to talk to doctors, if I want to change their practice, I need my paper published in a medical journal, because I want to change their practice. I have to do a randomised control trial, because they'll listened to that. I'll learn the language necessary, so that the people who I want to listen to me who I want to not say, No, I've got to present it to them in a way that they can easily say, Yes, I think that's my job. Rather than say, why don't they understand why? Because you're not explaining well enough, you, you need to tell people what you do. So especially as nurses, we go on these courses, and I'm a clinical expert. Nobody teaches me how to write a job plan. Nobody teaches me how to write an annual report or a business case or do a service summary. Nobody helps me with the language that I use, because in nursing, we have such passive language at times, because our language of how we describe what we do, by the nature of nursing arose from religious orders, you know, so we have, I j'ust' did this. Or I 'only' ... 'basic' nursing care, there's nothing basic about it it's the foundations on which all other care is built. So our language is dreadful, but we don't we don't help us to develop in that way. So Alison Leary and I've worked together to build this standalone website, we worked in conjunction with Ulster University. And so it's a website called the Apollo nursing resource. And any any nurse from any speciality can go on to it, learn how to do a job plan, learn how to do an annual report, how to analyse activity within this service, and it's free for for anybody.

Terri Porrett 25:03

It just so happened that Roy Lilley, the health writer and commentator saw on Twitter, I must have tweeted about this Apollo nursing resource and he went and had a look at it. And he obviously thought, Oh, this is really good. And he wrote about it in part of an e- letter that he wrote. And on the day that he wrote about it, he nearly broke the website because so many people went to it to have a look, which obviously was fantastic. Fantastic. Yeah. And then he tweeted, he direct messaged me on Twitter and said, Look, I have seen your Apollo website you and Alison I think it's fantastic. I've got an idea. I'd like to do some things similar but for the healthcare in general. So, would you come and have a chat with me about it? So we met. And I have to say I was a little scared, because you know, he has quite a personality through his letter, I'd never met him before. And within 15 minutes, we were killing ourselves laughing, actually, because he has a fantastic sense of humour. But he was so so focused on l- ook in health care, lots of problems happen in lots of places, but there's no central place, no repository, where people can go to learn from the problems other people have had and how they can solve them. Do you think you could help me make this happen? And I thought, well, that sounds like a really good idea. And so yeah, definitely. So worthwhile. He said, What shall we call it? The academy? Yeah, the Academy of fabulous stuff. Because my whole premise was, as I talked to you back at the beginning was I didn't want this to appear too .... And I don't mean academic, I didn't want the label or the name of the website to put people off thinking that actually they had something to contribute to this website. I wanted it to be for everybody, not only for audit leads or research leads or QI facilitators, I wanted everybody to feel that this was a place they could go, have a look and browse for solutions, but to also share their work. So we've had work shared by porters, who've shared ... I've emailed them and said, Okay, this is great. I love these three bullet points, I think you're talking about a, b, and c, and I've scoped it out and work because they've never, they've never published anything before. It's my job to make. It So what message do you need to get across to people of what you did, I'll help you make, make that so. So we have from realistically all, all walks of health and social care, employment, volunteers, visitors, service users all contribute to the Academy of FAB stuff. And it's got over 5000 shares. So 5000 pieces of work where people have had an issue, and they found a solution. And it can be a small thing, like one of the one of the most impactful things was a community nursing hospital where a ward sister, a community nursing hospital, found that on the patient feedback, noise at night was a big thing. And people couldn't sleep. And so she didn't fill in a, you know, loads of forms. She just said, You know what I've been given, I've got this money I'm going to and she researched it, I'm going to buy all of the slow closing bins. And she replaced all of the all of the bins on the ward with these slow closing ones that don't make a noise so you can let it go. And it doesn't go clanging at two o'clock in the morning. And, and she made these sleep packs she bought, he can buy very cheaply, the kind of eye masks and the foam ear things that you get on an aeroplane. And for people that were light sleepers, she offered them these sleep packs. And the next patient survey came out and the complaints about not being able to sleep at night had gone from being like seven out of 10 respondents complained about noise at night to nobody complaining about noise.

Gill Phillips 29:31

That's amazing.

Terri Porrett 29:32

And she shared about the slow closing bins. We tweeted about it. She was inundated. It's one of the most successful... it's a tiny thing.

Gill Phillips 29:31

That everyone can relate to.

Terri Porrett 29:32

But many people... Oh, really it was a bin - it's not like it was... you know, you haven't cured cancer. No. But for every single patient on that Ward, that is a big deal. And if you put all of these little things together, it really changes the person's experience of living with their with their illness, because people have often said to me, okay, Terri, you're a nurse, you did your masters, you did your PhD. Don't you wish she'd been a doctor? No, I, I've always wanted I wanted to be a nurse. I'm meant to be a nurse. You know, cure things? Well, very few things can we cure. We can treat things, but my nursing interventions can treat things and make things better. And once we're so hung up on trying to cure things, we're missing the point for the 95% of people that are having to live with diabetes, live with chronic obstructive ailments, live with renal failure. can't cure it. How can I make it the best possible and that's what I can do as a nurse. And it's these little things that really make that. So, so important, I think, because that improves quality of life.

Gill Phillips 30:56

And I think that that's just so amazing. That like last minute or so needs to be captured on its own in terms of, you know, why would you be a nurse rather than a doctor, it's been so like, eye opening for me in a way, you know, just to sort of hear that, and then 99% of your life, that you're just living your life with whatever condition you've got, doing the best you can do. The other thing that's been a massive kind of light bulb for me is, you know, as a small business with Whose Shoes, we find it difficult to capture and follow up all the different outcomes. And we're doing, Flo, and I are doing a report for the RCOG at the moment. And we need to include the outcomes, and we've got books of actual case studies from our bigger projects. And I need to check they need to be on Fab NHS stuff, I think they are. But what we do at all of our workshops is encourage individuals to make pledges. And we should be saying, as a regular thing, you know, whatever you do, as a result of this, even if it's only a little little thing, and the way you describe the work with the porters, and so on, you know, Terri can help you if necessary, just capture that snippet. It doesn't need to be a massive project does it?

Terri Porrett 32:07

No Absolutely. Or you can be halfway through a change, and you've got stuck, and you don't know what to do next., We will tweet, we'll put you in touch with people that have been there so don't. So it's not even, it's even if you haven't finished, and you've got stuck, ask because there'll be somebody else who got stuck and has found a solution. So let's put you together,

Gill Phillips 32:31

We need to do a little mini project. Now I think just to point some of these amazing people, like say Sarah Jane Pedler. in Cornwall, they've done Whose Shoes workshops each year around big topics, all of them have collected pledges, all of them have collected outcomes. That's the sort of thing that should be fed through. They do just amazing work.

Terri Porrett 32:53

Absolutely Gill. And I can make you a campaign page, all of this can go in one central place. So all we need to do it. So when we want to refer people to this one page, one campaign page, and they will find everything with this hashtag on that one page, we can even sort it. It's so simple to do. So fab change day, this annual event started off six or seven years ago now maybe even longer. I think

Gill Phillips 33:23

I think I've been involved in all of them!

Terri Porrett 33:26

Where the NHS started off pledging how what can I do as an individual to change things, are still running.. And for the last two or three years fab has hosted this and been the repository for people to put either their pledges or their outcomes. This year. We're trying to make it really, really simple as you say. So you don't have to share, you don't have to type stuff in to the website. If you want to share a voice note, or you want to share a film on your telephone explaining what your problem was, and how you solved it within your ward or department and upload it. I'll put all the pretty bits around it and upload it to the website. So for fab change day, people can send voice memos, they can send films, not YouTube mega, NHS England stand, Comms standard films,

Gill Phillips 34:19

Just grab a phone and do it fun #JFDI

Terri Porrett 34:22

And I'll put the title and we'll embed it on the page. And on fab change day we will be tweeting every five minutes there will be a tweet to a new piece of work that people are sharing on new solutions.

Gill Phillips 34:36

That's extraordinary!

Terri Porrett 34:36

And to make it as easy as possible, we've made a template so if you do want to do a little poster, and you've never done one before, we've got the kind of what was your problem? What did you do about it? What were the challenging bits? What would you like to tell other people, we've made a really simple template but people can upload their own PowerPoint presentations, their own posters if they've done them already. So just trying to make it simple. You don't have to have 'leader' you don't have to have 'QI lead research, lead quality and development lead' on your badge. We all can do this. And if we share it then that just means that our little thing is amplified across the country as other people learn from it and it becomes a really really big thing. And as you know Gill, we've always said the little things are the big things.

Gill Phillips 35:25

Isn't that the 'L' in blonde? We never got back to blonde!

Terri Porrett 35:30

Blonde, big it up. Tell people about what you're doing. Your managers are not telepathic. Tell them what you and your service does. L: little things are the big things. Don't be put off thinking this isn't a randomised control trial or I haven't followed the Prince project methodology for planning it out doesn't matter. It doesn't matter. Little things make a big difference. Don't be embarrassed about and take any opportunity. That's the Oh in blonde to talk about what you do. You talking about your services you advocating for patients, as nurses, we love to say we're patients advocates. So talk up about the challenges for them. The areas of your service that you could improve, to improve things for patients. The N in blonde is never, ever, ever give up. Don't give up. No doesn't mean never. Find another way, find another way to communicate why it's important you do this.At the Homerton I asked for something. It took three annual reports, multiple multiple conversations before there was a lightbulb moment and they went you need these two people to ... Yes! and then I got them , three years. If I'd given up, that change for patients wouldn't have happened but never ever give up. So B L O N D determined we've already explained that. D on't give up and E: energise by sharing you will energise others you will energise your team who will be proud that you shared their work and you will energise your colleagues working throughout the NHS and social care who right now with what everybody has been through with the pandemic, they need your energy. So be blonde!

Gill Phillips 37:21

Be blonde! Yeah. And that 'energise' is so strong and when we get round to doing our pledges at the end of our workshops, I can't believe the way the room lights up as people share, that they actually realise that they individually can do something, they're not waiting for, like 'the top three things on your 'table and all this rubbish. It's like you are passionate about something. What can you do about it and people are owning it. It is brilliant. So Terri, let's put this episode out on Fab Change

Terri Porrett 37:50

Fab Change date. Yeah, November the 24th. Wow, that would be amazing. If you can!

Gill Phillips 37:54

That would be amazing. Let's do that on the day. And I think there's a lot of messages here that people can really take and run with. So, Terri, that has been amazing. Thank you so much.

Terri Porrett 38:04

Well, thank you. It's been a wonderful opportunity and nothing gives me more pleasure than talking about the amazing work that people do on the Academy of FAB stuff and their humility and pride in sharing so that others can benefit, so thank you for allowing me to share that

Gill Phillips 38:22

and your passion shines through. It really does. We need more blondes, let's all be blonde.

Terri Porrett 38:28

But don't forget it's a state of mind, not a hair colour.

Gill Phillips 38:32

I'll remember that!

Terri Porrett 38:33

OK, thanks Gill.

Gill Phillips 38:35

Thank you.

Gill Phillips 38:36

I hope you have enjoyed this episode. If so, please Subscribe now to hear more of these fascinating conversations on your favorite podcast platform. And please leave a review. I tweet as @WhoseShoes, thank you for being on this journey with me. And let's hope that together we can make a difference.

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12. Dr Terri Porrett - #FabNHSStuff - and so much more! - Wild Card - Whose Shoes?

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Today is #FabChange21 - the Fab Change 21 Festival - and how better to celebrate this than to chat with Dr Terri Porrett, otherwise known as 'The Blonde.' You can find out more about 'being blonde', and how it relates to quality improvement, dur...

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A Whose Shoes scenario re induction - information and real choice.

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Launch on matexp.org.uk. Flo is co-founder of the powerful #MatExp campaign with Gill Phillips, creator of Whose Shoes

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So here it is! I am so excited to support Florence Wilcock, a.k.a. #FabObs Flo to launch her innovative podcast: 'The Obs Pod'.

Ever since Flo first phoned me, back in 2014, asking 'if Whose Shoes would work in maternity services', I have been impressed by her person-centred approach, her ability to challenge the status quo and push boundaries and to work WITH women and families. She lives and breathes her powerful 'Wrong is wrong ...' mantra.

' The Obs Pod' will appeal to everyone who has an interest in maternity services. Everyone will be able to take something away from each episode, due to Flo's wide-ranging experience, gentle reflective style and ground-breaking practice.
Gill Phillips, Creator of Whose Shoes? and co-founder, with Flo, of the #MatExp social movement

As a young Mum who was totally blown away by the inspirational obstetricians who delivered my baby nearly two years ago, I am excited to start following 'The Obs Pod'. The first episode was fantastic; so interesting and captivating. I am sure the podcast will be hugely popular with pregnant women and maternity staff alike, along with so many other people who will find it fascinating to gain an insight into the thoughts and experiences of someone who shares the beauty and intimacy of pregnancy and birth as part of their working life.

Jenny Thirlwall, young Mum and member of #MatExp community,
West Midlands

******************************************************************

One of the things I have enjoyed the most over the last five years of #MatExp is the opportunity to get creative. From being 'just' an obstetrician, I have branched out and added: writer, poet, facilitator, film maker, speaker, campaigner to name just a few new skills.

Gill encouraged me to write a blog. I promised my husband it would be just the one, resulting in a nickname now from Gill 'One blog Flo'. as I have lost count now of how many I have actually written after dipping my toe in the water.

I've enjoyed making Steller stories after a quick demo on a train journey, particularly our #MatExpAdvent series and my Nobody's Patient monthly project reports. I have made videos, my contribution to our series for #MindNBody launch being one of my favourites, reading my poem 'Reassured'. All this is alongside my day job and I find these creative outlets re-energise me, develop me and feedback into my day to day working in maternity care.

In December, I was lucky enough to meet Natalie Silverman @FertilityPoddy at RCOG women's network meeting in Manchester. https://www.thefertilitypodcast.com/ She talked enthusiastically about podcasting. She made it sound both interesting and achievable. Something that wasn't too challenging but that might reach a different audience. She was inspiring and willing to offer advice. I went home enthused.

I spent the next couple of months thinking and exploring, I decided I have things I would like to share. Adam Kay's book 'This is going to hurt' has been a runaway success, but I want to voice a different perspective of the maternity world. One that would be accessible to women and staff alike. One that might ignite change and action as well as entertain. So, I have rolled up my sleeves, listened to a podcast series on making a podcast, taught myself the lingo, attempted the editing and technical bits and loved every minute.
So here goes, I am launching my next adventure:
The Obs Pod.
I hope you enjoy listening as much as I am enjoying making it!
Flo

Here are the episodes so far and new ones will automatically be added here. If you wish to access the programme notes Florence refers to each week, find the episode you are interested in on The Obs Pod (buzzsprout.com):

So here it is! I am so excited to support Florence Wilcock, a.k.a. #FabObs Flo to launch her innovative podcast: 'The Obs Pod'.

Ever since Flo first phoned me, back in 2014, asking 'if Whose Shoes would work in maternity services', I have been impressed by her person-centred approach, her ability to challenge the status quo and push boundaries and to work WITH women and families. She lives and breathes her powerful 'Wrong is wrong ...' mantra.

' The Obs Pod' will appeal to everyone who has an interest in maternity services. Everyone will be able to take something away from each episode, due to Flo's wide-ranging experience, gentle reflective style and ground-breaking practice.
Gill Phillips, Creator of Whose Shoes? and co-founder, with Flo, of the #MatExp social movement

As a young Mum who was totally blown away by the inspirational obstetricians who delivered my baby nearly two years ago, I am excited to start following 'The Obs Pod'. The first episode was fantastic; so interesting and captivating. I am sure the podcast will be hugely popular with pregnant women and maternity staff alike, along with so many other people who will find it fascinating to gain an insight into the thoughts and experiences of someone who shares the beauty and intimacy of pregnancy and birth as part of their working life.

Jenny Thirlwall, young Mum and member of #MatExp community,
West Midlands

******************************************************************

One of the things I have enjoyed the most over the last five years of #MatExp is the opportunity to get creative. From being 'just' an obstetrician, I have branched out and added: writer, poet, facilitator, film maker, speaker, campaigner to name just a few new skills.

Gill encouraged me to write a blog. I promised my husband it would be just the one, resulting in a nickname now from Gill 'One blog Flo'. as I have lost count now of how many I have actually written after dipping my toe in the water.

I've enjoyed making Steller stories after a quick demo on a train journey, particularly our #MatExpAdvent series and my Nobody's Patient monthly project reports. I have made videos, my contribution to our series for #MindNBody launch being one of my favourites, reading my poem 'Reassured'. All this is alongside my day job and I find these creative outlets re-energise me, develop me and feedback into my day to day working in maternity care.

In December, I was lucky enough to meet Natalie Silverman @FertilityPoddy at RCOG women's network meeting in Manchester. https://www.thefertilitypodcast.com/ She talked enthusiastically about podcasting. She made it sound both interesting and achievable. Something that wasn't too challenging but that might reach a different audience. She was inspiring and willing to offer advice. I went home enthused.

I spent the next couple of months thinking and exploring, I decided I have things I would like to share. Adam Kay's book 'This is going to hurt' has been a runaway success, but I want to voice a different perspective of the maternity world. One that would be accessible to women and staff alike. One that might ignite change and action as well as entertain. So, I have rolled up my sleeves, listened to a podcast series on making a podcast, taught myself the lingo, attempted the editing and technical bits and loved every minute.
So here goes, I am launching my next adventure:
The Obs Pod.
I hope you enjoy listening as much as I am enjoying making it!
Flo

Here are the episodes so far and new ones will automatically be added here. If you wish to access the programme notes Florence refers to each week, find the episode you are interested in on The Obs Pod (buzzsprout.com):

Twitter - Join the@MatExpBazaar!

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What Is #MatExp?

#MatExp is a powerful social campaign involving people from all walks of life from all across the country. There is no hierarchy, just people wanting to help improve maternity experience.

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So here it is! I am so excited to support Florence Wilcock, a.k.a. #FabObs Flo to launch her innovative podcast: 'The Obs Pod'. Ever since Flo first phoned me, back in 2014, asking 'if Whose Shoes would work in maternity services', I have been impressed by her person-centred approach, her ability to challenge the status quo and push boundaries and to work WITH women and families.

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The Obs Pod - Episode 58 - Merry Go Round

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The Obs Pod - Episode 58 - Merry Go Round

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Change - NHS style

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Sometimes in the NHS it can feel like we are going round and round in circles when we are trying to make a change. Here I talk about some of my experiences and why staff can find it so difficult to embrace new ideas when they feel they have see i...

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Gill Phillips, @WhoseShoes, reflects on ‘Merry Go Round’

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Gill Phillips, @WhoseShoes, reflects on ‘Merry Go Round’

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Agree! Let's not reinvent the wheel! Gill's thoughts on the Obs Pod Episode 58 - making positive change

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I am a big fan of the Obs Pod. It is such a wonderfully simple and yet creative idea. Florence Wilcock, a highly experienced consultant obstetrician, muses and reflects each week on different aspects of maternity care. I don't think anyone has done this before ... and certainly not in Flo's unique style.

The Obs Pod has become a phenomenal resource. I think it is time for it to be shared very widely on all the main maternity websites. Or perhaps it is too radical, too real ?

Many of the podcasts include really practical information and insights that many pregnant women, new parents and families would benefit from greatly. Other parts will appeal more to healthcare professionals or students looking at career paths - there is something for everyone.

In typical #MatExp style, Flo's many friends and followers are being drawn in to help.

I wanted to create a more visual way to search by topic and theme and enable people also to dip into Flo's many blogs and videos, so I made this new Padlet, themed in line with the key categories of the Ockenden review, a bit like a mini website. I was thinking about how best to collate the 'zesty bits', which pick out the weekly action points but was beaten to it by Deepa Santosh, leaping forward with a plan to create infographics. How amazing would that be!

That is the nature of the #MatExp community - energy draws in more of the same and people find themselves going the extra mile, innovating to amplify each other's stories.

As the creator of Whose Shoes, my interest in the Obs Pod is more to understand the world of the NHS, its behind-the-scenes ebbs and flows, the targets, the politics.

So when I saw the title of this weeks episode - 'Merry-go-round', I got excited. I thought this was going to be a trip behind the scenes, a look back-stage, so to speak. I was not disappointed. In fact I think this episode takes the podcast series to new heights. It is bold, it is real - it is a tour de force, skilfully combining the voice of experience, observing constant movement that doesn't necessarily go anywhere, with the joy and potential offered by a constant flow of fresh-faced innovators. I expected it to be challenging; I certainly didn't expect it to include older monkeys sitting in the trees throwing poo at the upstart younger monkeys below. What a brilliant analogy. 😂

Now, you simply have to listen to it, don't you? Episode 58 Merry Go Round (buzzsprout.com)
So here are my reflections on the merry-go-round episode and how it resonates with my work:

Reinventing the wheel is a time-honoured tradition, particularly in public services.

As an even older monkey than Flo, and having spent many years working in local government, the image I have regularly seen is more of a concertina. The love of endless reorganisation. Structures moving from national to regional to local and back again, several times. Departments merging and then dividing again. Playing a merry tune possibly, but achieving very little.

The image I often have in my mind about the development of Whose Shoes has Merry-go round elements, but is rather more optimistic. It looks like this:

Things go round in circles but simultaneously build.

Seeds are scattered but often seem to fall on stony ground; they lie dormant but then might be gathered up in the breeze and germinate elsewhere: a different project. Flo refers to this with regard to our 'Nobody's Patient' project. It has been frustrating to see how much support there was for our initial work but then, apart from a few rare exceptions such as the extraordinary work in Liverpool, very little effort to use the resources, even though they are now available in at about 80 NHS trusts. Obviously Covid hasn't helped any of this, but I am talking pre-Covid. It is as if it is 'Nobody's Project': consigned to the 'too difficult' box because it actually requires work between departments and organisations, rather than just sitting neatly within one sphere of command.

I have become a philosophical monkey and generally don't throw too much poo. I sometimes get ranty, but hopefully not too often because then people switch off - I think they are more likely to be listening when you are generally positive and then ... go ballistic from time to time.

Change takes time. Culture change in particular takes time. The most powerful #MatExp Whose Shoes concept is our 'lemon lightbulbs' - our belief that people come to their own realisation, they 'get' it; and then this influences their behaviour from that day onwards, not just being told something on a training course .

External things can influence to a point, certainly we can create the conditions for lemon lightbulbs to happen. But it is when people see for themselves what needs to change, and hearts and minds are engaged, that real change happens.

Impatient people like Florence, like Helen Calvert, like Joanne Minford who just grab change by the horns and run with it, are the unusual ones; they are very special leaders who drive us all. I am so proud and privileged to work with such amazing people.

In 2008, I jumped ship from my day job to create Whose Shoes. It has always been a coproduction tool, essentially the same tool as it has always been.

Flo and I talk about tipping points (the same now applies to her podcast and what will help it truly take off). I have learnt that tipping points come and go. But the underlying spiral keeps building. That is probably a more sustainable model?

Fast forward to 2021. Apparently, learning from Covid, the NHS has embraced coproduction at the highest levels. The corridors of power, no less. Coproduction is now to be the 'default way of working'. The way we do things around here. I am on the Coproduction Task and Finish group - Flo's 'Merry Go Round' podcast suggests that this is a very optimistic title, but I will try to be a well-behaved monkey and remain optimistic.

However, I do see a fundamental tension between a) wanting to predetermine the outcomes whilst getting people with lived experience to work with you to achieve them and b) genuinely listening and involving people and valuing the ideas equally at every step of the journey, which by definition might lead to a totally unforeseen outcome. It is exciting, it is scary. It takes a leap of faith. And probably more time than a Task and Finish timeframe - we'll see!

Flo includes a lovely section about her Random Coffee Trial (RCT) meeting with Andrea Gibbons and talks about the power of both formal and informal networking. Networking, for me, is the most underrated QI methodology, but it is catching on.

Things like RCTs would not have happened 10 years ago. Why, when you are so busy, would you randomly meet up with someone that you had never even heard of?

Shock! Horror! Probe! What if you meet .someone who is more senior or more junior than you - the hierarchy in tHe NHS is very strong, so it is good to see our #NoHierarchyJustPeople mantra gaining ground.

In my Whose Shoes work, I will frequently try and link hospitals and teams and ask if they are already connected? The answer can be defensive. Yes, yes they say - but in practice, it is frequently the Heads of Department who are connected. What about the rest of the team?

It is so energising to find an opposite number in another trust who is struggling with the same challenges as you. You can help each other, you might well become friends - it can be fun. Finding our shared humanity is a key theme that runs through all of our work. It cuts through perceived barriers.

I have often felt that some people in the upper echelons of the NHS love Whose Shoes until they hate it. It can be seen as opening a can of worms. It takes a level of confidence and belief to do true coproduction - to uncover the real issues and find out what people think, and then work together to do something about it. Most of the people I work with are passionate leaders; they get this and we make the magic happen together.

Flo gives a really wonderful shoutout in the podcast to my networking skills:

"Gill Phillips @WhoseShoes, who I do so much of my maternity experience work with, is a wonder at networking. she's absolutely amazing at building connections, introducing people with ideas that may work together, lending things from one area of her work to another and also networking people up and down the country. We''ve recently done a couple of workshops on Zoom on continuity of care and we have linked various different hospitals and individuals from different hospitals so they can share ideas on what their approach is and try and test out different ideas together and learn and benefit from that experience."

I genuinely love connecting people, in fact I can't stop myself. I worry that I can be a bit of a pain - I see people doing amazing things and know that they will be stronger together. I link them in my tweets and smile like a Cheshire cat when they connect, especially if they go on to meet in person. It is important. It can be life-changing.

As Flo says, I am now looking to use the 'Nobody's Patient' resources with new networks of people who are interested in improving the working relationships between maternity and neonatal care. A lot of serendipity is happening, The right people are coming forward, and it feels good. No merry-go-rounds in sight.

Flo's podcasts always end with zesty bits. Please listen to her top tips this week on how to avoid going round and round in circles.

Networking to learn and share and NOT keep re-inventing the wheel.

Listen to women and families, particularly flagging up the simple things that can so easily be changed.

Final thought: It was lovely to see the photo of Flo enjoying the merry-go-round. It felt very symbolic. Here I am as a young mum, celebrating my daughter's first birthday.
What goes around, as they say, comes around. Keep going. 😉

I am a big fan of the Obs Pod. It is such a wonderfully simple and yet creative idea. Florence Wilcock, a highly experienced consultant obstetrician, muses and reflects each week on different aspects of maternity care. I don't think anyone has done this before ... and certainly not in Flo's unique style.

The Obs Pod has become a phenomenal resource. I think it is time for it to be shared very widely on all the main maternity websites. Or perhaps it is too radical, too real ?

Many of the podcasts include really practical information and insights that many pregnant women, new parents and families would benefit from greatly. Other parts will appeal more to healthcare professionals or students looking at career paths - there is something for everyone.

In typical #MatExp style, Flo's many friends and followers are being drawn in to help.

I wanted to create a more visual way to search by topic and theme and enable people also to dip into Flo's many blogs and videos, so I made this new Padlet, themed in line with the key categories of the Ockenden review, a bit like a mini website. I was thinking about how best to collate the 'zesty bits', which pick out the weekly action points but was beaten to it by Deepa Santosh, leaping forward with a plan to create infographics. How amazing would that be!

That is the nature of the #MatExp community - energy draws in more of the same and people find themselves going the extra mile, innovating to amplify each other's stories.

As the creator of Whose Shoes, my interest in the Obs Pod is more to understand the world of the NHS, its behind-the-scenes ebbs and flows, the targets, the politics.

So when I saw the title of this weeks episode - 'Merry-go-round', I got excited. I thought this was going to be a trip behind the scenes, a look back-stage, so to speak. I was not disappointed. In fact I think this episode takes the podcast series to new heights. It is bold, it is real - it is a tour de force, skilfully combining the voice of experience, observing constant movement that doesn't necessarily go anywhere, with the joy and potential offered by a constant flow of fresh-faced innovators. I expected it to be challenging; I certainly didn't expect it to include older monkeys sitting in the trees throwing poo at the upstart younger monkeys below. What a brilliant analogy. 😂

Now, you simply have to listen to it, don't you? Episode 58 Merry Go Round (buzzsprout.com)
So here are my reflections on the merry-go-round episode and how it resonates with my work:

Reinventing the wheel is a time-honoured tradition, particularly in public services.

As an even older monkey than Flo, and having spent many years working in local government, the image I have regularly seen is more of a concertina. The love of endless reorganisation. Structures moving from national to regional to local and back again, several times. Departments merging and then dividing again. Playing a merry tune possibly, but achieving very little.

The image I often have in my mind about the development of Whose Shoes has Merry-go round elements, but is rather more optimistic. It looks like this:

Things go round in circles but simultaneously build.

Seeds are scattered but often seem to fall on stony ground; they lie dormant but then might be gathered up in the breeze and germinate elsewhere: a different project. Flo refers to this with regard to our 'Nobody's Patient' project. It has been frustrating to see how much support there was for our initial work but then, apart from a few rare exceptions such as the extraordinary work in Liverpool, very little effort to use the resources, even though they are now available in at about 80 NHS trusts. Obviously Covid hasn't helped any of this, but I am talking pre-Covid. It is as if it is 'Nobody's Project': consigned to the 'too difficult' box because it actually requires work between departments and organisations, rather than just sitting neatly within one sphere of command.

I have become a philosophical monkey and generally don't throw too much poo. I sometimes get ranty, but hopefully not too often because then people switch off - I think they are more likely to be listening when you are generally positive and then ... go ballistic from time to time.

Change takes time. Culture change in particular takes time. The most powerful #MatExp Whose Shoes concept is our 'lemon lightbulbs' - our belief that people come to their own realisation, they 'get' it; and then this influences their behaviour from that day onwards, not just being told something on a training course .

External things can influence to a point, certainly we can create the conditions for lemon lightbulbs to happen. But it is when people see for themselves what needs to change, and hearts and minds are engaged, that real change happens.

Impatient people like Florence, like Helen Calvert, like Joanne Minford who just grab change by the horns and run with it, are the unusual ones; they are very special leaders who drive us all. I am so proud and privileged to work with such amazing people.

In 2008, I jumped ship from my day job to create Whose Shoes. It has always been a coproduction tool, essentially the same tool as it has always been.

Flo and I talk about tipping points (the same now applies to her podcast and what will help it truly take off). I have learnt that tipping points come and go. But the underlying spiral keeps building. That is probably a more sustainable model?

Fast forward to 2021. Apparently, learning from Covid, the NHS has embraced coproduction at the highest levels. The corridors of power, no less. Coproduction is now to be the 'default way of working'. The way we do things around here. I am on the Coproduction Task and Finish group - Flo's 'Merry Go Round' podcast suggests that this is a very optimistic title, but I will try to be a well-behaved monkey and remain optimistic.

However, I do see a fundamental tension between a) wanting to predetermine the outcomes whilst getting people with lived experience to work with you to achieve them and b) genuinely listening and involving people and valuing the ideas equally at every step of the journey, which by definition might lead to a totally unforeseen outcome. It is exciting, it is scary. It takes a leap of faith. And probably more time than a Task and Finish timeframe - we'll see!

Flo includes a lovely section about her Random Coffee Trial (RCT) meeting with Andrea Gibbons and talks about the power of both formal and informal networking. Networking, for me, is the most underrated QI methodology, but it is catching on.

Things like RCTs would not have happened 10 years ago. Why, when you are so busy, would you randomly meet up with someone that you had never even heard of?

Shock! Horror! Probe! What if you meet .someone who is more senior or more junior than you - the hierarchy in tHe NHS is very strong, so it is good to see our #NoHierarchyJustPeople mantra gaining ground.

In my Whose Shoes work, I will frequently try and link hospitals and teams and ask if they are already connected? The answer can be defensive. Yes, yes they say - but in practice, it is frequently the Heads of Department who are connected. What about the rest of the team?

It is so energising to find an opposite number in another trust who is struggling with the same challenges as you. You can help each other, you might well become friends - it can be fun. Finding our shared humanity is a key theme that runs through all of our work. It cuts through perceived barriers.

I have often felt that some people in the upper echelons of the NHS love Whose Shoes until they hate it. It can be seen as opening a can of worms. It takes a level of confidence and belief to do true coproduction - to uncover the real issues and find out what people think, and then work together to do something about it. Most of the people I work with are passionate leaders; they get this and we make the magic happen together.

Flo gives a really wonderful shoutout in the podcast to my networking skills:

"Gill Phillips @WhoseShoes, who I do so much of my maternity experience work with, is a wonder at networking. she's absolutely amazing at building connections, introducing people with ideas that may work together, lending things from one area of her work to another and also networking people up and down the country. We''ve recently done a couple of workshops on Zoom on continuity of care and we have linked various different hospitals and individuals from different hospitals so they can share ideas on what their approach is and try and test out different ideas together and learn and benefit from that experience."

I genuinely love connecting people, in fact I can't stop myself. I worry that I can be a bit of a pain - I see people doing amazing things and know that they will be stronger together. I link them in my tweets and smile like a Cheshire cat when they connect, especially if they go on to meet in person. It is important. It can be life-changing.

As Flo says, I am now looking to use the 'Nobody's Patient' resources with new networks of people who are interested in improving the working relationships between maternity and neonatal care. A lot of serendipity is happening, The right people are coming forward, and it feels good. No merry-go-rounds in sight.

Flo's podcasts always end with zesty bits. Please listen to her top tips this week on how to avoid going round and round in circles.

Networking to learn and share and NOT keep re-inventing the wheel.

Listen to women and families, particularly flagging up the simple things that can so easily be changed.

Final thought: It was lovely to see the photo of Flo enjoying the merry-go-round. It felt very symbolic. Here I am as a young mum, celebrating my daughter's first birthday.
What goes around, as they say, comes around. Keep going. 😉

Twitter - Join the@MatExpBazaar!

# data[].attributes.attachment_link.title
Merry Go Round - reponse to #TheObsPod Episode 58

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I am a big fan of the Obs Pod. It is such a wonderfully simple and yet creative idea. Florence Wilcock, a highly experienced consultant obstetrician, muses and reflects each week on different aspects of maternity care. I don't think anyone has done this before ... and certainly not in Flo's unique style.

# data[].attributes.attachment_caption
‎NHS England and NHS Improvement Podcast on Apple Podcasts

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My own favourite podcasts….what do I listen to ?

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My own favourite podcasts….what do I listen to ?

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‎NHS England and NHS Improvement Podcast on Apple Podcasts

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Episode 5 - Pandemic poems - Wild Card - Whose Shoes?

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The story of the pandemic, told in poems. Extract from our #VirtualWhoseShoes work

# data[].attributes.attachment_link.readable_text
In the early part of the pandemic, early summer 2020, we ran a series of #VirtualWhoseShoes sessions, sharing innovative best practice during the pandemic and exploring the particular challenges faced by different groups of people. The work was influential and led to a lot of interesting speaker opportunities, as well as helping people ( including us!) realise that we could keep our core business going and enabling us to run adapt our workshops among them online.
You can read the report here: https://fabnhsstuff.net/fab-stuff/the-whose-shoes-phenomenon-a-catalyst-for-change-in-health-and-social-care

Today I have collected some of the most popular ones - using poems to tell the story of the pandemic. I hope you enjoy listening - and possibly even more I can imagine as listening to this episode in a few years time. I wonder what memories it will evoke?

Key lemon lightbulbs include ... 🍋💡🍋

Let's hang onto the best things we discovered during the pandemic

No hierarchy just people.

Teamwork and valuing everybody

The power of community

Cutting through the bureaucracy to make things happen quickly for the benefit of patients

Valuing key workers; realising how we are all connected and interdependent

Being grateful to people who keep us safe and for the risks they are taking

Awareness of deep inequalities and wanting a fairer society

Nature and other simple pleasures

(Missing) getting together in person and having hugs

How much are you still appreciating and determined to hang onto these, for ourselves and for others, as the world opens up?

To learn more about Whose Shoes, please browse Padlet: https://padlet.com/WhoseShoes/overview

Our podcast Padlet: https://padlet.com/WhoseShoes/WildCard

Please subscribe to follow the podcast series here: https://whoseshoes.buzzsprout.com/
And please leave a review!

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Episode 5 - Pandemic poems - Wild Card - Whose Shoes?

# data[].attributes.attachment_link.description
In the early part of the pandemic, early summer 2020, we ran a series of #VirtualWhoseShoes sessions, sharing innovative best practice during the pandemic and exploring the particular challenges faced by different groups of people. The work was influential and led to a lot of interesting speake...

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Why does it seem like we are offering induction to more women for a big baby? Are babies getting bigger ? What drives us to offer intervention?

# data[].attributes.attachment_link.description
Why does it seem like we are offering induction to more women for a big baby? Are babies getting bigger ? What drives us to offer intervention?If you want to know more detail about the topics discussed in this episode these links may help: https:/...

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Episode 20.  NHS England Shine A Light on Coproduction – 2022 with #FabObs Flo

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Episode 20.  NHS England Shine A Light on Coproduction – 2022 with #FabObs Flo

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& years of coproduction in 20 minutes - GO!

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0:11
My name is Gill Phillips, and I'm the creator of Whose Shoes, a popular approach to co-production. I was named as an HSJ 100 Wild Card, and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

Gill Phillips 0:45
The last couple of weeks have been busy and exciting. We've had some interesting invitations to work with NHS England, and showcase some of our Whose Shoes work and the impact it's having. It's been rewarding to find so many people who really care about co-production, and finding out what matters to people using health services. First, we did a 'Shine a light on co-production' session as part of a bi-monthly series organised by NHS England Experience of Care team. In terms of how best to use the opportunity, I really struggled with this one. I agreed to it three months in advance. But our work is a social movement rather than a project. So there's always something new happening. How could we know three months in advance what we want to talk about? Anyway, in the end, we delivered my ambition to make it super topical. And the Wild Card Whose Shoes podcast really helped with that. I'm just beginning to realize what a powerful resource it is in terms of being able to drop in, obviously, with permission, clips from people talking, and so on. Hang on in there. And I'll share some of the highlights in today's episode.

Gill Phillips 1:57
The second invitation was a lot more JFDI. And my ideas came together very quickly, as the topic was not so vast. And I didn't feel such a huge sense of responsibility in terms of doing justice to many years of work with input from so many amazing people. So what was this second opportunity? James Mountford, Director of National improvement strategy at NHS England, runs some lovely huddle sessions, bringing together a really caring and thoughtful group of mainly NHS people, and asked someone to be a theme leader for a discussion around a thought-provoking topic. So this month, it was me. My topic was "What does it mean to walk in someone's shoes? What are the benefits for healthcare professionals?" I loved it, and quickly noted some ideas down on my phone. Creativity is very subjective, isn't it?

Gill Phillips 2:55
And then a third invitation. A couple of days ago, I agreed to do a session for the NHS Graduate Management Trainee Scheme, looking back and reviewing the learning over the pandemic, and how we can all build the future together. Well, I absolutely love working with people at the start of their careers, and also getting involved in anything around clinical education because the work I've done with the Darzi fellows for many years now has been really exciting. So that was great. And then amongst all this, do you remember that podcast I had a few weeks ago with Dr. Terri Porrett, who runs fab NHS stuff with Roy Lilley? Well, live on the podcast, Terri and I came up with the lemon lightbulb idea of setting up a Fab NHS Stuff campaign page for #MatExp and Whose Shoes. Here's what she said:

Terri Porrett 3:48
Absolutely Gill, and I can make you a campaign page. All of this can go in one central place. So all we need to do when we want to refer people to this - one page, one campaign page and they will find everything with this hashtag on that one page can even sort it. It's so simple to do.

Gill Phillips 4:07
Well. Terri followed through on that pledge with amazing ... everything really - spontaneity, speed, big JFDI. And she has set us up with a Whose Shoes #MatExp campaign page. And every day they're adding and tweeting different examples of our work over the last few years. Check it out FAB NHS stuff. We're loving it, it's just brilliant. So it's been an energising and slightly exhausting start to 2022. So coming back to our shine a light on co-production session. What to do? I chatted it through with my magic mate Florence Wilcock, consultant obstetrician at Kingston hospital and my co-founder of #MatExp. Flo agreed to lead the session with me, which was brilliant, focusing on our #MatExp work (so that's maternity experience) and choosing just one element of the powerful co-production work that's been done by our wonderful JFDI #MatExp community pretty much every day since that fateful phone call back in 2014. These are just some highlights from our session. You can watch the whole presentation. I've just published it on my YouTube channel. And we'll provide a link in the program notes. But I've got to go the phone's ringing. I wonder who that is ...

Florence Wilcock 5:34
Hello, hello, my name is Florence. I'm an obstetrician at Kingston hospital. And I've been seeing all sorts of dementia workshops in Kent on Twitter. And I'm part of the London Clinical Network, looking at maternity experience, do you think Whose Shoes would work in maternity care?

Gill Phillips 5:57
Oh, that's a really interesting question. Kath Evans asked me that a while ago. And the rest, as they say is history. So how do we tell you about the work that we've been doing since June 2014? I think to start with giving you a taste of one of our workshops so this is a #MatExp workshop working with the fabulous maternity team in Brighton.

Gill Phillips 6:42
Yeah, I think you're gonna have to watch the YouTube video for this bit. Honestly, we had the most amazing session, Brighton and Hove Football Club. We had an absolutely fantastic team to work with everybody there, midwives, obstetricians, local charities mums and babies. A Baroness you name it, we just had the most amazing session and Flo took part in this dance after lunch and we had fantastic pledges, the kind of things we can follow up now with Fab NHS stuff. And it was on International Women's Day.

Voice of mum from the video: Positive change can be made.

Gill Phillips 7:22
That is co-production to us. So this approach has now got over 80 NHS Trusts using the Whose Shoes approach in maternity care. And we do work around lots of different topics as well, as you heard from Flo, the big work that we did around dementia care back in 2013-14, and since, was the driver to actually bring this approach into maternity services. And now we do virtual sessions as well. Although we do really prefer being in the room with judging the cake. It's more fun. For the session today, seven and a half years of co-production in 20 minutes. You ready, Flo?

Florence Wilcock 8:02
Yes, I am.

Gill Phillips 8:03
So it's got to be our biggest platform. Yeah, I'm not quite sure how it happened. It would need a whole different session to tell you about #MatExp the Musical on the main stage of NHS Expo, and our lovely baroness part of that. And all the different perspectives, which is such an important part of Whose Shoes, a tiny taster here.

Gill Phillips 8:50
A safe birth experience of your choice. That's pretty much what needs to happen in maternity care. So creativity, lemons and social media. Why do I call you one blog Flo, Flo?

Florence Wilcock 9:05
Because you asked me to write a blog, and I wasn't sure about it. And I was writing it. And my husband said, What are you doing? You're spending time doing this? You haven't got time, and I went," Okay, I'm just gonna do this one blog for Gill". And I did it and I never looked back. So I feel like working with Gill, has unleashed a bit of a creative side of me that I didn't really have the opportunity to think about in my kind of day to day, being an obstetrician. And this is more from writing a blog for Gill to writing a blog, or blogs for the BMJ, to stories. And now I have a podcast. So yeah, it's it's kind of grown from that one challenge to write one blog.

Gill Phillips 9:58
And your podcast is now ... how many episodes is it?

Florence Wilcock 10:03
I'm just recording episode 88 This week, yeah, 88.

Gill Phillips 10:07
And the other resource for people to dip into - all aspects of maternity care aimed at people who ... what I love Flo, is when you say sometimes, "you might think this is a bit odd". And it's just at the moment, I'm thinking "things were a bit odd". So good, you bring it alive for people. And that's what it's all about.

Florence Wilcock 10:26
Thank you.

Gill Phillips 10:27
So a big shout out from me for the ObsPod. And we went on to talk about pledges. And to show some examples. Some of this stuff obviously works better in the live presentation with pictures and slides, and so on. And so dip in and take a look at the video. So the challenge was, with all these rich examples of best practice, how to do justice in about 20 minutes, we decided to focus down on the middle of our three big maternity projects, nobody's patient, because that's about women and families who fall through gaps in services. And within that, we decided to focus on just one of the groups. It's like a sub theme of one of our projects. But it's just got so much energy at the moment. And this is the story we're trying to get across. This is not a project. It's a social movement, and the energy keeps going on and on. So I've been a nightmare with this presentation, trying to bring in things that are really topical. Now, because that gives you a flavor of just how something's always happening. So families with newborn babies in neonatal units. So Flo tell us a bit more about 'Nobody's patient'.

Florence Wilcock 11:36
So there was a challenge fund, and there was some money for doing a project in maternity experience. And we decided because they'd called it the MatExp Challenge Fund, which was really our hashtag, that we had better bid for it. And overnight, I didn't really have many thoughts. And then I woke up in the middle of the night, which is sometimes what happens with an idea. And it was based on one of our parent leaders, Leigh Kendall, who'd had a very premature baby, she had a life threatening illness herself. And her baby boy Hugo was in neonatal care when she was in intensive care. And I knew her story. And it suddenly made me think this is the opportunity to close those gaps, the gap between maternity services and neonatal services. So one is a paediatric department, the other is maternity department. Can we try and close those gaps? And while we were putting together the bids, which involved several parents, the London Clinical Network, my hospital, my local tertiary centre, St. George's, as well as Gill and Anna, who does our lovely graphics. Well, while doing that someone tweeted that they felt like nobody's patients, because they felt they were stuck between maternity and neonatal, they didn't belong to anyone. They were nobody's patient. And that's how we came up with the name.

Gill Phillips 13:06
We could invite loads of people to join us. We're all equals together. Today we happen to be hearing from Helen Calvert who again, like Leigh Kendall, was one of our amazing mum leaders, parent leaders within this work and not just being involved there. I use tye wild horses emoji every time I talk about Helen and the work that she did, so let's hear directly from Helen.

Helen Calvert 13:30
Theoretical mommy. Six days old, so fragile, so new. He'd been in intensive care. Now moved to HDU I wasn't too sure what I was meant to do. Still wired up, a drain in his tummy. I felt like a kind of theoretical mummy. Okay, come on, Mum. You change his nappy. The voice was abrupt, verging on snappy. You're going to have to learn how to do this, you know. At best, robustly encouraging. She was clearly the boss, years of experience under her belt. Or she didn't give a toss. Not a clue how I felt. I felt she wanted to kick my backside. I felt sick. I just wanted to hide. I turned around and walked off the ward. Did nobody see I was anxious or frightened? I started to feel guilty for behaving so badly. And no one suggested I shouldn't feel that way.

Helen Calvert 14:42
Hi, everyone. I'm Helen Calvert. And thank you so much to Gill Phillips for asking me to talk to you all about co-production today. My journey with Gill, co-production, Whose Shoes, maternity, all kinds of different campaigns and all kinds of experiences started when my youngest son was born with a congenital heart defect. He has hypoplastic left heart syndrome. And he's had three major surgeries and one minor, he's now seven years old, doing very well. And whilst I was in hospital with him in a paediatric hospital with him when he was about five months old, I really saw the lack of qualified breastfeeding support on paediatric wards and in paediatric hospitals. It was very noticeable. And I already had quite a substantial network of mums, because I was running a Facebook group for mums at the time. And it became apparent this was quite a widespread issue. So I took to Twitter, which I had never really used before, to find people in the breastfeeding world and in the paediatric world who were interested in this as an issue to discuss. And I met some amazing people, fantastic people working in all areas of infant feeding, lactation, paediatrics, put together a great network quite quickly, actually, there was a lot of enthusiasm. And that led to the hospital breastfeeding campaign, which I ran for a few years. And I had the privilege of handing that baton to the Hospital Infant Feeding Network, which has been set up by doctors Victoria Thomas, and Ilana Levine, if you're not aware of their work, do look up hifn.org. And they have a group on Facebook. So they are now leading the charge when it comes to infant feeding support on paediatrics. And that would not have happened if it wasn't for the conversations that I started having, and that people started having with each other through these networks. So that is just incredible to me, because I'm still in the Facebook group. I'm not involved in the campaigning any more, but I can see not just the progress that's being made. But the conversations that are happening, the people who are talking to each other from different hospitals, from different areas, from different professions, lactation consultants, private practice coming together with NHS. And it's just so wonderful to see the right people having these conversations together. So that's really exciting. Part of being on Twitter meant that I met Gill, and Flo who run the #MatExp campaign, maternity experience campaign, and I got heavily involved in that as well. And that's how I came across Gill's incredible Whose Shoes methodology, which I am just such a fan of, because it's all about bringing the right people together to have these conversations. And I think we all know that getting people in a room, getting the right voices together, hearing from a diverse group of people is important. But what Gil does, is there are no token voices in Whose Shoes. So if you are a group of parents, then the healthcare professional is not the token voice. If you're a group of doctors, the patient or the patient-parent is not the token voice. You're all equal. You all have valid things to say. And there's no hierarchy. It's just people all talking together with equal input. And it's the questions that are asked that really get you and really make you think differently about issues that you might have had strong views on for such a long time. So I really enjoyed that methodology and seeing how Gill worked and seeing how she just uses energy, goes where the energy is and just brings people together to have these vital conversations. And it was such a privilege to be able to connect her with Joanne Minford at Alder Hey Children's Hospital, which is where my son is looked after, and Whose Shoes came to Alder Hey, which was just incredible. And I was able to attend a day with the Whose Shoes game being played by board members, parents, nurses, janitorial staff, to everybody just exactly who you want just everybody in the room and having these really important discussions. And that was such a joy to see. And it's not that the parent voice isn't listened to in the NHS, it really is. But it's often on quite a tokenistic basis. And also, it's often quite piecemeal. But when we have these amazing networks and collaborations using things like Twitter and Facebook, it's not piecemeal, you can start to build a web and you can see the overlapping diagrams of who knows who and who's involved with who? And who should be talking to who? So we're not reinventing the wheel, we already know, Oh, yes. so and so's done that in another hospital that we put you in touch with them, which is just so powerful.

Gill Phillips 20:13
So I think if you thought that was powerful, that was Helen Calvert telling, if you imagine an iceberg, I'd say that the little snippet that she had there, in terms of both her contribution, it's the little tiny tip sticking above the water, she did so much. And also the story on what happened at Alder Hey and using regular Whose Shoes workshops, a series of them, and uniting behind the key messages, not what 'I think' anymore, but what 'we said', using the powerful graphic records, and ultimately leading to a new neonatal unit in Liverpool. That is a huge story. So those resources, Theoretical Mummy, one of the many poems, we've always used poems in Whose Shoes and as Helen said, crowdsourced scenarios, provocative, really trying to reach the parts that other tools perhaps don't reach in terms of the real issues that people need to talk about. And that's where, in a way, it got really exciting because we were able to build on the work that was originally done in Nobody's P atient and bring it bang up to date talking about Family Integrated Care, talking about the scenario that we wrote, for Whose Shoes all those years ago, when Family Integrated Care just seemed to be an innovative idyllic practice in Canada, whereby the parents of children in the neonatal ward are actually the primary carers. Our scenario included the words, "if parents are not fully involved in the care of their baby, what hope is there that they can explain things to their GP, health visitor, or other professionals when they finally go home". And again, a poem shared at the Shine a Light session, illustrating that when things don't join up, parents can feel that they are nobody's patient. Falling off the Pathway was a poem that you particularly love, I think Flo? Would you like to read that one for us?

Florence Wilcock 22:14
Absolutely. It's Falling off the Pathway. I was on the postnatal ward, my baby was in NNU. All too often, I simply hadn't a clue what I was I meant to do. You had to be in postnatal to order your food, about an hour before the meal, and then be there to actually eat it. It all became such a big deal. We mums we tried colluding, I'll stay in NNU. You order for me, I'll order for you. Hoping mums and babies could all get to feed. Needless to say, we didn't succeed. I kept missing meals spending time with my son. There simply wasn't time to get everything done. Sore from my caesarean, , I shuffle along, a fairly short corridor, unbelievably long, security requirements and hygiene demands, stopping at each door to wash my hands. I was literally going back and forth all day. Please, let's build a joined up pathway.

Gill Phillips 23:31
Thanks, Flo. And how ironic that that poem four years ago used the word 'pathway' . As Cristina and many people on the session will know, that's not my favorite word. So let's not go there.

Florence Wilcock 23:44
And I'm thinking that it's got security requirements - the door which we're going to come on and talk about in a moment,

Gill Phillips 23:53
As at yesterday. And that's got really exciting in terms of the coming of age, if you like of the podcast, in that we're now able to bring in clips directly from the podcast into our presentations. And so to bring the voices of Nadia and Rachel from last week in front of 150 people, in fact it was slightly more than that, wanting to learn about co-production at an NHS England shine a light session. So have you got any examples? I mean, just something simple that we could perhaps include as a clip, as what is co-production with parents.

Rachel Collum 24:31
We've got some really great work happening at the minute in our Parent Advisory Group in the Northeast. I think that's pretty much what the group is about, really. So we're very lucky that the care coordinators who we work with, absolutely want to know what parents not just think but what ideas they have and what they would like to see happening on the units. So they will often bring us a problem or an issue that they've seen parents struggling with who are currently on the unit and then they've basically asked us to run with it. So we'll have brainstorming sessions of things that we experienced. And that's nice as well, because there's so many different perspectives on the parent group. So you've got some people whose babies have left the unit very recently, others who were there during COVID, you've got some whose babies came home perfectly healthy, others whose babies came home with more complex needs, we've got parents of multiples, think we've got one set of parents whose baby sadly died. So you've got so many different perspectives. And we really work with the care coordinators. And it's not a tick box. And actually, I would say, kind of, we tell them what we would like to see happen, and they really take it on board. So from that we're developing what's been called a parent passport, which is the idea that when you come home, there are certain things you want to feel confident or empowered to do with your baby. There's been a lot of different iterations of these booklets or leaflets for coming home within the past, and they've been quite heavily competency based. So it's almost like a tick box discharge thing. You know, come on feed baby, come on, keep baby warm, Does mum know who to contact if baby's not breathing, this kind of thing. The feedback from the parent group has really been about moving away from that idea of competency, which feels quite judgmental when you're a parent and again, is about almost 'Are you capable of looking after your own child,?' which is not how you want to feel when you're about to come home after a 10 week stay on the NICU. So it's much more about what support is out there. What can we do to help parents while they're on the unit so that when they come home, they can feel more confident. So that's been a really completely co-produced booklet. Similarly to that there's another project I've been involved in, that's been completely parent-led to develop some aids to use on the neonatal unit, again, all about empowering parents and helping them ask medical staff the questions they want to ask and feel more involved with their baby. And that's been completely parent-led, like the ideas came from parents based on focus groups and interviews, the design of the aids was all driven by parents. And it's come through a few different iterations now. And each time it's gone back to parents to get their input before we fed it back into the unit. So what you end up with is a product developed by parents, for parents who really get it and get what that experience is like. And I think the parent advisory groups are just invaluable. And I know there's some brilliant ones across the country, because it means parents have been given a voice and an opportunity to get things out there on the unit like that.

Gill Phillips 27:36
That felt like a brilliant step forward in terms of sharing good practice and helping these people with lived experience and the other fantastic voices on the podcast, be heard in a wider audience. And obviously now in the YouTube video as well. So is this area the next #MatExp? It feels as if it is. The networks that are coming together around this area, people connecting with each other, sharing best practice, it just feels so exciting at the moment. So that was the reason we chose this filter, if you like to go down in terms of the session we're doing today. That's the Shine a light session. I don't want people to get lost here. And Flo was listening to last week's podcast with Nadia and Rachel ... ripples, lemon lightbulbs, direct outcomes . Flo,, what happened?

Florence Wilcock 28:27
So I was listening to the podcast on my way to work yesterday. So I often listen on my drive to work. And even though I've done all this co-production with you for years, as you've said, I love it when I hear something new. And they were talking about the fact that you have to press the buzzer to get into the neonatal unit because there's security. And it's important to protect the babies. And they had to press the buzzer, and therefore they had to wait for someone to let them in. So they're actually locked out from their own baby. And I had never thought about it in that way, ever. And they made a really simple suggestion that you could just have a fingerprint, so that when a baby was born, you record the parents fingerprint, and then the fingerprint could access them into the neonatal unit while their baby's there. And then when the baby's left, you can always remove that fingerprint, can't you? And I just thought, oh my god, I have never thought about the fact that you actually can't get through the door to see your own baby, you're locked out. And so I immediately tweeted Born Too Soon, which is our neonatal charity set up by an amazing woman called Pauline, who I know very well and who did the Nobody's Patient project with us. And I'm hoping that by tagging her in, we might be able to do something quickly about this where I work. But yeah, just a lightbulb for me. Even though you kind of think you're there and you're women-centered, and you've kind of learned everything there is to learn and then you realise, you still haven't. There's, there's always something new always.

Gill Phillips 30:11
And that's why I love working with you- Flo is so kind of honest and open to those conversations and possibilities. That for me is what it's all about. I want to do these podcasts, not just as a way of sharing stuff, but people say they want to listen to lived experience stories, I want them to listen, and I want them to do something about it. So that was yesterday.

Florence Wilcock 30:32
The other bit of the podcast that caught my attention was, I don't know if it was Rachel or Nadia talking about what his Family Integrated Care like for professionals, because one of the key things about our co-production is, it's not just about lived experience, it's not just about listening to the parents, it's about listening to the professionals. Because the professionals may have anxiety about changing things, letting go, allowing (I use that word in inverted commas), parents to do more, and what impact that will have on the safety of the babies or what their working practice is like. So co-production is about listening to all sides, not just one side. So it'd be wrong to think that replacing and bringing in lots of lived experience is the only answer, you've got to listen to everything.

Gill Phillips 31:33
And that obviously is central to Whose Shoes, our scenarios are from all perspectives. And that's the power of it, not just listening to any one group. But people suddenly realizing what it's like to be on the other side of the fence. It's something that comes up over and over again. And then almost a kind of feeling of relief and actually talking together. So an old tweet from Cristina, I found co-production, lived experience, but also listening to the stuff - but it is everyone - is catching fire. And it's exciting. We do have more formal outcomes as well. Depending on obviously the support we get with different things. So from our three big maternity projects, that's the generic maternity project. Nobody's patient, the one we're talking a little bit about today, and #MindNBody which is around perinatal mental health, we've managed to come up with three books of very, very transferable, adaptable case studies. Help us share them, they're not reaching people in the way that perhaps they could do. And sometimes if links are broken in, you've included that in goodness knows how many blogs, we all need to work together and make sure the whole thing joins up. So another very quick example, but one I'm so proud of, and Alice has been a guest on the podcast series already. Dr. Alice Ladur, who we connected with at one of our Whose Shoes workshops, we've translated and adapted and goodness knows what some of the cards into Luganda, the local language they use in Uganda. And Alice has just won the Vice Chancellors award at Bournemouth University for her PhD work using Whose Shoes with men in Uganda. And it's being written up at the moment on the Patient Safety Learning hub. Yes, we have loads and loads of examples. I've just tried to pick out a few highlights. So let's leave the women to finish our session. This is what MatExp is about.

Group of Mums:
Sarah -Jane challenged us to do a RAP,

To tell you about #MatExp and put it on the map

We mums are here to help lend a hand

To tell you how we feel and help you understand

.We do stuff together, we get things done.

Come and join us, #MatExp is fun

Gill Phillips 33:55
So again, that is probably one best to see on the video! And a big rallying call, "come and join us. #MatExp is fun". The FUNdamentals of building social movements. Fun sits right the way through it. We use lemons, what are you going to use? So that was the end of our presentation with NHS England and then we had a bit of fun around love and lemons with Cristina and the Experience of Care team. It's not quite the same if you can't see the enormous basket of lemons that Cristina brought back from Madeira.

Cristina Serrao 34:28
That's absolutely wonderful. And I'm going to butt in here just because I have been away for some people that don't know. And I've wanted to bring them upstairs to show how many my mum got into the suitcase that there is a whole load of lemons I'm going to count by the end, but I think yeah, I've definitely got about 15 lemons, so you've definitely had a massive influence on me. Thank you, Gill

Gill Phillips 34:49
And you Cristina, we love you.

Florence Wilcock 34:53
Those lemons are brilliant.

Gill Phillips 34:55
And I have now just finally passed my lemon stress ball to Mr. Whose Shoes so that he can go away and make what he wants of that. There was then a really good question and answer session, obviously, not just with us but with the other people on the session. I get asked specifically about taking Whose Shoes online - our virtual Whose Shoes sessions, so I'll just share my answer here.

Cristina Serrao 35:20
So that comes back to me. I've been busy looking at all the exciting stuff and trying to keep my excitement in check, which never very good with me. But anyway, guys, the number one question that came very, very early on - how'd you do it virtually? I want to get to you first Gill, - virtually , how did you have to change things?

Gill Phillips 35:39
Well, to be honest, to begin with, I didn't want to. For me, Whose Shoes was so much about a face to face approach and judging the cakes and bunting and hugs and so on. I thought I might actually take a break for a bit at the beginning of the pandemic, but other people had different ideas. So our graphic artists were very, very keen to kind of keep the approach going. And lo and behold, Mr. Whose Shoes came to the party, didn't yo?. So Colin is very good at the geeky techie stuff. And so it's a big challenge. And I think, basically, what was the success was trying to make sure that we substituted something equally good. So to set out and not try and do the same thing online. But to tap into the things that you could only do online. And it became a kind of minute by minute planning the Whose Shoes sessions we did. Colin managed to bring the board game online throwing the dice, bringing the scenarios up. But they weren't random. They couldn't be random. It was kind of like a planned conversation in terms of Well, how about this? And how about that. So we did six sessions, which I think were the biggest learning curve of our lives during the pandemic, where we were having the double aim of testing out the technology. So we did a series of six weekly sessions, with virtual Whose Shoes all around the pandemic. And really challenging topics, I've seen the chat, people who are disproportionately affected. One of our sessions was working with people from black and ethnic minority communities, getting them leading the sessions, doing it online. Honestly, I felt so far outside of my comfort zone. But the feedback was really good. And we did even manage to write it up in a report which is unheard of, for us. Now a little snippet into Whose Shoes - apparently the Scottish Government were interested. I don't know whether they were or not because we never heard from them. But it did mean that we actually used that as the excuse to write a report which wouldn't have happened otherwise. So sometimes we can like find ways around things, but the virtual sessions we've ended up doing around really sensitive topics. So for example, people sadly losing babies in pregnancy or stillbirth and so on. And we had two sessions lined up before the pandemic, which Flo was very, very much part of so Flo, you were live at the event in Colchester, a face to face event just before the pandemic March 2020. And it took us 10 months to do event number two with Gloucestershire, because we were so keen to think through every aspect, and the event in Gloucestershire virtually ended up being extraordinary in that who's in the room who's in this co-production. We had 15 bereaved couples, they could turn their cameras off, if they wanted to, they could be sitting there quietly having a hug behind the scenes, they could be commenting in the chat rather than having to do anything public whatsoever. We had the obvious midwives, obstetricians, families, but we also had the hospital chaplain, we had medical photographers, we had the local GP, we had charities, we had Sands UK. And then we had speakers from other parts of the country. Now, we couldn't have done that in quite the same way in the live event, because we were able to add extra viewpoints and perspectives. So sort of final message really is it's not easy. It's got to be very, very sensitively done, and it's exhausting. So we're so keen to get back into face to face workshops, and we've actually managed to do a few. So we've had a face to face workshop with a children's hospice recently. And the emotion in the room, you can imagine such a sensitive topic, but for people to be able to come together, face to face to talk. It was quite extraordinary. So bit of a longer answer, but it's it's subtle, and it's difficult. So Flo and I had a bit of a rant about co-production and making it real and how perhaps our Nobody's Patient work hasn't had as much impact as it could have had, how the resources that are already out in hospitals could be used a bit more effectively.

Florence Wilcock 39:46
So if you see a gap, and I'm hoping today will light a bit of a fire again, to take these things and run with it because yes, you're right. It's got some outcomes, but not nearly enough.

Gill Phillips 40:00
And that clearly has been like Nobody's Project potentially. And that is the challenge of co-production. So for a Whose Shoes workshop ... people love it, and a maternity unit can run a session because they're in control of it. But as soon as things start to be genuinely owned by different services, it's in danger of being Nobody's Project. It takes someone like Joanne Minford, the fantastic pediatrician up in Liverpool, me with the foresight to license their package across Liverpool Women's and Alder Hey. And for the chief executive support it - these are the kind of factors that actually make the magic outcomes like a new neonatal unit.

Helen Lee 40:42
Yeah, I was just gonna say, and absolutely we, it is about putting your money where your mouth is, and doing it. And we are doing some things nationally, to try and better align things. We're doing work with the Improvement Directorate to align co-production. So co-production needs to be at the heart of what we do, that we can't improve services if we're not doing that in partnership with people with lived experience. We've got a long way to go with that. But we are championing that and we are seeing some movement and we are seeing a shift nationally where other programmes, their interest is piqued. And they're asking questions about ... can you come and talk to us about that, because we would really like to understand a little bit more about it, and shift, shift it and we will get there. I have every confidence that we will get there. And it's just so amazing that we've had we've had 155 People join today. So fantastic. Thank you very much, everybody. It's been really interesting.

Cristina Serrao 41:36
A great way to start the year..

Gill Phillips 41:42
I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favorite podcast platform. And please leave a review. I tweet as @WhoseShoes, thank you for being on this journey with me. And let's hope that together we can make a difference.

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20. Shine A (Lemon) Light(bulb) on co-production - Wild Card - Whose Shoes?

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Gill Phillips and Florence Wilcock, co-founders of the powerful #fMatExp social movement, talk about the coproduction work they have done together since 2014. To make this manageable in 30 minutes, they choose a small but hugely important area of ...

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The FourCast

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Black women report being dismissed and neglected by healthcare professionals throughout pregnancy, childbirth and beyond - and are four times more likely to die in childbirth than women of other ethnicities.
So could inducing pregnant Black women, bringing their birth forward early, address that problem?
That's what one prominent medical committee, NICE, has proposed.
Today we speak to a doctor who says it'll make birth safer for mums and babies, and a campaigner who says that early induction is not the solution to a deep and complex issue, rooted in racism and inadequate healthcare for Black mothers-to-be.
And a warning, this episode includes discussion about maternal death and stillbirth.

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how can we make birth safer for black women?

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‎The Fourcast: How can we make birth safer for Black women? on Apple Podcasts

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‎Black women report being dismissed and neglected by healthcare professionals throughout pregnancy, childbirth and beyond - and are four times more likely to die in childbirth than women of other ethnicities. So could inducing pregnant Black women, bringing their birth forward early, address that p...

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Angela Cornwall - Speedy boarding

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#HSJ100 Wild Card - the context for The Obs Pod Episode 65

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#HSJ100 Wild Card - the context for The Obs Pod Episode 65

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Whose Shoes Wild Card podcast series - passionate people who have views on the future of the NHS, health and wellbeing ... life!

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It has been an exciting time. Out of the blue, I was named as a #WildCard as part of the #HSJ100 2021 👀, alongside some big names like Marcus Rashford, Gareth Southgate, Greta Thunberg and one or two friends, in particular fab Clenton Farquharson MBE.

I am a bit ambivalent about all the different awards, but the idea of being a *wild card* appeals to me! 😀
I had seen that the HSJ had put a call out on Twitter to ask people to name some 'not usual suspects' whom the new NHS CEO should listen to. 👂🏼

Who should the new NHS England chief executive - due to be appointed in the next few weeks - be listening to as they get started?

HSJ wants to highlight people outside the usual health and government hierarchies who the new boss would do well to learn from and listen to.
- Health Service Journal (@HSJnews) June 9, 2021

They should offer a different perspective to those likely to get access. They may be unusually clear thinking, be good at "big systems", or a patient articulating their experience. Could be from another field altogether, or a health leader from overseas who we ought to emulate.
- Health Service Journal (@HSJnews) June 9, 2021

One or two fantastic people recommended me.

Totally agree Gill is exceptional in accelerating co production in healthcare & asking the challenging questions
- Flo W (@FWmaternity) June 9, 2021

Another vote for @WhoseShoes - without question the most innovative, inclusive and impactful person working to create meaningful change.
- ClearDay (@yourclearday) June 9, 2021

Anyway, I think that was the catalyst to be named in #HSJ100, 20 Wild Cards, so thank you very much.

More importantly, I started to think about how to make the maximum impact from this opportunity.

As the creator of 'Whose Shoes', I see myself very much a catalyst for change, bringing in lots of different voices.
So I started to put out a challenge on social media, asking other people what they would like to tell the new CEO of the NHS when he/she is appointed.

I was thrilled when my #MatExp partner-in-crime, Florence Wilcock immediately took up the challenge and produced a special 'Wild Card' episode in her engaging the Obs Pod podcast series.

Flo speaks from the heart, as a highly experienced and caring obstetrician, and it is very powerful.
You can listen to her thoughts here:

There were also some interesting conversations and ideas on Twitter and LinkedIn. So many people have wonderful contributions to make, but don't always have a voice.

I had a 'lemon lightbulb' idea ...

Perhaps I should start a podcast series myself, just chatting to different people.

Just as Flo's podcast has developed into a fantastic bank of material for anyone interested in maternity care, I thought perhaps I could aim to do something similar by crowdsourcing ideas about buillding the future by chatting to lots of interesting people ... and enjoy myself in the process!

I have a fantastic network of passionate people in so many different areas of health and social care and indeed the community - all of us. I started to make a list of possible contributors and I was not short of ideas! And there will be many more people out there who will emerge during the series itself - this is the organic nature of listening and networking.

Thank you Florence for your #JFDI response to my initial call out. I love the way you just dived in and did this and I'm hoping you will be an early guest on my 'Whose Shoes #Wildcard' podcast series!

I am thrilled that my friend Dr Farzana Hussain has agreed to be the first contributor.

This is very exciting. Farzana was named herself in the inaugural list of HSJ wild cards in 2020, as well as being named as 'GP of the year', She has been a fantastic role model, so it feels a bit like passing on the baton.

Farzana is the real deal. I can't think of anyone you would rather have as your GP. She listens and she cares deeply. Common sense, finding imaginative ways to step into the shoes of others, speaking truth to power and truly seeking to understand what makes people tick. I have been in awe of Farzana's innovative work during the Covid pandemic - immediately coming up with virtual consultations, drive-through clinics, proactive calls to understand why her patients might not initially be taking the Covid vaccine... and so much more!

We included some of the early examples in our 'Learning from Covid19′ best practice #VirtualWhoseShoes series in the early months of the pandemic and Farzana also told some of these stories briefly on a video she kindly made for our advent series, dressed as a very glamorous Father / Mother Christmas!

I can't wait to speak to Farzana!

So, I'd love to hear your thoughts and encouragement - and hopefully start to build an audience to do justice to the wonderful speakers I am hoping to attract ...!!

Your help, suggestions and feedback will be very gratefully received.

It has been an exciting time. Out of the blue, I was named as a #WildCard as part of the #HSJ100 2021 👀, alongside some big names like Marcus Rashford, Gareth Southgate, Greta Thunberg and one or two friends, in particular fab Clenton Farquharson MBE.

I am a bit ambivalent about all the different awards, but the idea of being a *wild card* appeals to me! 😀
I had seen that the HSJ had put a call out on Twitter to ask people to name some 'not usual suspects' whom the new NHS CEO should listen to. 👂🏼

Who should the new NHS England chief executive - due to be appointed in the next few weeks - be listening to as they get started?

HSJ wants to highlight people outside the usual health and government hierarchies who the new boss would do well to learn from and listen to.
- Health Service Journal (@HSJnews) June 9, 2021

They should offer a different perspective to those likely to get access. They may be unusually clear thinking, be good at "big systems", or a patient articulating their experience. Could be from another field altogether, or a health leader from overseas who we ought to emulate.
- Health Service Journal (@HSJnews) June 9, 2021

One or two fantastic people recommended me.

Totally agree Gill is exceptional in accelerating co production in healthcare & asking the challenging questions
- Flo W (@FWmaternity) June 9, 2021

Another vote for @WhoseShoes - without question the most innovative, inclusive and impactful person working to create meaningful change.
- ClearDay (@yourclearday) June 9, 2021

Anyway, I think that was the catalyst to be named in #HSJ100, 20 Wild Cards, so thank you very much.

More importantly, I started to think about how to make the maximum impact from this opportunity.

As the creator of 'Whose Shoes', I see myself very much a catalyst for change, bringing in lots of different voices.
So I started to put out a challenge on social media, asking other people what they would like to tell the new CEO of the NHS when he/she is appointed.

I was thrilled when my #MatExp partner-in-crime, Florence Wilcock immediately took up the challenge and produced a special 'Wild Card' episode in her engaging the Obs Pod podcast series.

Flo speaks from the heart, as a highly experienced and caring obstetrician, and it is very powerful.
You can listen to her thoughts here:

There were also some interesting conversations and ideas on Twitter and LinkedIn. So many people have wonderful contributions to make, but don't always have a voice.

I had a 'lemon lightbulb' idea ...

Perhaps I should start a podcast series myself, just chatting to different people.

Just as Flo's podcast has developed into a fantastic bank of material for anyone interested in maternity care, I thought perhaps I could aim to do something similar by crowdsourcing ideas about buillding the future by chatting to lots of interesting people ... and enjoy myself in the process!

I have a fantastic network of passionate people in so many different areas of health and social care and indeed the community - all of us. I started to make a list of possible contributors and I was not short of ideas! And there will be many more people out there who will emerge during the series itself - this is the organic nature of listening and networking.

Thank you Florence for your #JFDI response to my initial call out. I love the way you just dived in and did this and I'm hoping you will be an early guest on my 'Whose Shoes #Wildcard' podcast series!

I am thrilled that my friend Dr Farzana Hussain has agreed to be the first contributor.

This is very exciting. Farzana was named herself in the inaugural list of HSJ wild cards in 2020, as well as being named as 'GP of the year', She has been a fantastic role model, so it feels a bit like passing on the baton.

Farzana is the real deal. I can't think of anyone you would rather have as your GP. She listens and she cares deeply. Common sense, finding imaginative ways to step into the shoes of others, speaking truth to power and truly seeking to understand what makes people tick. I have been in awe of Farzana's innovative work during the Covid pandemic - immediately coming up with virtual consultations, drive-through clinics, proactive calls to understand why her patients might not initially be taking the Covid vaccine... and so much more!

We included some of the early examples in our 'Learning from Covid19′ best practice #VirtualWhoseShoes series in the early months of the pandemic and Farzana also told some of these stories briefly on a video she kindly made for our advent series, dressed as a very glamorous Father / Mother Christmas!

I can't wait to speak to Farzana!

So, I'd love to hear your thoughts and encouragement - and hopefully start to build an audience to do justice to the wonderful speakers I am hoping to attract ...!!

Your help, suggestions and feedback will be very gratefully received.

Twitter - Join the@MatExpBazaar!

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It has been an exciting time. Out of the blue, I was named as a #WildCard as part of the #HSJ100 2021 👀, alongside some big names like Marcus Rashford, Gareth Southgate, Greta Thunberg and one or two friends, in particular fab Clenton Farquharson MBE.

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Episode 4 - Leanne Howlett - Wild Card - Whose Shoes?

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Such an important conversation. Leanne talking about her #PerinatalMentalHealth  problems and how Health Visitors saved her life. Please support her #TurnOffTheTaps campaign.

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Gill Phillips:

So it's so lovely to chat to you, Leanne. I guess you've put the children to bed by now. This is t he reality of MatExp, isn't it?

Leanne Howlett:

It is yes, just By the skin of my teeth

Gill Phillips:

I think you're going to give me good pr actice for when perhaps I do podcasts with Australian guests and so on, so we can do this stuff. So I first met you through a Whose Shoes workshop and we've become friends since, so this is really special. And I've followed your journey as a new mum, some of the struggles, some of the triumphs, fantastic leadership and peer support, and now a career change as well. So you've got so many different hats, but I'm delighted to say that you're our first kind of lived experience Wild Card podcast guest, and also our first #MatExp maternity experience contributor. So tell us a bit more about yourself. Leanne. And what's important to you?

Leanne Howlett:

Thanks Gill. So yeah, so I guess I met Gill at a Whose Shoes conference back in, I can't even think what year it would have been. 2017, would it have been Gill?

Gill Phillips:

Yeah, it's a while ago, it really is? Yeah, something like that.

Leanne Howlett:

And I sort of got into maternity, incidentally, at first I suppose, I had quite an awful traumatic birth with my son. And there were lots of things that could have been done differently. And I think for me, it became very important then to make sure I could be a voice for other parents. I think at the time, I was very aware that I didn't speak up enough for us. And after that I had postnatal depression. I think one of the things that stuck with me quite a lot was I was his mum, and why couldn't I fight for him? Like he needed things at the time, and health care professionals weren't giving us what we needed. And I wasn't a good enough mum to fight for him, and what he needed and I should have been his advocate. And I think it was only a year or two later, I thought, actually no, it's not that way at all. Because I equally needed that support. I was a new mum, I didn't know what I was doing. So for me, it became about then actually helping other new moms, and being an advocate for people that don't have a voice for themselves. And as I said, I had postnatal depression myself and felt quite alone with that. So I became involved in a few things, I suppose all at once. I got involved as a service user on a local, what would have been the MSLC then at a local maternity hospital just to input that way and feedback and try and sort of drive change. I'm never really a complaint sort of person. I'm almost like, yes this happened, but what actually can we learn from it? And what can we do rather than just moaning about everything that sort of went wrong. So I became quite passionate about that and became involved with that. And then also sort of wanted to do more to support parents that had, not just postnatal depression, but I suppose any form of perinatal mental illness. Because again, I felt really alone. When I was unwell, I didn't know what it was. I didn't understand it. Everyone else seemed really happy with their babies. And I felt like I was the only person who was really struggling. And I wanted to create a peer support where parents could come along. And I suppose where because it was driven by sort of lived experience that the barriers that I knew or barriers to me weren't there. They were taken down. And we just have all sorts of things. Now, as a group of parents, and I have parents say, I think it's great that you did that. And I think it's because I can be in their mind because I was that person. So quite recently, I suppose, we did a video when we run sort of a weekly stay 'n play, and we did a video for parents of walking into the centre, from the outside, from the street walking in, what do we go through where you go up the corridor and into the room. And it was just something simple it took about two minutes, I literally did it on my phone and it was nothing spectacular. But parents absolutely loved it and said it made a big difference to them. And for me that was born out of the fact that I hate going to groups. I hate going to groups on my own. I always will only go with a friend. I always like to know where I'm going, where I can park, where I need to go when I get there, because I just hate being out of my depth and being unsure or not knowing where I'm going. So I think I just have these ideas of things that sort of affect you as a parent and bother you as a parent and sort of I think knowing what sort of pre empting what sorts of things parents will struggle with just is a really nice fit. So I became really passionate about that and was running that group and then became more involved with my MSLC, or what was an MVP then, so I actually became the founding chair of our Coventry and Warwickshire MVP and chair that now it's been going for just coming up to two years and still run my little group and by my by my little group By Your Side is now about to open four more groups across Coventry and Warwickshire.

Gill Phillips:

Wow, didn't know that!, Really amazing. Yeah,

Leanne Howlett:

I've got a meeting tomorrow at a children's Ccntre in Bedworth to talk to them about starting there and then we hopefully should have some starting in Rugby, Coventry and Nuneaton as well which will be really nice.

Gill Phillips:

I love those stories and I love you just touching upon the things there but the informality of that video, the fact that it took you like two minutes on your phone, but I can feel that making such a difference and it reminds me of, now see what you think of this, there's a fantastic maternity team down in Cornwall, I work quite closely with them. And Sarah-Jane Pedler, their PMA, whatever that stands for I can't remember, Professional Midwifery Advocate is it yeah, these acronyms that we love, made a, she's a really smiley midwife, and she made a little video herself of putting on her PPE to show that it was still the same person underneath, still smiling. But you know, at the sort of hieight of the pandemic?

Leanne Howlett:

Yeah.

Gill Phillips:

And don't these things make a difference. A video perhaps walking into the reception area of a maternity hospital? You know, this is what it will feel like?

Leanne Howlett:

Yeah, I think it's sometimes, it's only the small gestures isn't it doesn't need to be grand gestures, it just needs to be. It's just sort of thinking, I suppose, about what it is that parents want to see, and for me that's sort of the beauty of coproduction, that is where the real value is, in getting into the minds of service users and seeing what it is they want to see. Because sometimes like, what they like, midwives always want to do great change, want to make great change, and they want to do these great things for parents. But sometimes they'll go to sort of really elaborate measures to do this. And actually, parents didn't need that. They didn't need to worry about doing all of that, like what they needed was maybe quite simple. And it's sort of I suppose, is having those minds come together, isn't it which I think that's what's sort of the beauty of it really.

Gill Phillips:

So something I didn't mention, but which you'll be very familiar of, is through these podcast series, we're hoping to collect kind of lemon light bulb moments or lemon lightbulb ideas. And, you know, we've already got those, like, get in the shoes of the parents and find out what actually matters to them rather than assume, and small things matter. So these are the kind of things that have come through MatExp, and language and so on. I mean, I was thinking how great it is that you're kind of creative, you've got so many different hats, as I say, and I dipped into your blog, and I saw that one thing that really jumped out at me is a quote, an amazing nurse once said to me, that she was holding the hope for me until I was able to hold it for for myself. And that kind of get like goose bump kind of thing in terms of something that somebody has done that's just made such a difference. But it's not something you can write in a manual, is it?

Leanne Howlett:

No, it's not. And it was funny because I said that to her afterwards. So she sent it to my nurse who looked after me after I had Miley, and she was so lovely. And she said it and I sort of took it in but didn't think much of it. And then when I was at my discharge appointment, I mentioned it to her. And she was really surprised that I'd carried it with me and sort of I remembered it and she said it was a mentor had said it to her, so her mentor had mentioned it to her when she was training as a nurse herself. A nd she took it on and used it sometimes but she sort of hadn't realised I don't think sort of the impact of it and how helpful it was. And I did actually work with her because she's left now which is a real shame. But she was obviously a nurse in our local perinatal team. And so we've just had made by a local artist who was linked to us, has just made some postcards with that on as a phrase and some like, like graphic around it. And the idea is we're going to get those printed and then we're going to hand those out to parents. And I can't remember the exact quote in my head what we've gone with, but it's something like that we're holding the hope for them until they can hold it themselves.

Gill Phillips:

These are the things, I mean, you know me quite well now but I just want to share so widely because they're so simple, you know, people seem to go, in the NHS, to such trouble to do the perfect video. And I mean, obviously it's different because we can just throw something together. And the quality standard is basically that somebody finds it useful - that's about it really. But yeah, people overthink things sometimes. And I mean, the other thing I heard there in terms of perhaps a lemon lightbulb, and it links in with other areas of my work which have been quite interesting, is either making or taking or whatever it might be the chance to feed back to people and how valuable that is for the healthcare professionals. So for example, I've done some work with London Ambulance, and you can imagine you know, paramedics or emergency care workers and they see a snapshot of something potentially awful that's happened and then they deliver that person and they've perhaps got quite close to them by chatting in the ambulance or to a family member and then more often than not they never hear what happens as result of it and some of these more imaginative schemes that perhaps link people back in and they get the chance to meet the paramedic or it's these sort of human approaches isn't it that are so important to people, I think, and not just the people with lived experience but the the staff as well, the healthcare professionals.

Leanne Howlett:

Yeah i think it is. I think you're right because I think she's almost said it as like a really offhand comment and then she sort of realised the impact it would have and i don't know i suppose I hope that now wherever she goes on to that actually she sort of takes that with her and remembers how important it was and how much it meant and will it again, sort of knowing the impact it will have.

Gill Phillips:

I guess the other story that really jumped out for me from your story was when you ended up I don't know about reluctantly, no I think reluctantly is the wrong word, but unexpectedly exceeding your own expectations, writing a fantastic poem. That's been really ... you see, you are so self deprecating ... but it has, it's been really quite influential, I think in maternity and #MindNBody, the project that we've done around perinatal mental health. And just that feeling of being a mum and being able to put into words, you know, some of what you felt.

Leanne Howlett:

Yeah, I think that always makes me laugh because even I'm quite impressive. poetry. But I do but yeah, I'm quite impressed with that. I don't think I could ever do it again. I don't know where it came from. I feel like that was probably in the moment, like came together by some sort of miracle.

Gill Phillips:

But it was it was so important. It was called "I'm fine" wasn't it? It explored ... I mean, perhaps we could even include it. I don't know eithere in the notes or in the actual podcast, but it came from that question that we all ask each other all the time. How are you? And it's just part of our culture, isn't it just to say, "How are you?" without necessarily wanting or expecting a full answer. But but then within healthcare services, If that 'how are you?' doesn't feel as if it's really teasing and wanting to listen to you and to find out what's happening ... "I'm fine" - It's just such a, you know, a natural thing to say, but not the real answer.

Leanne Howlett:

Yeah, it's always to me, it always seems like a brush across the surface sort of answer. And I always say to people, when I give talks, that if someone says 'they're fine', they're probably not. Because it's just not the sort of word you would ever say if you are. Yeah, it's just one of those really awkward ones, isn't it? But yeah, and I think it for me, it sort of encompassed that I suppose. Because it is that almost like putting on a bit of a shield, isn't it and hiding from how you're actually feeling and just just keeping a bit of armour on yourself.

Gill Phillips:

And I know, we've talked similarly, and I would be really keen ... I think there are some up in, say, children's centres, my 'Perfect Mother' poem. And it's the same kind of thing, the social media, and how people, we put only the good stuff on social media and the photos of the perfect family and the smiling pictures and it makes other people feel, I think, and obviously you'll speak more about this in terms of feeling lonely, or that you're the only one that things aren't perfect for.

Leanne Howlett:

Yeah, and I think what always resonates with me, and what I always remember is when I was unwell after having my first, I didn't tell anyone that I was struggling because I just didn't really want to, and when I did eventually tell a friend, and it was a friend I've been friends with before we had children, they're literally only three days apart. But we were friends anyway, before we had children just happened to be we had children the same time. And I sort of used to meet her once or twice a week, we'd take the kids out to rhyme time and go for a coffee and do things, so I saw it really regularly. And when I told her, she had absolutely no idea, she was genuinely absolutely gobsmacked that I'd been unwell because she said she would never have guessed in a million years. And she said that when she used to ... she breastfed really successfully her little boy probably until after she went back to work but she said at points when I was sort of there bottle feed I was sort of sat there bottle feed and thinking oh god how awful I can ever breastfeed and then she was sat there thinking I can't believe look at Leanne, she's got it all together like she knows what she's doing and she's you know, she's made a decision she's made a plan to do it and I would sit there she crying to my husband saying 'Leanne's got it all sorted and I can't even do this or that'. And she said I can't believe it, I would never have known, like I just thought you had it all together. And I think it's so strange now to think that actually yeah, like people do give us a craft and it's like we're all in this big conspiracy together to just like make every of them feel rubbish about themselves by pretending that we're okay.

Gill Phillips:

And there's just so many layers to that in a way, the fact that not just people who've perhaps typically met through an antenatal class or something but existing friends you know, people who know each other and then I'm sure you want to be open with each other but until somehow it gets unlocked and then when it does, the opportunity then to compare how it really is it's ... Why do you think that happens? Just because we're expected to be this perfect mother ...?

Leanne Howlett:

I think it is that, the shame of it, isn't it, because society expects everything to be okay, less so now I must say I feel like in the last couple of years, there's been a bit more of a change in society around actually being OK to say. "Do you know what? Being a mum is rubbish at times". It's not always nice. It is stressful, it is a pain, there are so many parts of it which aren't nice. And which we really feel we probably didn't sign up for. But then there are so many moments as well which are just completely amazing. And it's this big journey where you are on this roller coaster of balancing them all. I think it's become more acceptable, almost to be like that now. People like the Mumsy Mums and people like Anna Williamson and you know, people that really are quite open about all that side of parenting. But I think even now, to a certain extent, definitely sort of five years ago when I had my eldest, there was none of that there. So I think there is a need to just sort of just say I'm okay. I'm okay. Because it's actually really ... at what point do you turn around ... I always say, people ask you how you're doing or if you're okay, or if you're managing. But when they ask, It's like you were saying earlier, with the underlying question, they don't actually want you to say, No, I'm really struggling and go into some awful thing about how awful it is for you. So almost to make them feel more comfortable. And just because it's easy for you. It's so much easier to say, yeah, yeah, okay, okay, I'm doing all right. Or you just go along with it. And I think there's no real way. I don't know. Like, even now I say, like, people said, when people used to say to me the first time, all right, how are you? And I said, Okay, if I think back now, what would actually have happened if I said, awful, really awful. Like, they'd probably just like, look to me in a stunned silence, like people aren't equipped to deal with, or ways to deal with these things. I think it's a real societal thing, isn't it? And I don't know. And that's why I suppose I've always been braver, since I've become well, I've always been very vocal and very, very open about the fact that I struggled, because I think actually, once you have one or two people doing that, and then three or four people doing that, and then more and more and more, it's a snowball effect. Before you know it, it's actually quite normal to say, "Actually, I really struggled after having my child or my children and it wasn't easy for me, this is what I found really hard". And it's what opens up those conversations and makes it okay, I suppose to struggle.

Gill Phillips:

And I think you've been really instrumental in that. You and others like you, like you say, the more women who are sort of speaking out and being honest, then the more it is helping others. And I really would like to think that our #MatExp work and the #MindNBody project have helped with this because that's been over the last four or five years. And we found that by putting in scenarios that are real scenarios, it can really unblock things so perhaps for the healthcare professionals too. So they might say well actually, I know there's a problem there but my training just isn't enough that if someone says 'I'm fine' and we can move on with the conversation and perhaps I've got these massive tick boxes of things as a midwife that I've got to ask them about in a short appointment. But if they did say "no", if they opened up and started to say how they really are, you know, I'm worried that I might get myself into saying things that aren't perhaps quite right or unhelpful and then the appointment ends. And I suppose for me now obviously being being older, I'm and I'm a Granny now. It's been fascinating and very important, I think seeing not just perinatal mental health but all sorts of taboo subjects I think sort of coming out of the closet over the last few years because certainly I was brought up "Don't wash your dirty washing in public", you know, you get these phrases that stick with you and, from your parents and so on. So there's a big change, I think in society and I think it's very healthy.

Leanne Howlett:

Yeah, I do this I was literally doing some training with some health visitors. And I said to them, I was almost talking to them and said, it's not always about ... you don't need to worry about saying the wrong thing or the wrong thing because all parents actually want is to listen to them. As long as you can listen. And you're just a nice human being. You will never say the wrong thing but there is a real fear, you're right. People don't want to say the wrong thing. They don't want to make things worse. And I think yeah, I think it's about us all being aware and be reminded I suppose that if we just listen like it is just human nature it comes to us in that time you don't think it will but it does and it's just about listening especially as sort of your your healthcare professionals like that I think parents are very aware that a lot of health care professionals aren't mental health specialists and for me if I think that now with Miley particularly I suppose, my health visitor was great, because she would call like ... I'd have my perinatal team appointment, and obviously, they were really crucial. But they were more around like fixing things, and they had an agenda and we'd have stuff to do and almost homework to do from it. And it would be part of that. And yet my health visitor was just someone who was checking ... "just checking in, how are you doing?" and we just had a bit of a chat and it was just some a bit of luck in ear to listen to and a shoulder to cry on and someone there. Like I didn't expect her to do ... the perinatal team were doing all that side of things. I didn't want that necessarily. I just wanted somebody to be able to talk to who I knew would listen and not judge, and who I felt safe and comfortable chatting to. But you're right, you hear all the time that people just don't feel comfortable, don't know what to say and get worried about saying the wrong thing. I think it's about sort of educating people that it actually doesn't matter. You don't need to say the right thing. Just be a human being.

Gill Phillips:

And you don't always need to say anything. Just listen. And you've touched upon ... trust and relationships and continuity. The fact that you knew that person, so when she turned up at your door, you'd start in a certain place, big time really rather than .... someone whose job it is to come and check on you.

Leanne Howlett:

Yeah, I think it makes a difference. And it does because my health visitor after I had Miley was different to when I had Garrison. So it wasn't even as if people could say, Oh, you had that pre-existing relationship, because I didn't. She was new. But it didn't stop us building up that relationship because of the way she was and the way she came across. And I think that's what matters. But I think, as human beings, like, we want to fix things, massively! Everyone I used to speak to when I was unwell wanted to fix me. And I was thinking, "you can't!". But you don't need that, you don't expect everyone to do that you do just want them to listen. But we are massive over thinkers. I think just as human beings and we, you know, we overthink it, we almost talk ourselves out sometimes of saying things to people, because we don't want to offend them, or we don't want to upset them more.

Gill Phillips:

Or avoid them, you know, the classic kind of 'cross the road because you don't know what to say ...'

Leanne Howlett:

One of our volunteers who works for 'By Yo r Side', she lost her son at 37 weeks, really suddenly. And he said afterwards, after it happened, people crossed he road to avoid her and she s id that was literally the w rst thing they could have d ne. But yet, at the time, they d d it because they thought the were saving her and them from, I suppose awkward conversatio s and not knowing what to say, a d sort of, them thinking 'I'm g nna make you feel worse', so I just will avoid her. And ye she said, like, 'it made me feel even worse', like you don't it again, it's part of th t we all overthink thing , I think, rather than jus going with it and sort of let ing human nature take over.

Gill Phillips:

But I think, you're so right. And it's so obvious, but people, all of us, you know, don't necessarily intuitively think like that. And that's where hopefully, this podcast, this conversation now might make a difference to somebody who's in exactly that position and doesn't cross the road and perhaps is just a bit braver in terms of 'She's my friend, so I'm just gonna go and give her a hug'.

Leanne Howlett:

Yeah, exactly. I think that's what I always love about the Whose Shoes workshops as well, because that similar sort of thing, isn't it, it sort of dares to have those conversations, and say those things that you would never otherwise say to healthcare professionals, or that healthcare professionals would say to parents with you all in the same room, just talking quite openly about things. I think that's what I like about it because it's almost ... you state the facts, you say things as they are .... And I think it just makes the other people in the room think 'Oh, yeah'. And just like that, I can fix this, or I can do this differently, and it will make all the difference.

Gill Phillips:

Oh, thanks. And you know, there's a clever phrase I really need to learn. You know, I work with the Darzi fellows at London Southbank university, I love it. These are healthcare professionals from all sorts of different backgrounds, using Whose Shoes to understand about co production. And Professor Murray Wallace, who helps run the programme reviews our session with the students afterwards. And there's a clever academic phrase, oh what is it? 'Inanimate actor', I think that's right. Inanimate actor, which means it's like the scenarios are perfo rming a function, coming from the middle of the room, and bringing the real issue, the real world into the room, into the session. It's not one of them having to say something. So for example, if I've got a scenario in like, 'Well, it's all very well, as a midwife, I've just worked a 12 hour shift. And I haven't got time for any of this because I haven't even had time to go to the toilet', that just goes, bang to the real place. And perhaps what people are thinking sitting around, rather than if people are bottling up 'Well, this isn't real. My perspective is so and so. And of course we can add scenarios so if we find out that, you know, we want to make it like real and controversial, provocative, because that's how life is. And then hopefully you can have those discussions. And it brings out these taboo subjects or these difficult conversations about staffing levels, rather than just glossing over things, I guess. But it's it's, it's a bit risky. And it's a bit of a can of worms, and I'm very grateful to the hospital trusts and organisations who you can feel that they genuinely want to have co production because they're willing to kind of let the conversation go, where it needs to go and to listen, rather than to just get people to come along to kind of tick

their consultation/ outcome box:

you know, we've engaged with people, tick. It's a very different thing.

Leanne Howlett:

And it is a really different thing. And actually, I did a co production talk to our local LMS board only last week. And one of the things I put in there and I said was actually the fact that it's not just about professionals seeing what parents want. It's about parents learning from professionals too, and that sort of joint learning. And the midwives, they said they really liked that concept. But they haven't thought ... I think a lot of cooperation, sometimes people see it as 'oh, the service users are going to come along and criticise what we've done or what we want to do, and will just want me to make all these changes, but they won't understand what it's like for us and the barriers we face and they will just make us feel bad about all the things we do wrong. And it's not about that and actually there is that real shared learning, and you can learn from each other and it is those different perspectives I think are really important. And often you'll have parents say 'if I've known they hadn't had a break for x number of hours ... they should have had a break. But at the time, all they're seeing is a stressed, flustered midwife who's maybe starting to get a bit snappy because they're tired. And everyone sort of lives in their own little view of it, I suppose. And they don't share that. And then that's how ... where the misunderstandings come from.

Gill Phillips:

It really is. And I know, again, mentioning a name if you like .... Ann Remmers, the clinical lead for maternity and neonatal care down in the south-west, has been an amazing champion of Whose Shoes, and she was coming along to all the different workshops in the region. So I was thinking, 'Oh, how wonderful is that? how supportive!' and she said, Well, no Gill, she said, it's the, it's amazing, it's the one chance I get really just to kind of sit and chat to parents. I mean, she didn't say as equals, but that's what it is really, from both sides. And she said, without it having a label, like a complaint, handling, or a debrief, or a meeting with a kind of specific purpose ... it's just chatting. And she said, some of the small things that come out, you know, we wouldn't normally find out because it's either ... I mean, obviously, there are other types of feedback and 'friends and family' and so on, but people are probably exhausted at that point, and they don't just put the little bits and pieces that

the special people, the health visitor that made that difference. And, if you can get the chance to, in some way, perhaps as an organisatio, feedback to those people as well ... Or perhaps create something, you know, as one of our pledges or one of the innovations around setting up a little system that lets people have that feedback a bit more readily. It's very, I don't know, it's just nice, and it makes people feel good. And then they perhaps do a better job because they feel valued. Yes, it kind of positive circle, I guess.

Leanne Howlett:

Yeah. And I think that's what that to me, that's what I like about Whose Shoes I like the fact that .... I've done a few now, but I genuinely believe you could go and sit in a different Whose Shoes every single week with different people and you would learn new things every single time, it's never the same is it, you've never learned having the same. Even if you got the same parents in the same professionals in a room, you'd never have the same conversation twice, or different cards can lead to different things. And I think that's what it is. It is really rich, because you could sit in hundreds of them and always still learn new things.

Gill Phillips:

You can be a Whose Shoes junkie then ...

Leanne Howlett:

Come to them all ...

Gill Phillips:

But it's right. I mean, you know, if we get the same scenario on a different table, we say to them, you know, 'don't be afraid of like, oh, what did the scenario say again?' Because whatever conversation, it is that you're having, that's the one that needed to happen, because the scenario or the poem is just really a conversation starter, not prescriptive

Leanne Howlett:

Yes. If you go off to something else, it doesn't matter. It's like you said - the important points will come out of it.

Gill Phillips:

So in terms of one or two other things I was thinking that I wanted to promote for you really, I know, some of the work that you've done around peer support has just been extraordinary. And the work that you've done, for example, putting together gift bags for mothers and babies coming out of mother baby units. So yes, just a few words about that. And then we'll come on to your perinatal mental health walk.

Leanne Howlett:

Yeah, so the gift bags ... so it's an idea I hads based around when parents come out of mother ... talking to some parents that have come out of mother and baby units. I mean, I was very lucky, I managed to escape that. So I suppose it was all the things I had to think about when I was considering going into one, because it was definitely something which was quite heavily pushed on me by the team. And I think that, obviously it's the right thing you need to do at the time. But then when you come out of it, you're actually going from what is effectively a 24 hours a day sort of care people around there with you, everything on your lap for you. So having to go it alone in the community, and parents say you come out and you've suddenly got a one year old or a nine month old ... and mums' friendship groups have already been formed by then, everyone's already going about their lives and these nine month old babies, they've been doing for the last nine months, and you're sort of new on the scene all of a sudden. And it can feel really hard. And then sort of other ideas around the fact that there's no memories, you don't have memories. So it's something that really sticks in my head that ... neither of my children really have baby books because I was too unwell at the time. People are filling in baby books to do them. And so I don't know how those nice little mementos that people might have of their baby ... and just

trying to I suppose look at :

when you're unwell, what do you miss out on? How can help give that to parents. So that was sort of the idea around the the mother and baby unit pack so every time a mother is released from a mother and baby unit and discharged back home, we can provide them with a hamper with just a few things to sort of help settle them in. But in COVID, we've actually changed it again. So now we do a COVID wellbeing pack. So now we've broadened out our horizons and what. so now it's almost any parent who might be struggling or feeling isolated or ... if they're particularly struggling in some way ... there are so many ways that obviously mums can struggle particularly ... not that anyone's sort of any more important than the others. But I suppose if professionals think it might benefit a mum for some reason, they can now refer them in for a wellbeing pack. So I think we gave out about 87 over the last year in COVID, before we ran out of money, and then we've restocked the money back up again, I did a bit of a GoFundMe, and also had loads of donations of things, which is driving my husband insane. We've got boxes in the hall, we've got got boxes in the kitchen. And the idea is, that's gonna become a long term thing for us. So whereas originally, it was just a short term COVID thing, we've now decided to open that more regularly. So now be there'll be, we've actually gonna have a referral form and referral link. And if a professional of any sort things a parent will really benefit from this, we will send them one. And it's sort of been extended now to include things like colouring books and pens, and just little things, it's so easy. And I find myself doing it now because now I'm issued a mental health nurse and going out and seeing these people from sort of the other side of it. And you'll say to people, have you thought about doing some colouring, distract yourself with colouring and all this, it's like, that's all good and well, but thought of going out and buying the colouring book and buying crayons if you haven't got motivation, because you're not well, it's really hard. So we tried to sort of give people all the things to sort of look up their own self care which they might need. And so we give them a colouring book crayons, a candle, hand cream, sort of a nice sleep bath, bubble bath type thing, a face mask, I can't even think of all the things we've got in there, a journal and sort of loads of things around that, that we're sort of trying to do to give to parents. And the idea is we'll just start handing them out as regular as and when people want them. And there's a great bunch of people called the Warwickshire Sewing Bees on Facebook, who just sent us hundreds of like bags, little sewing bags, to put the things in and send them out, which was really lovely. So that was something we'll just carry on with. Now a lot of as part of our fundraising, we can include it into our budget, so we will fundraise we'll get more money in and then those bags will be covered for another year. And the idea I suppose we could just keep doing that. Because I suppose I don't it's not just about paeer support for me, it's about literally what do we need to do to make parents' lives easier, having to go through mental illness when you've got a baby, it's just so tough, and it's like anything we can do, I suppose to make it easier for them, then I want to do it.

Gill Phillips:

So I don't think you've got any idea Leanne how many different things you've touched on there, like really big things. And you know, to come back to that conclusion, which I think is amazing 'to make parents' lives easier'. But all of those things that feed into that so you've just briefly touched upon involving charities or involving the communities you know, contributing ... it gives other people a purpose as well because sometimes it's a bit like clapping the NHS ... You know, I'm not very interested in clapping the NHS, I want to know what I can actually do that, that helps people. So for example, Joan Pons, LaPlana who's going to be speaking as another podcast guest soon, raises money for Cavell Trust, which is a trust to help nurses in hardship. I'd rather support that.

Leanne Howlett:

I nominated my nurse for a Cavell award, the perinatal nurse who looked after me after having Miley and she got it as well.

Gill Phillips:

So all these stories ... so you might end up speaking to Joan. So, obviously I'm building the podcast and totally making it up as I go along. but I was aware that you've got your perinatal mental health walk, and I was able to help your previous one 2 years ago, and then the virtual walk that we did in the lockdown a year ago, and it's going to be on the 3rd of October. So I think to put your podcast out on the 3rd October will be pretty special.

Leanne Howlett:

Yeah, it'd be nice. Definitely. Yeah, I'm so glad we can finally hold it, to be honest, and I'm not sure what it's gonna look like, I don't think it's gonna be as polished and as good as 2019 one, it's sort of now or never in a way cos we're in October, it's an outdoor event. And if we don't hold it, now, it isn't going to happen. So I'm just gonna do it. And it will be what it will be. But it's a celebration for everyone to come together, I suppose in the meantime, and then we'll hold another one in May, for Awareness Week, like we always do.

Gill Phillips:

So I think that's absolutely brilliant. And you know, other things you've touched upon ... GoFundMe, and just growing things organically, you know, dealing with little things like ... er ... the pandemic, and just kind of adjusting. So I think our final kind of 'lemon lightbulb' that I just heard, probably two of them. So #JFDI, polite version 'Just Do It', and celebrate what you're doing, you know ... it comes back to your idea Leanne of not overthinking things that you're just going to do it. It's not perfect. It's not going to be as good as two years ago, but it will be something and something is good, and it will lead to other things. And that's what you do, Leanne.

Leanne Howlett:

Yeah, thank you.

Gill Phillips:

So many things have come up that I now want to ask you all about. You haven't even mentioned you know, you threw away in passing "And now I'm a student mental health nurse". That's a whole extra story. Just so we'll probably have to, to have Part 2. So it's been brilliant talking to you. Thank you for fitting it in after putting your children to bed even though it took longer than we thought and that's life and that's brilliant and that's real. So thank you so much Leanne.

Leanne Howlett:

Thank you Gill.

Gill Phillips:

Okay, speak soon. Bye

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4. Leanne Howlett - our first #MatExp, 'lived experience' guest - Wild Card - Whose Shoes?

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My first #MatExp guest!Huge thanks to busy mum (and so much more!) my friend Leanne Howlett for sharing her experience of perinatal mental health and how she is using it to help others.We are hoping this episode will be influential in raising awar...

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Health Visitors save lives! First 1001 critical days

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Health Visitors save lives! First 1001 critical days

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‎Wild Card - Whose Shoes? on Apple Podcasts

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Important insights into adult learning – clinical and digital education

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Welcome to Wild Card - Whose Shoes! Walking in the shoes of more interesting people 😉 My name is Gill Phillips and I'm the creator of Whose Shoes, a popular approach to coproduction and I am known for having an amazing network. Building on my inclusion in the Health Services Journal 'WILD CARDS', part of #HSJ100, and particularly the shoutout for 'improving care for some of the most vulnerable in society through co-production', I will be chatting to a really diverse group of people, providing a platform for them to speak about their experiences and opinions. If you are interested in the future of healthcare and like to hear what other people think, or perhaps even contribute at some point, 'Whose Shoes Wild Card' is for you! Find me on Twitter @WhoseShoes and @WildCardWS and dive into https://padlet.com/WhoseShoes/overview to find out more! Artwork aided and abetted by Anna Geyer, New Possibilities.

Welcome to Wild Card - Whose Shoes! Walking in the shoes of more interesting people 😉 My name is Gill Phillips and I'm the creator of Whose Shoes, a popular approach to coproduction and I am known for having an amazing network. Building on my inclusion in the Health Services Journal 'WILD CARDS', part of #HSJ100, and particularly the shoutout for 'improving care for some of the most vulnerable in society through co-production', I will be chatting to a really diverse group of people, providing a platform for them to speak about their experiences and opinions. If you are interested in the future of healthcare and like to hear what other people think, or perhaps even contribute at some point, 'Whose Shoes Wild Card' is for you! Find me on Twitter @WhoseShoes and @WildCardWS and dive into https://padlet.com/WhoseShoes/overview to find out more! Artwork aided and abetted by Anna Geyer, New Possibilities.

On being a rebel & finding your tribe

Several lightbulb 🍋moments listening to Joan & Gill talk. I've never thought of myself as a rebel...... just trying to do the best for the families I've cared for. Like Joan, my first 'rebel' moment was 21 years ago, pushing the boundaries where this had never been done before. Gill has a fabulous way of drawing the very essence of care from her podcast friends. A great opportunity for reflection, curiosity & sense of community. Thank you

Fascinating & Challenging

A conversation with Gill & her incredible network will leave you with new insights and brimming with good ideas. I can't wait to follow her podcasting journey & enjoy those precious light bulb moments

Innovative and inspirational

Gill is as innovative as she is inspirational and her thought-provoking work and criticality of thinking is pushing for new ways of imagining and actualising better health and social care. Try the setting the scene episode to get the general picture. I look forward to hearing the interesting conversations with high profile guests in episodes to come.

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‎Wild Card - Whose Shoes? on Apple Podcasts

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‎Welcome to Wild Card - Whose Shoes! Walking in the shoes of more interesting people 😉 My name is Gill Phillips and I'm the creator of Whose Shoes, a popular approach to coproduction and I am known for having an amazing network. Building on my inclusion in the Health Services Journal 'WILD CARDS', p...

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Can’t wait to chat to Rachel Jury, Zainab Garba-Sani, Alex Mancini and more ...

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In the early part of the pandemic, early summer 2020, we ran a series of #VirtualWhoseShoes sessions, sharing innovative best practice during the pandemic and exploring the particular challenges faced by different groups of people. The work was influential and led to a lot of interesting speaker opportunities, as well as helping people ( including us!) realise that we could keep our core business going and enabling us to run adapt our workshops among them online.
You can read the report here: https://fabnhsstuff.net/fab-stuff/the-whose-shoes-phenomenon-a-catalyst-for-change-in-health-and-social-care

Today I have collected some of the most popular ones - using poems to tell the story of the pandemic. I hope you enjoy listening - and possibly even more I can imagine as listening to this episode in a few years time. I wonder what memories it will evoke?

Key lemon lightbulbs include ... 🍋💡🍋

Let's hang onto the best things we discovered during the pandemic

No hierarchy just people.

Teamwork and valuing everybody

The power of community

Cutting through the bureaucracy to make things happen quickly for the benefit of patients

Valuing key workers; realising how we are all connected and interdependent

Being grateful to people who keep us safe and for the risks they are taking

Awareness of deep inequalities and wanting a fairer society

Nature and other simple pleasures

(Missing) getting together in person and having hugs

How much are you still appreciating and determined to hang onto these, for ourselves and for others, as the world opens up?

To learn more about Whose Shoes, please browse Padlet: https://padlet.com/WhoseShoes/overview

Our podcast Padlet: https://padlet.com/WhoseShoes/WildCard

Please subscribe to follow the podcast series here: https://whoseshoes.buzzsprout.com/
And please leave a review!

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5. Pandemic poems - with crowdsourced voices - Wild Card - Whose Shoes?

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In the early part of the pandemic, early summer 2020, we ran a series of #VirtualWhoseShoes sessions, sharing innovative best practice during the pandemic and exploring the particular challenges faced by different groups of people. The work was influential and led to a lot of interesting speake...

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The podcasting journey so far.

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Gill Phillips 00:00

Listen in the box room, listen in the park. Listen in the morning, listen after dark. Listen in the bath, listen in the car, stop and listen, wherever you are. And people are. Lovely to meet Cat Thomas from Community Catalysts, who tweeted to tell me she is indeed listening in the box room. So who would have thought it? We've got to 10 episodes already. So I thought I'd do something a little bit different and stop and reflect on my podcasting journey so far. You get a little whizzy congratulations thing with sparkles from Buzzsprout. It's all rather encouraging. Short version, I'm loving it. There you are, you can stop listening and carry on with your weekend. But if you want to know a bit more, then please stick with me for a bit of a roller coaster ride. Some of it has been harder than I thought. So here you have a podcast about podcasting, the reflections of a newbie. And for a bit of moral support. Here's a lovely reflection from my friend #FabObs Flo. Florence Wilcock, the creator of the awesome 'The Obs Pod', a podcast about all things maternity

Florence Wilcock 01:18

my wonderful friend Gill recently started a podcast, 'Wild Card Whose Shoes'. To celebrate her 10th episode, she's asked me to reflect on what I think she's achieved, and how it's made me feel as a listener. I always knew Gill was an amazing person with an incredible network of fascinating people. The key thing of Wild Card Whose Shoes, for me, has been that reinforcement that there are fantastic people everywhere across the system, in every aspect and every role, who are enthusiastic, want change, and are fighting to get it. Those rebels, those boat rockers, I really feel that Wild Card Whose Shoes has helped refreshed me. It's given me new energy. It's made me realise I am not alone. As someone who wants to improve things. Some of the episodes have really hit me at the core. I think my favourites so far have to be the incredible Joan and his desire to improve and change. And to do it in the face of being told not to do it, and how he tries to win hearts and minds, but in a slightly devious way. And then the latest episode with Rachel Grimaldi of Cardmedic, her idea that for every person you treat, they should feel that they are the only person that you're looking after, that there are no other drains on your time. It's obvious, but it's really given me pause to reflect and think about my own practice. And is that really true? When I have a family sitting in front of me and I'm talking to them? Am I certain that that's how they feel, that they are the only ones, that they have my full attention. And it's even making me think I need to do my own podcast episode on that topic. So congratulations, Gill on reaching episode 10.

Gill Phillips 03:38

Thanks for that, Flo. Congratulations Joan and Rachel for making it into Flo's favourites so far. Flo is my magic mate. So of course, I'm going to be recommending one specific episode of the ObsPod. It's called 'Magic mates'. The episode that we recorded together, talking about how we've used creativity, and other maverick tactics to build the incredible social movement that is #MatExp, maternity experience. I love making connections, friendships and of course, occasionally, magic mates. One super bonus of making this podcast is connecting with lots of new people, both as podcast guests, and particularly listeners. Huge thanks to all of you. Sometimes this is leading to a deeper relationship or just having the chance for real catch up with people that I already know, by being able to chat to them on the podcast, or those conversations where you say "We must catch up". And now we do. I really do know some amazing people. And of course when you invite them to talk about what's important to them. They often open up about aspects of their life and their work, anecdotes and stories that you didn't previously know. And which make you just so proud of them. Really exciting aspect, which I hadn't fully anticipated is that the podcast is serving to connect contributors and listeners to each other. A real Wild Card network is growing. Obviously, a lot of this is online, but it's also translating into real life meetups. Now, I'm very excited to be getting together with a little gang of people doing fantastic work around reducing health inequalities. I came across the ultimate network Weaver in our podcast last week, and things have gone up a gear, Rachel Grimaldi. We've never met in person, but we're now planning a meet up in London with two of our most innovative #FabObs friends. That means fabulous obstetricians - #FabObs is the shortcut that we use on Twitter, who are all doing great work around language, communication and interpreting services. In no time at all #IntentionalCoffee morphed into intentional hot chocolate, and has now become a plan for intentional dinner. We'd better make it happen soon, or we'll be planning an intentional World Tour. Serendipity can also play a part. I couldn't believe it when I realized that Flo and I were both talking about translation in our podcast during the same weekend. And of course, that gives extra opportunities to bounce off each other and spread ideas and conversations further. Rachael is so lovely. She's so passionate. And since we recorded the podcast last weekend, she's been sending me spontaneous little voicemails simply buzzing with ideas and practices that make people's lives better. Rachael'san anaesthetist, and loves taking photos or coming up with other little touches to improve birth experience, in accordance with a woman and her partner's hopes and wishes. As I say, these voicemails were not recorded for the podcast, but I love the energy and the spontaneity so much that I asked Rachael, if I could share a clip or two. And she kindly agreed. I really hope I didn't bounce you into this, Rachael, but I love them so much. You can hear Rachael walking along in the autumn leaves.

Rachael Grimaldi 07:17

Yeah, it's just wonderful. I always take photos for my patients, because I'm like, you don't want to miss you don't want to look back and they didn't get a picture. So I'm always the official photographer doing videos and afterwards when the baby's born and up close pictures of them holding the fingers and mommy and daddy looking at the baby or mommy and mommy or daddy and daddy or, you know, looking at the baby and having those first cuddles cutting the cord, weighing the baby trying to capture all of it. Very doable to be official photographer. And I love it. I love capturing those little moments. Yeah, I think it just really helps make it really personal. I always want to make sure that you know if women have a birth plan, that if they end up coming to theatre that you know other things on that birth plan we can do, like put music on, or I don't know, whatever it might be if they want a doula to be there or something, then we have a doula. It is harder to recreate these things in theatre.

Gill Phillips 08:13

When people get laughing and chatting about possibilities. That's when the magic can happen. I loved hearing Rachael chatting about being imaginative and pushing the boundaries to make care more personalized. And as she says it just fits in so well with our #MatExp maternity experience.

Rachael Grimaldi 08:31

It's just like learning from other people's stories, isn't it? Because sometimes you think, oh, fairy lights in theatre, I wouldn't have thought of that. We should do this as a thing. And I was , Yeah, we should have, some kind of package that you can offer a woman to when she comes into there to say, you know, would you like the calming package where we allow the fairy light garlands and dim the lights and obviously you can't do the with a caesarean because you need to see what you're doing surgically. But if you're doing a trial by forceps or something, you need some lighting, you can dim the lights a bit and get the music on and obviously we can't burn candles, but we can definitely do some gentle lighting and soft music and things. And there are bits of that you can do for C sections as well.

Gill Phillips 09:38

Listening to Rachael talking there, it's really important to make clear that this is not just an idea. Using fairy light garlands in theatre is something that Rachael's actually done and didn't get into trouble for. It's such a wonderful thing to think that instead of the whole birth plan going out of the window, as women so often say, these amazing healthcare professionals are constantly looking for ways to adapt their practice and find safe ways to make the experience as good as it can be. As Maya Angelou said, "People will forget what you said, people will forget what you did, but people will never forget how you made them feel". People will remember that they felt safe and cared for, that someone went the extra mile, stringing up fairy lights on drip stands during the pandemic. We sometimes have strings of lemon lightbulbs at our Whose Shoes workshops. So who knows, perhaps one day someone in theatre will enjoy having those. Perhaps this will be the next thing, like Jenny the Midwife #SkinToSkin challenge or Flo's lithotomy challenge? 'The calming package challenge!' I love it. It will be interesting to see what people think. Please tell us your thoughts and share examples of what's actually happening. As there is so much great work happening around personalising maternity care.

Gill Phillips 10:44

I have two other super networkers coming up. Terri Perrott from Fab Change Day, and Yvonne Newbold, the inspirational author of the Special Parents handbook. It will be interesting to see what new webs of connections we can build from those. If you like our Whose Shoes poems, Terri and the Fab NHS stuff team have invited me to run a 'Wild Card Whose Shoes' poetry tent at the forthcoming Fab NHS Change day. Mr. Whose Shoes' face was a picture when I told him that. I have absolutely no idea what we'll be doing but a few friends have agreed to join me. People from the NHS have written really powerful poems. So I'm really looking forward to it. The event is on the 24th of November, and our tent unzips at 2pm. So you're very welcome to join us. I'll put some details in the programme notes. So I'll chat first about my experience of podcasting and what I've learnt. I might come on to talk about the process a bit more, as several people have asked, "How do you make a podcast?", we'll see. I love working out loud with this podcast series. It's all so new to me. If I say I have a problem, someone will usually jump in and help. Similarly, people seem to enjoy hearing about some of the ups and downs, I don't know. We'll find out in terms of the response to this episode. And whether people would like me to share a few more reflections as I go along with the series. I'm really trying to grow the series in an organic way. As I plan each episode, and try and work out where the series goes. Next, I have the structure of my Whose Shoes board games sitting loosely behind what I'm doing. And so far, we've had a good mix of people with lived experience, healthcare professionals, people doing amazing things in the community, and people in positions of slightly more formal power. And those are the main perspectives and groupings in Whose Shoes -no hierarchy, just people is a central mantra to my work. But I want to include people with positional power and am choosing the ones who really 'get it' and are able and willing to engage with grassroots people. I've almost hooked one or two, but they're being a bit elusive. Watch this space. I'm deliberately not going in any way that specialises in a particular area. Some people are suggesting that we could do more in depth work around this or that, but I'm keen to mix things up. I want to keep it broad and light, counter balancing, difficult or thought provoking topics with something lighter and more entertaining. It's always been my Whose Shoes dream to break down silos and show how everything joins up, or at least should do. How we're all interdependent, as we've learned so painfully during lockdowns and the whole pandemic experience really. The ways in which we're all far more similar than we are different. Our shared humanity comes through strongly in our Whose Shoes workshops, very similar themes come through regardless of whether people are talking about dementia, say or maternity or Children's Services, or whatever it might be. Good communication, dignity, respect, being listened to, basically being treated as a human being with hopes and dreams, and aspirations. Just take a look at some of the graphic records produced by our friends, the wonderful visual recorders from New Possibilities, who capture the conversations at our workshop so authentically. These are the themes that we're exploring and fleshing out through people's stories in this podcast series. Annie and Carrie the graphic artists will make wonderful podcast guests at some point, as they see and hear so much. So many different conversations, and particularly so many different workplace cultures, through the work that we do. We sometimes joke between us that when the CQC or other inspectors come in, everyone's trying to paper over the cracks. Whereas in our sessions, we're aiming to create the conditions for people to feel safe and inspired enough to want to expose those cracks and then work together to fix them. In terms of actually inviting podcast guests and setting up the recordings, and any kind of pre chats that we have, it's been a bit like the Hokey cokey. One guest is lined up. But then life gets in the way people are busy or sick. The dreaded tickly cough gets in the way. I know I had a tickly cough when I recorded the session with Carol Munt. But because squad cast the software that we use, records our voices on two separate channels. I was able to cough while Carol was talking. And the finished result sounds as though the overdose of Pholcodine that I took worked really nicely. Similarly, the podcast recordings come along like buses, in terms of actually arranging dates. Everyone's free at the same time. One thing I've learned is that I only ever want to record one session in a day. They take energy and I find them personally quite draining. Similar really to what I find when I run an actual Whose Shoes workshop. I want to be able to give full attention and energy to each person, including trying to come to the conversation as well prepared andwell informed as I can be. It reminds me of what Rachael Grimaldi was saying about making each person feel genuinely (in her case, she was talking about patients) that they are the only person who matters to you at that time, as Flo picked up and liked so much in the clip that I shared at the beginning. So I think it's ensuring really that both of us, me and the podcast, guests have the time and feel safe to really just chat without any outside pressures. People are also suggesting new people that I can talk to, which is fantastic. But I already have quite a long list. So far, typically, each guest has insisted that I must speak to at least one more person, someone in their network. So at this rate, this series will have that elusive quality, that lovely buzzword ... sustainability. I just need one of my entrepreneurial friends to create an app, which finds one, only one amazing person a week and then pins them down to a fixed time and date. That will work well. As planned recording dates come and go. Things also change fast. I'm really looking forward to speaking to Dr. Alice Ladur. For her PhD at Bournemouth University, Alice used Whose Shoes with men in Uganda to bring about culture change and improve maternal outcomes. As you can imagine, I so want to capture this story. I'm so proud of Alice. But I'm glad that the session was postponed because in the meantime, Alice has won the Vice Chancellor's Award for her work. What a shame it would have been to chat without being able to mention this wonderful achievement. The podcast series is very organic. But sometimes it's good to tie in with external events. Some are planned long in advance. I've already mentioned Fab Change Day, we'll put Terri Porrett's podcast recording out on the actual day 24th of November, to make it topical and to have maximum impact. She's got her team lined up to do some great tweets. But some opportunities pop up at much shorter notice. As many listeners will know, as co-founder of #MqatExp with #FabObs Flo, maternity care is very close to my heart. And there's a #marchwithmidwives now planned for next week, the 21st November, it's springing up all across the country. So I really want to be part of that. Not only attending my local event, but using the voice that I'm creating through this podcast series to help make more people aware of the issues. Now all being well, I have something - someone - very special lined up - someone to chat to me about the issues and pressures, currently facing maternity teams. And we'll put it out next week to coincide with the 'march with midwives' events. But that's come along suddenly, within the last two or three days really. So what about statistics for the podcast series? It's easy to get hung up on statistics. How's each episode doing? How many downloads? Where are the listeners? It's possible to find out all sorts. Who's this cluster in Staffordshire? I blame that Lyse Edwards. ;-) We seem to be doing okay. "I've been following your podcast series" is such a lovely thing to hear. And it's happening quite a bit now. One thing we do seem to be doing particularly well is the geographical spread. It intrigues me: We've got listeners from so many places. I know their locations, but I don't know their faces. Or perhaps I do. Who are you. From ... Finland, New Zealand, Ireland and Australia, Italy in Canada, and dotted around Malaysia, United States Egypt, France and Qatar, Germany, UAE, Greece, Africa, Netherlands, Sweden, Denmark and Romania. Not to mention the dear old UK. My geography is improving. Seeing new places on the map is very moving. I've never been a great one for statistics. I prefer the human stories. But I want to know who the people are who are listening in all these different countries? Are they people I know. Of course, some of them tell me. Some of them are even kind enough to write reviews, which is amazing. But many of them are there as tantalizing snippets of data: listeners in all these countries, with some regulars, it seems. Thank you so much. How are you finding it? I live in wonder all this technology, perhaps it's my age, but I simply can't take it for granted. As a child, I remember when my mum used to found relatives in Australia. And she planned what she was going to say because it cost a pound a minute, and a pound was a lot in those days. The technology is awesome, isn't it? Yvonne Newbold mentioned and reminded me of the starfish story. I won't tell it properly here. But if you Google the starfish story, you'll easily find it. Basically, if you influence one person in a positive way, and Yvonne Newbold influences 1000s of families, then it will all have been worth it. It feels as if the podcast is also a bit self indulgent. But hopefully in a good way, a bit of a legacy for me. I know so many amazing people, here's my chance to bring them together and share their voices, and have a permanent record of it. A bank have amazing resources to draw on in the future. Like a lot of people, I'd love to write a book one day, the Whose Shoes story, or perhaps a MatExp, special with Flo, we'll see. When my children were young, I started a book called 'Life in the slow lane'. Well, it was so slow that I never actually got anywhere with it. Certainly not in terms of getting over the finishing line, or being published. But I still enjoy revisiting it for myself occasionally, capturing those little moments and anecdotes that would otherwise have been long forgotten. I guess I would have done it as a blog these days. I'm finding that a podcast series is similar to that. You don't need all the discipline of writing carefully structured chapters. I'm not very good at discipline. It doesn't really fit with being a Wild Card does it? Or at least that's my excuse. So a podcast series is probably more realistic than writing a book. After all, I haven't even got around to finishing my website that I've been talking about for the last six years or more. I thought I'd better say that before someone else did. You know who you are. And crowdsourcing is definitely what I do. With a little bit of help from my friends and all that. I'd like to say a big thank you to the people who are listening, particularly the growing band of regular listeners. It's so lovely when people come in and tell me they're looking forward to the next episode. And then, if we're also attracting a more specific audience for each episode, according to who the podcast guest is, whether they promote it strongly through their own networks, for example, and of course, depending on what the topic is. But I'd also encourage you to jump around and explore some of the other podcasts beyond the obvious ones for your specialty. For example, I think everyone will really enjoy the Halloween special that I did with children's author, Rachael Wong. I think some NHS leaders would find Rachel's key messages around not being scared of innovation and creativity ... Very Useful Indeed. Or listen to Carol munt for sheer common sense. Cat Thomas tweeted about that episode. "Love this episode. Absolutely no filler. Soooo many powerful insights. Great to hear about positive actions and 'can do' rather than just focusing on the issues". I love it when people recommend other people's podcasts. I've been a bit slow to the party with podcasting. I've always enjoyed a few. I mean, obviously, the ObsPod but now I've discovered this podcast app. I'm like a little squirrel. It's the same mindset really as how I collect and source Whose Shoes scenarios. So now I collect lots of podcasts in my very own podcast wallet. And you can pick each one up listening from where you got to. It's really very clever and simple. I particularly like the podcast which had chats between friends or or people who clearly feel at ease with each other. Flo's just recorded a podcast with Jenny the midwife, a wonderful friend of ours who's been a fearless global leader in promoting skin to skin of mother and new baby, including inoperating theatre after caesarean births. Pippa Kelly's just spoken to Wendy Mitchell on her 'Well, I know now' dementia podcast. The King's Fund podcast has just spoken to Fatima Shah Khan. All podcast guests that I admire greatly as being outspoken, human and very real. Just as I like connecting people, if I hear a good podcast, I want to share it, particularly one that's like mine new and needing a bit of help to get off the ground. Now Yvonne Newbold told me about a fascinating podcast started by Dan, a really interesting and engaging 17 year old, talking about his mental health and other issues during the pandemic. I feel strongly that young people have not had much of a voice during the pandemic. So it's my great pleasure to give a shout out to Dan's podcast. It's called 'The Perception Podcast'. And so far, I've listened to the first couple of episodes. In Episode 2, Dan is joined by his mom, and Sam, his 8-year old brother. And I found it a really compelling insight into a family during lockdown, their family dynamics, a really honest conversation, and in particular, some tips that might help other people. So who can help Dan spread his podcast further? It would mean the world to him. So thank you, Yvonne, for bringing this to my attention. And I'd invite people to please look him up. I love informality on a podcast. I like things that make people laugh. Mr. Whose Shoes was busy listening to an episode of PC- Pro this week, talking about the pros and cons of a one-off payment for software, as opposed to a subscription payment. One of the presenters' cats became the star of the show, meowing loudly in the background, reminding them of the need to keep the cat food subscription up to date. I haven't had our cats on on my podcast yet, but perhaps I'm missing a trick. So as I come towards the end of this episode, I want to give a special shout out to my very first podcast guest my lovely JUST DO IT friend, Dr. Farzana Hussain. Farzana, you got this series off to a perfect start capturing that informal, possibly elusive note that I was looking for: chatty, insightful, passionate, engaging, honest, and oh so human. So what other early outcomes have there been from the podcast series? Each week we collect lemon light bulbs that emerge during our conversations. People have apparently found these incredibly useful. Someone I much admire messaged me, and she said, Gill, give me your inspiration. I'm just finalising a talk for next week that I'm doing for NHS England. One of the things they've asked me to do is look at asking challenging questions back to the system. Any ideas? Well, what a great question. I thought about it. And then I just referred to the lemon lightbulb summaries that are published in the programme notes of each episode. And she she replied, "All the breakdowns are so good, Gill!!!! I love them!!!! So useful!!!!" ... and using up the world's supply of exclamation marks in the process. So I took that as a success. Lots of other ideas are flying around. The most exciting is around linking whole networks, perhaps a festival of ideas, bringing inspirational women together. The theme of women supporting each other is strong. I think back to the Whose Shoes workshop that we did with the Brighton maternity team for International Women's Day, where they displayed this amazing gallery of inspirational women. And to be honest, my mind goes a bit crazy with possibilities. There are possibilities for doing some kind of group podcasts, linking two or more people who've met through the podcast series, and getting them chatting together. I'm feeling more confident to try this now. Now that I've done some of the one to one sessions. How we get reliably in people's diaries is another question. How about a webinar bringing everyone together? A few months - I don't know how long - into the podcast series, contributors and listeners meeting each other online talking to each other No Gill. There's no time to talk about the process of making a podcast or the hard work that goes into even the most basic of edits, producing a description, a transcript, programme notes, chapter headings, little sound bite extracts, and all sorts. I've talked enough. Perhaps another time, or perhaps that's just boring. Let me know what you think. So finally, Amanda Pritchard, Chief Executive of the NHS, I hope you're enjoying the 'Wild Card Whose Shoes' series. Don't forget, I set up this podcast series, especially for you. Perhaps you're one of the listeners flagged up in these tantalizing statistics. But as we know, data only comes alive when we have human stories. And so huge thanks to everyone helping me to tell them here.

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10. Gill's reflections - the story so far - Wild Card - Whose Shoes?

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So, who would have thought it? We've got to 10 episodes already. So I thought I'd do something a little bit different and stop and reflect on my podcasting journey so far.The short version is: 'I'm loving it'!... but it has had its share of excite...

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Coproduction needs to be real, not tokenistic!

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Coproduction needs to be real, not tokenistic!

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Sometimes people with 'positional power' love Whose Shoes until they hate it. Are you really ready to listen to people and find out what matters to them?

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What would I want the new NHS CEO to know about maternity ? A challenge set by Gill after her inclusion on the HSJ Wildcard list

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The HSJ published a list of 20 people the the new NHS CEO should speak to when appointed and my great friend Gill Phillips was amongst them. True to form Gill immediately set me the challenge : what would i want the NHS CEO to know about maternity...

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Humanising birth, humanising health care. Lesley uses her passion, knowledge and experience to point the way forward.

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11. Professor Lesley Page, talking about today’s #MarchWithMidwives - Wild Card - Whose Shoes?

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Today I am talking to Professor Lesley Page, CBE, an internationally respected voice of midwifery!As co-founder of #MatExp, the social movement to improve maternity experience, improving maternity is very close to my heart. It’s well known that...

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Episode 16. Anna Geyer - the art of visual recording

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Episode 16. Anna Geyer - the art of visual recording

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Gill Phillips 00:11

My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to coproduction. I was named as an HSJ 100 Wild Card and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

Gill Phillips 00:45

Today, I'm delighted to talk to the person who helps bring our Whose Shoes events alive and ensures they have lasting impact. Our combined approach to coproduction has been described as magic, it's definitely a case of one and one equals more than two. So I wanted to take the opportunity to kick off the new year by talking to my long term friend and partner in crime Anna Geyer, Director of New Possibilities, looking back at what we've achieved together, and looking forward to what the future might bring. It's always such a fascinating and sometimes unpredictable journey together. Not least with everything we've had to change and develop during the pandemic. I'd like to offer huge congratulations to Anna and her team who are celebrating 20 years of New Possibilities. What a fantastic achievement that is for a micro business. When I first invented the Whose Shoes board game and jumped ship from my day job back in 2008, I never knew that I'd find a partner who would add so much to what I was trying to achieve. Visual recording enables people to hold on to the conversations and ensure they lead to real action and positive change. So let's hear a little bit more about Anna as a person. Welcome Anna, can you tell us a bit more about yourself and what's important to you?

Anna Geyer 02:10

I certainly can do thank you that's... I like being your partner in crime. I like the fact that we've been on a journey together. That's really nice and lovely introduction. So tell me a bit about me. I'm an outdoors person. I love being outdoors and paddleboarding and cold-water swimming at any available opportunity. But we're probably supposed to be talking a bit more about me as a person at work.

Gill Phillips 02:33

It's all part of it, isn't it your paddleboarding? Putting your mum on the back of the paddleboard

Anna Geyer 02:39

and having adventures and not knowing where the journey will take you. So there are parallels. So I do visual, I'm a visual practitioner, is how I would describe myself these days. But like you say New Possibilities is 20 years old. So we came about offering training and facilitation to staff who are working with people with learning disabilities, predominantly. And that is going back to 2001 There was a launch of a white paper called Valuing People. And within that there was a bit about how do you ensure that people with learning disabilities are respected and valued and are encouraged to lead the lives they want to live outside of institutional care. So that's where we came from. And part and parcel of that was doing visual minuting of their meetings. And it was a way of engaging people and making sure that their voices were heard, and gathering different perspectives. So I guess that's what's important to me in the work. Now that's carried right through to today. So being able to represent people voices, is what's important to me. And in order to do that, it's that bit of listening, and really taking care of making sure that you're representing people's voices in a way that supports them to be heard, but also supports people to be able to take some action as a result of hearing it. So yeah, I think that's, that's how I would describe what's important to me.

Gill Phillips 04:15

And that's... I can't actually think when we very first came together, but that was coinciding with my journey at the time working for social care within a council, sometimes using New Possibilities as a provider and getting involved in those sort of events. And definitely when I came to move on and create Whose Shoes, it was exactly around that it was around getting really passionate about personalisation and personalised approaches. And then obviously becoming two small businesses together and creating our story together over it must be about 10 years now. I think.

Anna Geyer 04:50

I think it must be at least 10 years and I do remember, I remember the first time I met you and it was it was in BVSC which is Birmingham Voluntary Service Council. There was a room there. And I think it was Janita that introduced us.

Gill Phillips 05:04

Okay. So Janita was our partnership board lead for learning disabilities at Coventry City Council, where I was working a very passionate, special person.

Anna Geyer 05:14

Yeah. And I think that's what's happened, actually, you know, during our journey is about connecting with people who are passionate about making a difference in various different ways. But you're absolutely right. In your introduction, you talked about the combination of the board game, your board game, which brings people into a room and completely changes the atmosphere and the environment, puts people at ease in order to be able to have some really difficult conversations and really hear what people are experiencing in terms of service delivery, both from a staff perspective, and for people that use the services. So that in combination of creating that great environment for people to have good conversations, and then for the visual minuting, or the visual recording, to capture those conversations, real time, and then feed it back to people is incredibly powerful. You know, there's something that happens, I think, when you spend some time in a room and you have conversations, and you know that they've been really good conversations that you've had, but to have that reflected back to you. And to see it, there is a record so that you can see what's being taken away at the end of that session, one it leaves people feeling that they've been really quite productive, because they can't believe that they've just filled a whole three metre length of paper

Gill Phillips 06:36

and produce an avalanche of post-its for you.

Anna Geyer 06:39

Absolutely an avalanche of post-its of thoughts. So that there's that bit of productivity, wow, have we done all of that? And then there's something about being able to identify their own voice. So the number of people that come up and point at the visual that's been created and say, that's what I said, we said this, that's our conversation, you know, so that bit of validation is really important, isn't it for people, particularly for people who've used services, for them to be able to feel that they've been heard? And I think that's what the visual record does. They can see it makes it tangible. It makes a physical artefact, really I think, that they know that they've been heard, and they can see it, and then, you know, it then takes on its own life, doesn't it? Really?

Gill Phillips 07:26

Yeah, it really does. And I think we talked together about creating the conditions for these conversations. And I suppose, you know, we can be a bit naughty together can't we in terms of you must come along, you must have open, honest conversations now because we need it for the CQC. It's not how it works, is it and people can tell if you actually value them. I mean, some of the work we've done, I remember a really early workshop with a domiciliary care provider, who had never met their actual clients, a small company, who were keen to actually meet the clients and the work that went on behind the scenes, not just to invite people, but to nurture them, to encourage them to, to offer transport, to set it up in conjunction with a little gardening display to make it really fun and enjoyable for people so that they want to be part of it, and they feel their voices are valued. That's an experience, isn't it? I think that's the word I'm looking for. Because when we were talking before, Anna, I realised the challenge of our podcast is people say to me, what's Whose Shoes? Well, it's a highly visual, it's an experiential thing, really. And obviously, the visual recording by definition, all the more so. So to try and describe something as an audio is quite a challenge, really. And we say to people to come along to an event and actually experience it in practice, and then they get it.

Anna Geyer 08:48

Yeah, that's right. So I'm just thinking that maybe in my introduction, I should have said something about what is visual minuting, because there'll be lots of people who won't know that won't know what a visual practitioner is. So it might be worth me just trying to explain a bit of that for those people that are thinking, what on earth's all that about then?

Gill Phillips 09:06

That'd be good. Yeah.

Anna Geyer 09:08

So as a visual practitioner, I come to events, usually they're engagement events, where people are having conversations anywhere, really where people are having conversations and trying to work out what needs to change, is a good forum to have a visual practitioner. And so I work with Carrie Lewis, who's an associate that works with me and the two of us will pitch up to events, and will listen to those conversations and capture them in words and images and colour to bring to life, the conversations that are taking place, and that all happens on a large sheet of paper that's three metres in length. And we start with a blank canvas. And by the end of that session, it will be full. I'm talking just even an hour and a half to two hours, and it will be filled with people's comments. and experiences. So that's what my form of visual practice is predominantly about, capturing engagement events. And I think that's the bit that's important to me. It's engagement events that really feed me in terms of being able to do a good job because it's about representing people's voices.

Gill Phillips 10:20

And I think that's what I love about the way you do the recording. It's so authentic, and to literally start with a blank canvas, because sometimes people have got pre-set themes that they think you might want to put as huge words on the blank canvas at the beginning. But although they might have I mean, in the case of the work that we do together, we have scenarios and poems, and it's very much within the design of Whose Shoes that people choose the actual scenarios and poems to some extent that are relevant to what their event is about and what they're hoping to achieve. But it doesn't necessarily mean, and it shouldn't mean, that all the conversations are around those set topics, the conversations need to be around what people need to talk about. And that's the genuine coproduction.

Anna Geyer 11:04

That's it, absolutely. And I think that that's fascinating, because you're right, you know, there will be conversations about so what should the focus of this workshop be? And let's think about the cards that might help those conversations to happen. But what you know is that when people step into the room, it doesn't matter what the scenarios are, if they have something that they need to tell you, they'll find a way of weaving it into whatever card is turned. If they've got something that they need you to hear. They'll say it, regardless of whether or not it fits into your themed scenarios or not, you know, it's the conversations that need to happen, happen.

Gill Phillips 11:42

And that's what we try and describe to the people running the event, that there's no such thing as going off piste, you know that you don't come back to the scenario and say, oh, hang on a minute, we've gone a bit off track, let's go back to what we're meant to be talking about. It's not meant to be that sort of approach, it's like you say, pulling out the conversations that need to happen.

Anna Geyer 12:01

And so that bit of people trying to say, okay, so we're going to have these themes, so it'd be really great if we could organise the information around these themes. And I know, in my heart of hearts, that with the best intentions, we can try and shoehorn them into those themes. But actually, other themes might come out. And then they're telling you things that are important to people. So it's that voice that kind of comes through, it's the power of that voice that comes through the post-it's that I've learned over the years to be much more fluid and relaxed about actually, the themes that come out will be the things that are important to this group at this time around these tables playing this particular game.

Gill Phillips 12:46

And I think that can be a real challenge to people in terms of real coproduction, because they might have their pre-written draft strategy that they're hoping to use the Whose Shoes event to try out. But it's far better if they get involved in coproduction when they're putting together their strategy and use those conversations to shape what the strategy is going to be.

Anna Geyer 13:07

Absolutely, absolutely.

Gill Phillips 13:10

So I think in terms of when we get involved. And that's the other thing I wanted to reflect on, really Anna, just the different organisations we see, all the different topics, at what stage they're involving us, why they're involving us, how the kind of culture in the room feels, whether people feel able to speak out, whether they're used to speaking altogether, different voices, no hierarchy, just people with all the people who either are or should be involved in their topic. It's fascinating.

Anna Geyer 13:39

It is fascinating. And you know, when it comes to events that we do together, that where people have gone the extra mile and are feeling quite nervous about whether or not this is going to be good that it's usually they've got the right ingredients,

Gill Phillips 13:58

Yes.

Anna Geyer 13:58

because they've put an awful lot of thought and effort and energy into it. And that shines through, right from the buzz that's in the room to the messages that come through, and an openness because, you know, sometimes I'm recording some really hard-hitting experiences that you can't ignore, really important that they're captured. And I always find it interesting hearing some of the stories about where some of these big records are displayed. And I know that one CCG, who had a copy of a visual minute from one of the Whose Shoes workshops, had put it up on the wall outside their office. And it's nice because you know there are times when you keep going back to organisations or like that you say that partnership. So there might be a hospital that's working with the CCG that's working with local providers. So there's a real network of partnership in the way they're working. But anyway, this CCG has their poster up on the wall outside the office and people were stopping and looking at it and wanting to know what it was about. And the one time I went back to this organisation, they said, it's been brilliant because we've been trying to have a conversation with education and children's services for as long as I can remember. But now we've got that record on the wall outside. Somebody from that department was walking along and was interested and asked some questions. And it was the first time we've had a conversation. And I've been trying to have this conversation with them for ages. But this was my opportunity. So there's that kind of impromptu spontaneous conversations that can come out of an event, but also of the record itself, that enables people to continue. So you have great conversations in the room. And then they see the record, out of context. And they're intrigued, and they ask questions, and before they know it, they're sucked into having some really deep and meaningful conversations and thinking, oh, yeah, we need to do something about that. So there's the breadth of people that you can connect with. But then there's also the breadth of subjects that we talk about, for Whose Shoes you've got subjects that range from dementia care, to maternity care, to bereavement support to ... which I mean, it's just, it's huge, isn't it?

Gill Phillips 16:21

It is huge.

Anna Geyer 16:22

Covers all sorts of boundaries there.

Gill Phillips 16:24

And then all the common themes that come through, regardless of the topic that we're talking about, because it's all about people and united by vulnerability, and who is it who doesn't want to be listened to, who is it that doesn't want to feel valued to feel their voices being heard, and the whole thing around, you know, I never wanted to make a complaint, I just wanted to be listened to and for my experience to help somebody else, so that it doesn't happen, whether it's a big thing or a smaller thing. So many... , it is really fascinating, what we discover, I think

Anna Geyer 16:56

That just really wanting to be listened to has just reminded me just looking back again, and I guess my experience and knowing how powerful visual minuting is. So when I worked in the local authority, we were asked to do some person-centred planning, which involved using visual minuting to record the meetings. And often, we were called in when things were getting really difficult. And in one situation, we were called into work with a family who were... the case itself was going through a judicial review. And one of the things that the family said to us while we were going through the process was do you know what, this is the first time we've ever been listened to. Well, in all of our experience, this is the first time people have actually listened to us. And I knew that that wasn't the case, because they'd had a stream of social workers in and out of their door. And it needed to be a new social worker. And then there was another social worker, and this family was badged as being really difficult. But I think that it was more that they hadn't actually felt that they had been heard. And it's that bit of being heard and being listened to, you know, the listening is the making meaning of what you've heard. And I think that when people experience having really being listened to, just can help move things forward. If you can just say, yeah, I understand what you've just told me, I've heard what you've told me, This is what I understand reflecting back to, and that's what we're doing with the visual minute, isn't it? We're, we're listening very carefully. We're not engaging in a conversation. But we're listening, and we're reflecting and making meaning of what it is that is being said and presenting that back to people to demonstrate that they've been heard and listened to. And I guess it's that bit. It's all that bit of magic that happens in visual recording.

Gill Phillips 18:50

And I think it's the combination, that feeling works every which way. So combining it back with the Whose Shoes approach for people to understand different perspectives. So that kind of you can almost see the body language change and that sigh, that relaxation, that you've come together as people and you didn't understand that, you know, perhaps the system that people are working in, and the fact that the midwives, for example, might not have had a break, just understanding different people's struggles. And then working together, that's the coproduction bit, to come up with solutions, and then combine with the pledges for people to realise that it's not about what they must do, that actually they can take individual ownership and responsibility.

Anna Geyer 19:34

Yeah, that's right. And I remember one Whose Shoes event where there were some young mums that had come and they were sitting together, they didn't want to separate themselves out. They weren't happy with the experience that they had. And they said at the end of the session, I really didn't feel that I wanted to be here. You know, there was this group of mums and their babies that were kind of tight together. And you would have expected if they really didn't want to be there that they would have come and done their duty and left as soon as the session had finished. But they hung around and they said, Do you know what? That was just the best experience. You know, I came thinking that I wouldn't have my voice heard and you wouldn't understand. But now I actually understand hearing what staff have to say, I understand. And you could just feel that the wind had been taken out of their sails a bit, you know, they were just like, Oh,right. Okay. I get it. There's more than one perspective here. And actually, I understand more now, why I experienced what I experienced, having listened to somebody else's perspective,

Gill Phillips 20:33

Which you'd never get from something like friends and family where you just write on a piece of paper. And that's it, and it just goes into some kind of box or something and then you may or may not hear what happens. I was going to say what happened as a result. I think in terms of coproduction, the very best people are involving people, right the way through the whole process. So in terms of what the event's about, and certainly the people that come back and do repeat Whose Shoes events, if you like, which I think Lewisham and Greenwich hold the record, I think is it 14?

Anna Geyer 21:05

I don't know. They've done a huge number of events definitely.

Gill Phillips 21:10

And Cornwall with their regular annual events, other people perhaps using it a little bit more creatively as an imbedded approach to quality improvement, it's quite fascinating how people use the tools, and then how big an event it has to be, you know obviously, you can have a small group of people around a board game, and you wouldn't necessarily need or realistically be able to always bring Anna down from Birmingham. But then I was thinking it's funny how thoughts jump around that event that we had with Catherine with just one copy of the board game in Birmingham. Possibly, for me, one of the most powerful, moving events that we've done.

Anna Geyer 21:47

That was incredible, wasn't it? And again, you know, that some such hard-hitting messages that was about people who were falling through the gap, wasn't it? It was Nobody's Patient's materials,

Gill Phillips 22:00

It was.

Anna Geyer 22:00

that you were developing. And hearing people's experience of baby loss and at the different stages throughout pregnancy. Was very emotive isn't it? And, you know, there's a worry that people won't want to open up. But actually, people really value the opportunity to talk about their experience, particularly around childbirth, because it's a lifelong experience, isn't it? You know, it's something that it stays with you. So actually listening to people's experiences where they may have lost a baby or had a really difficult pregnancy and lost their baby during pregnancy. They're hard subjects to talk about and hard subjects to listen to. And so you have this real sense of responsibility of how do I, how do I do this justice? How do I make sure that people's voices are being heard. And if you haven't seen visual minuting, and you have an image of words, and images and colour, you know, you might think that that has a risk of doing disservice to people's voices. So it's not about cartooning or... I think very carefully about the way in which I represent things. And I use a lot of speech bubbles, and use people's words, and use a representation of a person rather than trying to do a caricature. But it feels like it's really important to capture the words that people use themselves to describe something because there's nothing more powerful. I think that quite often what happens when you have a huge volume of content. It's quite easy, when you're typing up that kind of information, to sterilise it.

Gill Phillips 23:51

Yes.

Anna Geyer 23:51

And group things together, and sanitise it

Gill Phillips 23:55

Yeah.

Anna Geyer 23:55

maybe, you know, they're all quite harsh words, aren't they? But there's something about capturing something that's live in the moment, trying to capture the energy and the mood and the emotion that's in the room with that. That is incredibly powerful. And I think I've had people come and ask me to write some things into the graphic that if they haven't seen it there, maybe they haven't felt able to write it down on a post-it note, they might have come up to me afterwards and said, This is my experience. And I've said, so would you like me to write it using those words? And they've said, Yes, that's exactly how I want it to be written.

Gill Phillips 24:32

Yeah.

Anna Geyer 24:33

So I know that being a visual practitioner, I'm in a very powerful position, because I'm the one holding the pens

Gill Phillips 24:38

Yes,

Anna Geyer 24:39

but I really want to be channelling people's voices. And this isn't my voice. I don't change the words. I try to group things together and connect things to give meaning. So that might be about connecting opposites. contradictions in what's being said,

Gill Phillips 24:55

Yes.

Anna Geyer 24:55

or it might be about giving the balance of two different perspectives. But whatever I'm doing, I'm trying to use their language and also trying to feed in some of the energy through the shapes and the imagery that's used, but never getting graphic about stuff... stuff from bereavement loss, dying, serious violence, drug abuse, I'm not going to be depicting. I don't try and draw

Gill Phillips 25:26

Yes, yeah.

Anna Geyer 25:27

things that represent that, it's much more about the words and the, the shape of that, and some of the energy that goes with that, that will capture it, rather than trying to imagine what that looks like in someone's head.

Gill Phillips 25:40

Yeah, yeah. And I think what I find really interesting is how it can uncover things that say, take a very powerful term, Nobody's Patient, it was about people falling through the gaps. Well sometimes the experiences and the way that they're told to us come out in a very negative way. For example, I'm going back to that event in Birmingham, again, that perhaps someone had to go back to work. And they'd had something like spontaneous abortion or medical abortion, that word written on their discharge note, to go back to work, which gives all the wrong impression of their much loved lost, baby. And actually, it was because the doctor had to choose words from a pre-scripted form about what the reason for discharge was, well, who can alter that, and you suddenly get like deeper and deeper into, the doctor wouldn't have wanted to tick that inappropriate box, but that was the only one available. And it just goes like deeper and deeper in terms of well who can make these changes, to make sure that people's experiences are as good as they can be.

Anna Geyer 26:56

And language is just one of those themes that come out time and time again, the language that is used in the medical profession, and how alienating that can be for someone who's experiencing services being described in a particular way, or having had a particular procedure that suggests that it was about their fault, or their blame, or their choice to have something done to them is just as incredible, isn't it? And I think that yeah, if you look back, that's the other thing you mean, you can look back over these records. They're a snapshot in time, aren't there?

Gill Phillips 27:30

Yeah.

Anna Geyer 27:31

You know, you can look back over them and guaranteed around maternity experiences around dementia experiences around the experience of bereavement, that language, language will come out through, you know, the way in which words are used to engage with people, and the impact, the lasting impact, that that leaves for people is massive.

Gill Phillips 27:54

And I think, you know, on a more positive side, if you like, in terms of the impact that we've made in terms of changing that language, you know, that we get these lemon lightbulb moments where someone thinks, Well, I didn't mean it to be heard in that way. I never realised that the words that I learned at medical school, you know, don't have to be the words that I use with the patient, actually it's a person standing in front of me.

Anna Geyer 28:15

Absolutely. And you get that from the pledges. Don't you, you know, all those pledges that come out? And they often say, right, I'm not going to use that language anymore. I'm not going to say you're allowed to do this, or you're not allowed to do that? Because that's not my... I don't have the right to allow you.

Gill Phillips 28:31

Yeah.

Anna Geyer 28:32

And that changes the relationship, doesn't it? So all those kinds of conversations that people have that are around their experience, and often coming back down to the communication and the language, people can do something about that. That's not about resources,

Gill Phillips 28:47

No.

Anna Geyer 28:48

that's about attitudes and behaviours. And I think that that's what people see quite clearly from the records that are produced from a Whose Shoes workshop that it's so much about behaviour, attitudes, language, communication.

Gill Phillips 29:04

And then in terms of what people can do as a result of it. So it might be a pledge, or it might be something like a team challenge. So Leeds, for example, did a language challenge and had a bit of like a swear box if people were using the words that they decided that... it's not somebody external, telling them what to say it's their team, deciding we need to do something about this, and it can even lead to clinicians writing poems, because... it can indeed, because FabObsFlo, so Florence Wilcock, wrote on a train her poem for our mind and body perinatal mental health project, 'Reassured' because she'd suddenly realised that when she explains things to the women who come in front of her and oh, actually that's a problem but medically that's okay, you know, this is how your body works. And then she writes, 'reassured' on her clinical notes, and possibly the woman goes home and says, What the hell was that about, I didn't know what she was talking about, she realised that it's not up to the medical profession to decide I've reassured someone, it's up to that person to decide that isn't it really?

Anna Geyer 30:13

And they're not necessarily going to say, Here, let me just write in your notes that I feel reassured.

Gill Phillips 30:20

But those things, and then that's such a fantastic resource, and then being able to use that, that was written up as a proper poem for our Whose Shoes resources to be able to use that then in a future workshop, and then for someone to perhaps read that and have a reaction that then feeds through to your graphic record from that event and makes people think, that's how the cycle of improvement and impact happens. I think.

Anna Geyer 30:42

But there's not only the visual records that are captured at the end of each event, there's what happens to that. So the number of people that I've spoken to they've said, Oh yeah, I've seen your stuff. It's all over Twitter, isn't it? And I know that you're partly responsible for that, Gill.

Gill Phillips 31:00

I do. I do tweet quite a lot.

Anna Geyer 31:03

But I also think there's something about people just being able to take a snapshot of something that is relevant for them and being able to... so for me, there's something in the value of communicating with a wider audience and finding a way that's kind of dynamic and live and in the moment. And so being able to come up to a record and just take a photo and then tweet that this is what we've been talking about. It works really well for social media, particularly where there's stuff around, you know whether or not people want to have their photos posted all over social media and whether or not they want their comments with their name by it banded around, you know that this was something that I want to be able to say, but I want to say it in a safe environment. And it's similar to the scenarios that you write that give people a voice. So you write a scenario on a card, that gives people a voice, it says what they're wanting to say, but don't have to own it, because it's written on a card. I think the same is true for the visual record, that people can go and take a photo and anonymously say, this is a really important message that came out, it might be their message. But actually it does... they don't need to own it. They can communicate it in a way that gives them anonymity, but allows them to say this is something that's really important and close to my heart.

Gill Phillips 32:27

Yeah, I think that's an aspect of Whose Shoes that a lot of people don't appreciate, really, that all the scenarios are crowdsourced. So they are actually a statement made by a real person in that actual role. And by kind of like starting the conversation with that actual person there. Obviously, they can't argue the point further, but you're hearing first-hand really, what they wanted to say. And you can again, see people just relaxing, we're having a conversation and perhaps a healthcare professional sitting there and thinking, well, this... what's all this about? This isn't even realistic. It doesn't reflect my reality. And then one of the scenarios pretty much says that. One of my clever friends so Murray, Professor Murray at the London Southbank University, calls it a nonhuman actor. So it's as if that person is there, but it's in a safe way with it coming from a board game. And people can perhaps play or get distracted by moving the little shoes or playing with the foam squares and so on. But it's enabling these very, very deep conversations to happen.

Anna Geyer 33:31

Yeah, absolutely. And that's the magic isn't we started off talking about this combination of the game and a visual record is just something that I think it takes coproduction to a different level.

Gill Phillips 33:45

I think it does.

Anna Geyer 33:46

You know, it's, it's much deeper than gathering some people together and having a conversation and having some people write some notes up and engaging people through a process. It's the whole experience, isn't it, of having open and honest conversations, but also having that then captured live, you walk out of the room, and you know what it is that's being taken away from that event.

Gill Phillips 34:09

And I think in terms of us developing our joint virtual offer, one of the reasons that I was initially reluctant was thinking, this is about an experience where people come together, there are hugs, there's cake, there's bunting, it's fun. If we're doing a sensitive event, then we'd have set it up very, very carefully. Possibly a bereavement midwife or a specialist, you know whoever it was there to look after people, a space to go outside during the meeting. So I was scared really taking the approach online to begin with, but we've ended up doing some incredibly sensitive events. And sometimes, obviously, we've all discovered all of us through the pandemic what's possible, but in terms of perhaps couples being able to be there be part of the event with their camera turned off without having to go back and physically get themselves to the place where perhaps they had a very hard experience. And I think the way that you've brought your visual offer online, Anna, with your studio lighting and flipping your camera around and so on has been absolutely extraordinary.

Anna Geyer 35:15

Yeah, absolutely. And I think so it's interesting, isn't it? Because I did both an in the room event, that was the same subject matter that we did online, so that online offline experience, and I think that the in the room event was probably one of the last events that I did before lockdown, and the pandemic,

Gill Phillips 35:36

It was March 2020 wasn't it, I remember,

Anna Geyer 35:39

Think it was actually the last event that I did before lockdown happened. And you're right, you know, there is that experience of being in the room. But that session online. Yeah, people experienced it differently. The outcome of it, you know, with the conversations that took place, and like you say, people were having their own experience there, they didn't have to be contributing, but they could be having a conversation, off camera, off mic, about their experience, and just observing and seeing how that panned out in terms of the session as it ran. But the result in terms of those records, it would be interesting, actually, to have a look at those two records side by side. I think they're both incredibly impactful in their own ways. Because yes, there were conversations that they were having. But we know that the online event has led to some fantastic outcomes for people don't we.

Gill Phillips 36:31

Yeah.

Anna Geyer 36:31

I think the other in the room event, it might be a bit more difficult to judge that because like we say, we hit the pandemic. And so that kind of shut things down in terms of trying to move things forward. But I'm sure that they will have things that have come out of that event, too.

Gill Phillips 36:46

So in terms of different events that we've held, and what the impact has been, what do you think are the ones that we're most proud of? Or just some different examples or some quotes, possibly from people?

Anna Geyer 37:00

So I think the one, the most recent one that we've done together stands out. And that's not just because it was the most recent one, but the one for Demelza.

Gill Phillips 37:10

So we were in a new subject area weren't we, a children's hospice and a face to face event after such a long gap during the pandemic.

Anna Geyer 37:20

Yeah. And the whole thought that had gone into how can we bring people in and create a safe environment as well as a relaxed environment to have some really difficult conversations around children's hospice care. So the room was all set out and well-spaced. You know, everybody was wearing masks, everyone followed the guidance in terms of wearing their masks and being respectful of their proximity to people and all that kind of thing. And anything that might have had an impact on how people were going to engage with it. So the reason that it stands out, I think, was, obviously it was a very emotive subject to be talking about, and lots of emotion was in the room. I know the person that organised it was feeling really nervous about whether or not she'd done enough. And you always know that, like I said earlier, the people that are worrying about how have I done enough, have gone over, above and beyond. And they just need to settle back, relax, and trust the process will be fine when they've put that amount of energy into it. Because the ingredients are all there, aren't they?

Gill Phillips 38:25

Yeah, all the little touches that she'd thought through and just that energy and that attention to detail. Amazing.

Anna Geyer 38:33

Absolutely amazing. And the conversations started, and it was all quite quiet. And I remember her saying to me, oh they're all very quiet, is it going to be okay? And I said, Just give them 10 minutes or so. They just need to settle in. And once they start talking, and there was laughter and there was tears, and there was noise and there was energy in there that was just palpable, really wasn't it?

Gill Phillips 38:56

It really was. Yeah. And then I think when they saw your graphic record, and you always report back, and I think it's an incredible skill, Anna, because you've got to switch, I've realised, that you've got to switch from a mindset of with a pen and post-its and recording to suddenly being able to verbalise what you've done and talk through live, the key points that have come through. So I don't know how you felt reporting that back to them, and then the emotion in the room and the reaction and the ownership.

Anna Geyer 39:24

And I think that that was the bit that stood out to me. One of these events that was a standout event was because when it came to that point of feeding back, I felt this wave of emotion kind of hit me. I mean, I have to say I struggled, being able to keep my voice together just to feed back to the room. I think everybody who stood at the front was met with this, and I really think that there was something about the conversations that they had. I was met with this sea of faces of we've just had really difficult conversations. You've just heard what we've said and you've just fed that back to us. Now we need to get on and do something about this, that kind of energy that was there to make something happen. And people were really appreciative, what they saw recorded on the graphic. And they came in, they had conversations with me, and it was great. I feel when that happens, I really feel part of the process with them. And that bit as I was saying, being a channel for their voice,

Gill Phillips 40:22

Yeah, is huge. And I felt really emotional, managing the pledges and we get people to... there's never any pressure, hopefully, we never like go round the tables and ask someone from each table to tell us their pledge. It's more, is there anyone who's so passionate about what they want to do that they want to share their pledge. And then you hear the most incredible things. I mean, obviously, we've all got, as leaders of the event as facilitators, we've got our own feelings and emotions to handle as well in terms of perhaps any personal experiences. And it was just so incredibly powerful, and you can feel people wanting to do something. And I think what I've found with Whose Shoes is very often, it's the organisations who are already very good. But they're the ones who want to hear from their people. They want to be able to find out extra things that they didn't know that they can improve, and there was that atmosphere there wasn't there.

Anna Geyer 41:17

Yeah, absolutely.

Gill Phillips 41:19

And in terms of unexpected outcomes, I think one of my absolute favourites was... wasn't there a woman in early stages of labour, and she came across, I think it was actually one of Carrie's graphics. And she was so fascinated by looking at that visual record that she said it was acting as pain relief.

Anna Geyer 41:37

So it's actually I think the story was that it was Carrie's friend

Gill Phillips 41:40

Oh, was it?

Anna Geyer 41:41

Yeah so it was Carrie's friend who had said to her while she was in labour, early stages of labour, I saw this record and I think it was one of mine, it might have even been one of the Lewisham hospitals. So she was there. And she saw this record on the wall. And she was just completely drawn into reading everything that was on it, that it took her mind off any kind of labour pains that she was experiencing. Obviously, graphic recording reaches the parts, that other analgesic can't do,

Gill Phillips 42:13

Clearly. So unexpected outcomes.

Anna Geyer 42:16

Unexpected outcomes. Absolutely.

Gill Phillips 42:18

I think one of my other favourites that I quote quite a lot, and the fact that it literally all came from a woman, you know, you think of only healthcare professionals, only senior leaders, people with positional power can make change. So the changes that happened at Liverpool was a direct result of Helen Calvert, a mum who wanted things to improve in various ways, and literally ultimately leading to a successful bid for a new neonatal unit, because they use coproduction and they used your images, Anna, to go back. And I remember, Jo Minford, the fantastic paediatric surgeon who led the work, saying we decided to unite behind those graphic records. And that inevitably, when things get difficult, you're trying to move forward. And people start to argue and say, Well, I think this and I think that, she said we'd all agreed that we'd say, well, it's no longer about what you think or what I think it's about what we said. And they'd go back and they revisited the graphic records, and use those, use that coproduction to think through what people had actually said and make it happen.

Anna Geyer 43:25

It's amazing, isn't it, and you just think it's so powerful, isn't it, and what a result, you know, to have that proposal agreed and to have a new neonatal unit built. And what you could see there were the rationale behind the need to have that Neonatal unit built where it was, was about keeping families together, it was about improving communication, because there were two sites that were involved. And so if you're able to remain on one site and receive the right kind of care and support just in one place, stop that to-ing and fro-ing. So you could see that the rationale behind the need for that neonatal unit to be built was very much about keeping the mother and baby and family together.

Gill Phillips 44:13

Together.

Anna Geyer 44:13

And staff supported to be able to provide the best kind of care. And if they were using the graphic to keep reminding themselves of the fact that that's because those are the voices that were coming through loud and clear. Yeah, that's just brilliant, isn't it?

Gill Phillips 44:27

It's huge. Yeah. And I think just perhaps, to finish, I was thinking of that event that we did for young parents in Birmingham, so again, an innovative event and quite a courageous event around young parents and with the focus on people who've been in care, and using your graphic record. And I think at the end of the event, somebody came up to you, was it, and said, and I wrote down the quote at the time, it would have taken 600 meetings to get to the point that we reached today.

Anna Geyer 44:56

Absolutely. And you're just like, Isn't that brilliant? And so that's the beauty of the Whose Shoes workshop bringing people together because the room was full, wasn't it?

Gill Phillips 45:05

Yeah, it was packed.

Anna Geyer 45:06

The room was full. And they hadn't had that long to organise it. And they didn't have a budget either, did they? But what they made happen in that moment was amazing. And the fact that they've had some feedback immediately from all of the conversations that have been happening in the room through that visual record, that feedback that happens at the end, feeling that and then making their pledges, to leave feeling so accomplished that you've achieved more than you would do in 600 meetings. That's pretty awesome, isn't it?

Gill Phillips 45:42

So one of our lemon light bulbs - meetings are overrated.

Anna Geyer 45:45

That's it? Absolutely.

Gill Phillips 45:50

So hopefully, that's given people a snapshot of what we do together, what we get up to. I think, if I put into the notes for the episode, some links to your website so that people can actually see the graphics and some of the visual stuff that we do, that will explain it a lot better, but hopefully, we've whet people's appetite, Anna.

Anna Geyer 46:09

Let's hope so, yeah. I've really enjoyed talking to you, Gill. It's been great.

Gill Phillips 46:13

And, you know, Anna, we haven't really talked about this being a New Year addition and Janus and looking backwards and forwards. I don't think we've looked forwards at all so perhaps that's another podcast. We'll do that one soon - part 2.

Anna Geyer 46:27

Let's do that!

Gill Phillips 46:28

Okay, that's brilliant. Thanks, Anna.

Anna Geyer 46:30

Thank you, Gill.

Gill Phillips 46:32

I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favourite podcast platform. And please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me and let's hope that together, we can make a difference.

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16. Anna Geyer - the power of visual recording - Wild Card - Whose Shoes?

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Happy New Year to all our listeners!I'm kicking off 2022 by talking to the person who helps bring our Whose Shoes events alive and ensures they have lasting impact. Our combined approach to coproduction has been described as magic. One and one def...

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7. Carol Munt - why we need pirates! - Wild Card - Whose Shoes?

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‘Pirate wisdom’ from one of the HSJ Top 50 Patient Leaders

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Gill Phillips:

Okay, so today, it's my great pleasure to welcome my pirate friend, Carol Munt, one of the HSJ top 50 patient leaders in the country. I'm delighted to speak to you Carol, as I like your common sense approach to quality improvement and health care. Really pragmatic and down to earth, you have so many different hats and lots of fingers in pies. Oh, and it's not everyone who writes a poem about me. So thank you for that. Could you tell us a bit more about yourself? And what's important to you, Carol?

Yes, I will and thank you for asking me to, to sail with you.

Gill Phillips:

In our ship?

Yeah, I won't jump ship, I'll carry on. I got involved, speaking about patients and how being treated by the NHS was affecting them, when my mother was ill. She had dementia and vascular dementia, and I would, I would drive her to play bridge with her friends in the early stages. And when I picked her up, I'd say "how were they?", and she'd say, "Oh so and so's operation's being cancelled and so and so hasn't had physio", and, you know, bemoaning the fact that it appeared to all of these ladies that once you get to be of a certain age, the NHS doesn't care about you anymore. And the irony is that that was six years ago, something like that. I was already involved with the NHS at that stage. But the things that my mum was saying like, you know, it appears that the NHS or the health service doesn't care about people that are older has really come to roost with the fiasco of visiting in care homes. And I suppose the nitty gritty of it is that the health service treats patients, or treats people when they are in hospital, as though they are a condition that needs to be diagnosed and treated, and misses the bigger picture of the fact that patients are people, and we're all different, and a lot of us have got things to offer the NHS. With COVID, it appeared that came to the fore when communities were making scrubs and masks, and people with 3D printers were making face masks for the NHS because, without going into the politics, there wasn't enough equipment around. And so I think a message needs to be taken from this and that is that it's no longer acceptable for there to be a divide between the NHS and the people that the NHS treat. And I'm using the NHS as a blanket term here because the NHS, to me, is all the people that work in a hospital or work in the community. It's the doctors, it's the ambulance drivers. It's everybody involved in somebody's health. And I think we use lots of different words in the NHS, which make it somewhat difficult for people to understand sometimes. There's a terminology 'NHS speak', because some of the words that are used are just much too difficult for the normal person to understand. The acronyms that are used are extremely difficult to the point that sometimes I'm sure even the NHS people don't understand them. So I'm a passionate advocate for co-production or whatever you want to call it. I'm a passionate advocate for patients being involved with staff to actually improve and better the relationship between the two and also to be involved whenever there's a strategic decision being made about patients. The expression 'nothing about me, without me' was marvellous when it came out. But I think we've got a terrible tendency to come up with expressions and to come up with pilot projects and to come up with massive ideas and they run for six months and then they're put on the back boiler. So anyway, that's pretty much where I come from. I, personally, Ive got type one narcolepsy as a result of a serious road accident where I had a fractured skull and a brain haemorrhage and was in a coma for a period of time. And then flying back from France where the accident happened, flown back to the UK and that was when I was 38, so I've had it for a few years now. So I've seen the inside of hospitals and also I'm a qualified nurse, so I've actually seen it from both sides of the fence. That a good enough explanation of me? I mean, there's lots of other words that people use, but some of them probably not repeatable.

Gill Phillips:

I think it gives an insight into you, Carol. And I think I find it fascinating when, I guess the fact that people like to put people in boxes, and you really don't fit in a box, but actually not very many people fit in boxes. But for you, you know, it's obvious if you've been a member of staff and a patient and caring for your mum. You know, I think that's what I meant at the beginning by you've got so many hats, and I think that gives you such a richness in terms of insight.

People fascinate me, I mean, photography is probably my main hobby, and it's photographing people. And, you know, when I travel, it's photographing people from a distance or photographing them at work and all the rest of it. And, and I think having travelled a lot and having seen different cultures, it really brings it home that in the UK we are so fortunate to have an NHS service, a National Health Service. But we're abusing it, if you like, in as much that it's not a national service anymore. It's so fragmented. And people are being set up in competition with each other and hospital financial, Foundation Trusts, rather. See, that's a slip of the tongue but I mean correct. There should be hospital financial trusts, really, because that's basically what it comes down to, competing with each other for business and to be profitable, not the sort of profit that is commercial, but to keep, you know, to keep the hospitals going. And I think I don't like the fact that in some areas, you've got a hospital that's got a fantastic reputation, and they're doing amazing things. And yet, they don't share it with other people. So one end of the country can have a hospital that has got a fantastic record as far as strokes are concerned. And the other end of the country, you can have a hospital that's got an absolutely dismal record as far as stroke is concerned. And that's not a national system. So I really do wish that we could get away from the silos and start sharing information more. And accept that this is a system for patients, it's not a system for the people that run it to use it as a tool if you like. So we've got to be involved far more in decisions that are made about hospitals, about where they're situated, about what time clinics are run. You have clinics, the opthalmic clinic, a good case in point, kids that are being called out of school lessons to go for an opthalmic appointment at 12 o'clock, midday, or two o'clock in the afternoon, when really if the clinics put it down that they would see the children before school or after school, it would stop them being labelled at school, it would save the parents having to take time out of work, and it would be a lot better for all concerned. But that sort of thing isn't going to happen unless somebody says, "actually, can you make it a bit more convenient for me". So ...

Gill Phillips:

I think you're hitting upon so many things. And I think that whole fitting around the person and that's a really good example children's school, you don't want to be disrupting their education. And then you've got the family that sits behind it. So if mums got to, or dad's got to, or whoever it might be, come and collect the child and make a big deal and take them off somewhere else. Whereas if things can happen in schools, and and then I've seen something recently about, let me think what the example was. So children in reception being monitored, you know, they're new in school, so you monitor them for weight and height. Okay, last year, because of COVID, there wasn't much going on in terms of monitoring anything in schools, the children weren't at school, they were home learning. So if you're now in year one, does that mean that you miss out on that check? Or does it mean that you know, they've got to like double the capacity, because theyve got all the new reception children, and some of the people then end up falling through these gaps in the system? I think just following up on some of those things. And the other one, the other thing you mentioned, which I thought was really interesting was the whole question around sharing good practice. And we're both members of the beneficial changes network. And this seems to be a very important and impressive drive already to share things more, but then I think of things now, I don't know what the answer is, but I think of the kind of culture of awards in healthcare. Now, awards could be improving standards, that's good. It encourages people to share good practice, which is good, but you have perhaps a winning team or you know, someone who doesn't put their entry in and how the whole culture of awards makes people feel and whether it actually increases the sense of competition between people. So that's again, like a Whose Shoes perspective in a way exploring some of that? How do we share best practice in this public service? And you mentioned like a hospital at one end of the country or the other end of the country? Sometimes it's quite local, isn't it? .., someone doing some really good practice. And someone up the road could really benefit. Do you think? I mean, what's your experience with that? Do you think that's really improving? Or is it just sort of hype if you like?

Well, it's interesting, what you say about awards. I gave a talk at the King's Fund,, it was about four years ago. And I said, I'm one of health service Journal's top 50 Patient leaders, but I think it should be the top 500 because there's 499 other people out there that have done work that, you know, is equal to what I've done well, not necessarily that - they have done a lot more than I've done and a lot better and I said that, you know, the sad thing is that awards can only you can't give everybody an award. So it's almost like saying, Well, in that case, don't give anybody an award, but just share the stuff that people are doing. And I used to say the NHS is bad at sharing stuff. And now I say the NHS is selfish, because it doesn't share stuff. Because I think if you wanted the best treatment possible, you'd be on your bicycle going around the country knocking on doors all over the place, saying, Oh, can I have my hip down here? And can I have my eyes done there? And, and what have you, and that's not, it's not acceptable. So I don't know how you share? I don't know how you do it. I think there is without doubt a culture that says, Well, we are going to invent it here. And that there are so many wheels being invented in this country that the mind boggles. And of course, every time somebody starts from scratch, there's money wasted, there's time wasted, there's effort wasted, when if they just bothered to see what everybody else was doing, or people bothered to share what they were doing, it would be so much easier and quicker, and improvements could be made with hardly any effort at all. And that, that bugs me, it really does. I was involved in a project about the frontline staff reaction to patient feedback. And it culminated in one of the teams work taking action on the fact that patients had said that the wards were noisy at night. And that that stopped them sleeping. So this team spent quite a lot of effort in finding earplugs, and face masks and, and stuff to go around the lids of bins. So they didn't make a lot of noise and everything and they were so chuffed with themselves that they got this system all together. And then I said yeah, if you'd looked you'd say that St. George's did that four years ago and you could have got all the information from them which would have saved you you know, looking at how much you reckon that this cost you to put it all together. So what is the answer? Should you have to register when you do something good? Or is it just assumed that is part of everyday working? I don't know because people are incredibly proud of what they do and there's some fantastic stuff going on in the NHS and there are people working in the NHS who come up with amazing ideas and somehow or other if I do something good I kind of maybe it's the fact that my father was American and you know the Yanks think differently to us but I think if I do something good or find something good I'm I'm as happy as Larry that I can share it with people so I don't quite understand. I mean I'll share the stuff that you do Gill because I think it's so it's so good and so useful. And I don't understand what it is that stops other people sharing good stuff. I mean, my grandson's just got a first in maths and philosophy and I think my friends are probably bored rigid with me saying Yeah, he's got a first . He rang me up and said he'd got a Damian and I said What's that? And of course a Damian Hurst, a first, keep up Granny!

Gill Phillips:

Keep up granny!!

Yeah, wake up. Yeah, I've only just got used to the bit about oh, that's sick. Oh, won't he like it? No, Granny, that's sick. That means he will, now that means, something totally different. And Ive only just got used to the last one. But I been I mean, why? Why is it that there's this reluctance to say that we're good. I think if you've done something good shout about it and let other people have the benefit of the work that you put in and particularly bearing in mind that I'm talking about this in relation to improvements for patients. And sometimes for staff as well. Why are we not sharing it so that patients all over the country can have the same benefit, that floors me,

Gill Phillips:

I think you've touched upon something very interesting there in terms of the human psychology and some of the stuff that we do through Whose Shoes you know, we try. And we come up with booklets of case studies and try and pick things that are readily transferable or very easily adaptable to a different place, and people will like them. But there's also an energy around things that have come from your team. And where so and so does this and then so and so adds to it. And you get that kind of like team spirit. I think, you know, if the examples you've given there in something like noise is not unique to one hospital, you know, patients are there, they're in bed, if they're like me, they don't sleep very well at the best of times, and noisy bins, noisy doors, people with voices, the whole trolleys or whatever it might be, so that would be a very easy one to sort , for someone to look up and see how can we improve noise levels, and it doesn't have to be from scratch. And some of the examples in neonatal units, I've seen a wonderful place where the lighting was just so low, and everything was geared up as this is how it is, that is the norm, very, very, very quiet. And they got like little systems that showed that, hey, the noise levels are getting a little bit high here in a very subtle way. And I don't know if that exists uniquely there, as it was actually in Ireland, or whether it's pretty much everywhere. I mean, obviously, with Whose Shoes, I'm sort of dabbling in so many different subjects, but just try and like put an idea out there. And people might say Oh, yeah, you know, that happens everywhere , sometimes they think it does, but it doesn't. I think people are very quick to say Oh, yes, yes, we do that yeah. Rather than to reach out and pick up subtle improvements somewhere else and keep improving, keep growing really. And of course Carol, there is Fab NHS stuff isn't there?

Fab NHS stuff is unbelievable. I think it started I think it's, gosh, I'm trying to think how many years it's been going. I know we got picked through in the learning together programme in Oxford, we got picked as one of the runners up for their first awards that they handed out. But the way that Roy Linley has organised, it is brilliant. If you've got a really good idea that you put into practice, then you just send it into them. And it's up on their website. And their website gets hit every day by 1000s of people in the health service. So it's a brilliant way of sharing stuff. But over and above it being just on the website, there are annual events and theh fab NHS ambassadors. It's a whole movement about sharing and getting good practice spread to other people. And I suppose really being unselfish. So yeah, fab NHS stuff, look on, look them up, they're there, they're well worth the visit, and basically cover every aspect of things. And whenever I give talks to people, I always mentioned them.

Gill Phillips:

So I'll share a link when I do the the notes from the session. And people can dip into that with us both highly recommending ,

thanks. I know we have Expo or we did have Expo that's the the annual thing where initially it was pretty much suppliers to the NHS that were showing their wares, so to speak. But then it became that the academic health science networks which show what they'd been doing, and over the last few years, it's been that different hospital trusts can actually show the good work that they've been doing. And I do wonder whether or not we need to start thinking about having a national event where each hospital sends a team that shows a new innovation or a new idea or a new concept, and makes it obvious that we come up with this idea. The results were so much better for patients and that means that they were so much better for the staff and you're welcome to follow that take it on from us. I mean the Always events with the different things that they do, that's easily shared. There's a glitch somewhere in the system. People at the frontline are happy to share stuff, people who are working on it are probably happy to share but there's a little glitch somewhere that actually stops it becoming a you know, a national project or national thing to share stuff.

Gill Phillips:

And I think when you see someone doing really good work, so I've banged on I think you in one or two of these episodes already about the work of Professor Becky Malby. During the pandemic, she came up with the 10 Leaps report really, really early in terms of good stuff that was happening community stuff, like you say people jumping in and making PPE and how are we going to hang on to all of this? And I know quite early on she came up with the idea of a festival of ideas. Yeah, so it sounds very, very similar to what you've just suggested. Wouldn't that be amazing just to bring people together just doing good stuff and for other people to be able to think oh, you know, we could do that or we're doing that, and just share everything around. With a spirit of excitement, I think, rather than this kind of, um, the expression you used, you know, we need to invent it here. As you were talking then Carol, I was thinking about a wonderful parent that I've started to work with in the neonatal world, I expect she'll be a podcast guest at some point. And she came up with going along to a meeting, whereby she'd introduced herself as a parent. Now she's also an academic doctor, but she'd introduced herself as a parent. And if I say there were lots of men in suits in the room. Yeah, probably slightly derogatory but true. And they weren't listening. And one of the people there was very supportive of her. Basically rephrased hardly rephrased, basically said, again, what she'd said, she's very articulate woman. And oh, yes, suddenly, we all get it, because it's come through, like the official healthcare channel, rather than the, you know, perhaps overly emotional, you know, the expectations, the stereotype of a parent in the room. And I think people who've got, as you have, that dual or more different perspectives in terms of being a healthcare professional, who's also on the other side of the fence with lived experience, it's hard to argue against, and it's quite an interesting angle, but it shouldn't need to be like that, you know, I think we've all had experiences where I just see people saying, I had no idea what it was like to be on the other side of the fence. So people who know the systems and the theory, know how to navigate the systems or as much as any mortal could do, yet , suddenly, when it's themselves or their relative, or something that's very close to them, you realise what kind of maze it can all be, and things stacked against you.

Well, look at what happened with the Hello, my name is - where you've got a hospital consultant, who suddenly finds herself, a patient diagnosed with terminal cancer, and is in bed in a hospital and realises that the people in the white coats are just coming up and grabbing her arm and saying, I'm just going to take some of your blood and, and she was saying, Well, you know, who are you? And it was almost as if well, you know, doesn't matter who I am, I'm, I'm the technician, that's come to mean, you know, that the the inference is that, you know, well, I'm here to do a job and you're just the patient that I'm doing the job on. And that's, that's kind of started the whole thing about Hello, my name is, you know, introduce yourself, say who you are. The number of times that I get a phone call, or I make a phone call to a hospital for some reason. And I'm saying , you know, right, I'm Carol Munt, I don't know, who are you? Ah, you don't need to know my name. So I say, Well, actually, I'd prefer to know it. Well, we're not allowed to give names out. And I think, Okay, well, that's number one complaint. that I'm going to make and I don't mean, I don't want to be in a position where things are happening. And I think I've got to raise that as an issue because that isn't good enough. It's, I'm very outspoken, obviously, as you as you might have gathered. But there are a lot of people who aren't and the number of times I've said to somebody, how did you get on? And they'll say, well, well, I don't know, really, I couldn't understand what they were talking about. You know, it's a What is that? The joke, I came up with a couple of really bad jokes, and one was the consultant says to the chap in bed, well, I see you've got a DVT. And then the chap says, No, Doc, I watch films on my i-player these days, where you've got to be of a certain age to appreciate that, but I got that. Yeah. But I think that that that is the thing. I mean, all patients are not being treated as people. If you want me to give one message to the new head of the NHS, it's this. Please see us as people and accept that. As I said, the Kings fund were an incredibly wealthy source that you can pick on. I said, I was looking, I'm looking at a room of 200 people who are experts in what they do. But if you guys all went home, and deputised somebody else to come and take your place tomorrow, I'd be looking at another roomful of expertise, it would be a different expertise. I'd probably have bank managers, teachers, cleaners, you know, salesmen, all sorts, but everybody's got something to offer. And when you're thinking about designing something new, then it's worth looking at it from everybody's point of view and not looking at it purely from a clinical point of view. Because some of the projects that have been done purely based on clinicians deciding what was The best for the patient have flopped dismally because actually that's not what was best for the patient so So my message is this please treat us as people because that's what we are.

Gill Phillips:

That's amazing Carol I think you were talking earlier about you know, the the phrase patient leaders and how many people have got something to offer and obviously all those different conditions that people have lived with all that different expertise that they can bring, you don't want to get to a point where you've got representative patients - if their particular condition is x, then they're an expert in themselves and to a large extent an expert in that condition. But if you're talking about, I dont know, eyesight or breast cancer or whatever it is, you want people coproduction needs to be with the people that are actually affected by you know, whatever's going on and they're the ones who have the expertise to bring. Do you think coproduction the NHS are talking about it being default now in the NHS, well that kind of language worries me a bit because you know, default might go with a tick box somewhere but on the other hand, in terms of it being picked up as something very important and starting to be the way we do things around here and how that might evolve naturally. What are your thoughts on that?

Well, I think it's quite interesting that we have to come up with the terminology about coproduction and I mean, the word coproduction is open for debate the word default is open for debate. So what do we do maybe we just say we'll do it together. I mean, that's basically what we're saying that you know, in future we'll work together we'll talk about things and we will actually involving patients who come up with ideas is actually beneficial for the staff as well as for the patients and and I think one of the things that I've been trying to do since I was picked up as a patient leader is do find other people who are equally passionate about the NHS but who perhaps haven't sort of been as ready to bang on doors as I was and so I think there are several opposite really passionate about the NHS really do care about it. But because it it's not a closed door, it's not the Masons I mean, it's not a closed organisation but it does feel like that sometimes and I think we've got NHS people the big drive with the NHS people and sometimes when I try and click in to get in on something for that I'm shut out because I'm not an NHS person or a patient and I'm thinking I don't see how you can't be an NHS person if you're a patient because surely that's what the NHS is all about. So we have to start pushing to be recognised as part of the team because there's an awful lot of energy and an awful lot of expertise out there waiting I mean, simple thing the talk I gave at the Kings fund was picked up by the Open University and then they've been using it on one of their health courses for the last I don't know four years or something. Well, I mean, I am passionate about involvement as you may have gathered so yeah, we're people but users you know and patient I mean yeah, we're patients when we're in bed in a hospital but we do actually get up and put on our Mufti you know, day clothes, and go out into the big bad world and, you know, have jobs and families and, and drive cars or ride horses or you know, or perhaps some will live in a, you know, in a super big house and some will live in really grotty conditions that that should be improved. And without realising that there's more to a patient than just the diagnosis. We're never going to get anywhere because however, the conditions that people have a bolt on by a much wider problem than illness is wise. Why do people have certain illnesses? Why have they got certain conditions? Is it something to do with living conditions, employment, education, what? So if you don't look at a patient as being a person, you ignore all of the things like that, and that, that's pretty crazy, right? Because then I firmly believe that unless you treat patients as people, you can diagnose a condition and you can prescribe a treatment but unless you actually get to know them as a person, you might as well be wasting your time. Yeah.

Gill Phillips:

And I love the themes that are coming through, although it's so early in the podcast series, and the fact that they're coming from different perspectives. So the episode I did with Dr. Farzana Hussain and the frustrations of a GP in terms of trying to help children with asthma but you know, they live in damp conditions, yes, those kind of examples. So I think Carol I think in terms of your messages for the chief executive, we've had some real lemon lightbulbs, I think teamwork, using the expertise of everyone, whether it's patients, whether it's staff, but that the energy and the willingness to actually be part of this is there. And the kind of final message, let's work together. And let's not care whether it's called coproduction or whatever labels we put on things. My acid test is that you can go up to someone in the street, and they would understand Let's work together, the jargon they might not. So let's just go with the the plain English.

I think that's a good idea. And I think maybe that's where pirates came into, you know, the original concept of pirates came into it, because they cut through all the BS, and got down to the basics and realise that everybody on board ship had to be treated equally had to have an equal, equal share of the spoils and had to have an equal share of the food and all the rest of it had to equal living conditions. And I think getting rid of hierarchy and you know, working, let's just all muck in that and work together. And I'm sure that that will have a much better result all round and it will be much better for the staff, let alone the patient. So yeah, I'm all for that.

Gill Phillips:

Okay, well, I'm delighted to be with you in your pirate community. And thank you so much cow. today and onwards and upwards. No boy, bad boy, is it Thanks.

Thank you.

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7. Carol Munt - why we need pirates! - Wild Card - Whose Shoes?

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Today I talk to Carol Munt, one of the HSJ top 50 'patient leaders' in the country.I love Carol's common sense approach to quality improvement in health care. Carol has many different hats, including her own lived experience, looking after her m...

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Episode 9 - Rachael Grimaldi - Cardmedic

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Episode 9 - Rachael Grimaldi - Cardmedic

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Rachael Grimaldi, founder of CardMedic. One of the most effective and #JFDI innovations during the pandemic

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Today I'm talking to Rachael Grimaldi, co-founder of the multi-award-winning CardMedic® and one of the most inspirational movers and shakers I've ever met. CardMedic is a brilliantly simple and unique digital communication tool. Rachael is a mum of three young children, a NHS clinical entrepreneur, and an anaesthetist. She is also a lovely warm, generous human being, always connecting and encouraging others. . And I've loved following her amazing journey since we first became aware of each other's work at the start of the pandemic.

Rachael tweets as @CardMedic
Lemon lightbulbs from Rachael's session 🍋🍋🍋

Make people feel like they are the only patient you are seeing that day - make them feel special!

People remember how you make them feel. Build relationships and trust.

Equality and inclusion matter! Embed them in all we do.

Patients are often scared - recognise this and help them feel at ease

There are so many barriers to good communication in healthcare - simple solutions (even if not perfect) really help

It's all about teamwork! However amazing any individual is, you can't do it alone!

Use social media to build momentum

Network with people with share values. Idea: do a group podcast with the women we have brought together in this episode. In this series?

Personalised care - wonderful example of a man with learning disabilities who loved trainspotting

Treat people like you would treat one of your own family - the Mum test!

Social impact rather than just business goals - use technology for good ... globally!

CardMedic helps address communication barriers for so many different people!

It's good to share best practice!

Imposter syndrome is all too common amongst women!

Great solutions do not have to be complicated - CardMedic is 'brilliantly simple'

Networking! Use #IntentionalCoffee ☕️☕️ (Or hot chocolate!)

Stories - not just statistics. Knowing you are making a difference

Whose Shoes in Uganda - with Dr Alice Ladur! PhD project

Cultural issues - let's reach out to understand

Personalised information (e.g. discharge letters) can have a direct effect on improving health

Stronger together! Let's grow these communities

#JFDI Shout-outs @whosalama @FWmaternity @SunitaS2016 @ptsafetylearn @helenh49 @safetynurse999 @thehilloxford @NHS_CEP @inclusivefruit @Fi_Contextual @emmajaneshah @UHSussex @MassChallenge @SheLovesTechOrg

Rachael featured in our 2020 advent series about good stuff in the pandemic. And so did Dr Farzana Hussain, who was our inaugural guest on this podcast series. I'd love them to link up talking about addressing health inequalities!

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9. Dr. Rachael Grimaldi - co-founder of CardMedic® - Wild Card - Whose Shoes?

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Today I'm talking to Rachael Grimaldi, co-founder of the multi-award-winning CardMedic® and one of the most inspirational movers and shakers I've ever met. CardMedic is a brilliantly simple and unique digital communication tool. Rachael is a mum of three young children, a NHS clinical entreprene...

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Episode 8 - Rachael Wong - Halloween special

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Episode 8 - Rachael Wong - Halloween special

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Don't be scared of innovation and change!

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Gill Phillips:

My name is Gill Phillips and I'm the creator of Whose Shoes, a popular approach to co production. I was named as an #HSJ100 Wild Card, and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you. It's Halloween. And of course, Halloween is scary, and exciting. And for many people, innovation and creativity are scary, too. So it was brillian when my friend Rachael Wong suggested that we link the two and do a special Halloween edition of the podcast. Rachael's a friend from the Cricket Club. She's a truly fascinating person. Every time I meet her, I discover more about her. She's the chair of the Edgbaston Foundation, the official charity of Warwickshire County Cricket Club. She does wonderful community and fundraising work. She's the author of many children's books, including some really innovative work during the pandemic. So it's my great pleasure to have you on the podcast today. Rachael, can you tell us a bit more about yourself? And what's important to you? And should we be scared?

Rachael Wong:

Thanks, Gill. It's lovely to be here. And I think we move quite quickly, don't we? We literally came up with this idea yesterday on Twitter with a bit of to-ing and fro-ing on Twitter. And here we are today recording this interview. So we're still agile, despite all our experience in life, put it that way. So yes, bit more about me as you say, I chair the foundation at Edgbaston, which is very much about the community arm of Warwickshire County Cricket Club, thinking about the wellbeing of our community, social inclusion, and using the resources at Edgbaston for the benefit of it of its community, which is something we're all very passionate about at Edgbaston, so that that takes up quite a bit of time. But also, as you say, I have written seven children's books, mainly about cricket, and about football. So three about football, four about cricket, and trying to get that dialogue between the classroom and the playground. So that children who really enjoy playing sport would also pick up a book if it was about a sport that they enjoyed. And likewise, children who enjoy reading would then be inspired, perhaps by the content of the book, and think oh, I'll go and pick up a cricket bat and and try cricket because I enjoyed that book. So yes, thats me, really.

Gill Phillips:

And I think you are underplaying it, because I didn't know anything about the book that you wrote with the children during the pandemic, - I thought that was amazing.

Rachael Wong:

Yes, now, that was a real experience. And when we talk about creativity and innovation, yes, I've actually got that in my notes to talk about later. But I'll give you a bit of a teaser. It's called Parmo to the rescue. And it was a book that actually started as a series of videos during lockdown on the Facebook page of the literacy trust in Middlesbrough. Middlesborough Reads Facebook page, and we did a story, a story spread over a week in five chapters. And not only did we do it on Facebook, but we did it interactive. So at the end of the day, the children when they had read one chapter could actually make suggestions of what they wanted included in the next chapter the next day. So it was a good job we were in lockdown, because literally I spent all evening and some part of the night redrafting and re-recording the episode for the next day based on what the children had suggested. And when they said things like they walked down the street and met a Brazilian crazy golfer. You're thinking this is a story about a family in lockdown in Middlesbrough. And you know, you're really pushing the boundaries of what I can include in this book. But you know, I've managed to get most of it in, including the Brazilian crazy golfer. So there we are.

Gill Phillips:

Such a wonderful story! And I think that's part of how we've connected and become friends, Rachael, because of that whole crowdsourcing and organic and sort of see what happens, make it up as you go along. So you jumped into my Advent series, I seem to remember you telling that story last year. Yeah, and #JFDI you know, like our conversation leading to this podcast, let's just do it. And that's probably one of our key lemon light bulbs for the session. So we've got various Halloween themes, haven't we, Rachel? Yes, we've got ghosts, I believe. What are the ghosts about?

Rachael Wong:

So yes, ghosts. I thought my theme here was Don't be scared of the ghosts of past failures. So You know, a little bit like the Christmas Carol, you know, you could lie in bed not wanting to do anything because you're being visited by all these ghosts who are saying that didn't work in the past And you know, that was a disaster. And what's the point of doing anything? And I think my point here was don't things that haven't gone well, sometimes, it's actually not even your fault that something hasn't gone well. It's that circumstances were against you, perhaps it was a great project. But it was just the sense of timing wasn't right, or the audience wasn't ready for it. And, you know, my feeling is if you believe in your idea, or your product, to keep going and to look positively and think, Well, why didn't that work last time? What can I learn from it, rather than just being scared by that ghost of of a past failure or something that hasn't worked as well as you wanted it to? So yes, that was my first Halloween theme but don't worry, these aren't really ghosts. It's just somebody in a sheet - actually It's fine. It's fine. Just keep going.

Gill Phillips:

Brilliant. And sometimes they're just imaginary , something that we haven't even done it yet. But we've got that voice, that whatever on our shoulder telling us it's going to fail before it even has a chance. So yeah, we don't want any ghosts, do we Rachael?

No, no. And the other thing I was thinking about when I was thinking around this, there's a lot of people out there in the world. I mean, JK Rowling is the classic example. People who you know, at first they weren't successful, they had their ideas rejected, but they kept being persistent and were resilient. And I think I read the same about the chap who wrote the Squid game which is very popular at the moment the series I read that he had submitte the idea to various studios and production companies, and nobody had taken it up until somebody finally did and now it's a massive success. So there's lots of examples out there about people who haven't been haunted by ghosts of past experiences and have cracked on and been successful.

Gill Phillips:

Fantastic so let's now put on our Halloween costumes, what are we going to do here?

Yes, so Halloween costumes my second theme and was actually inspired by thinking about my own children and the differences between them as people and and how I reacted to them and particularly through their choice of Halloween costumes. So my eldest my daughter had her choice of Halloween costume was always something like the Grim Reaper. Something very scary probably carrying some weapon that involved beheading or garrotting or something like that, because, you know, that is the person that she is. She wants to bowl cricket balls very fast and, and generally be quite scary. Whereas my son is a completely different character. dressed as a pumpkin always for Halloween, you know, he's quite happy to sit with you and have an intellectual conversation about something, loves his food, you know, has a taste for the finer things in life. And so I thought the difference between the Grim Reaper and the pumpkin here, people will choose a different Halloween costume. So what does that tell us about people? Well, people are different. And it would be very boring if everybody came to a Halloween party in the same costume. So let's think about why people do that. And the differences between them and how we react to people - some people, by trying on their Halloween costume and walking in it for a while. What does that tell us about how they're feeling about a particular project, about change, or challenge or innovation, that by actually putting ourselves in their Halloween costume and thinking, Okay, I understand why they're feeling about that. Because from where they're looking at it, you know, I can see that they've got a different viewpoint, and they're worried about x, y, or z, and then being able to sort of understand that, and appreciate the difference in people that, you know, not everybody thinks the same way as I do. And I totally accept that.. So yes, it's being able to work with people, try on their Halloween costume. And thinking about things from their perspective.

Gill Phillips:

And of course, that's a massive link to my work. So Whose Shoes is all about looking at issues from different people's perspectives, and walking in their shoes, and then the magic happens and we'll talk a bit more about magic that can come from that. And the lemon lightbulbs in terms of suddenly realizing that somebody isn't just being awkward, perhaps they're scared, or they've just got a different experience, and we need to listen, really listen, and then together, work out what we can do. So in terms of what we're going to do, I think, Rachael, it's time for us to go on a bit of a trick and treat here.

Yes, definitely. So Trick or treat. Well, my thoughts on this. Well I don't know whether this is the same everywhere but certainly around where we live people are very conscious that some people are not into Halloween at all, and other people love it. So the sort of signal around here is having some sort of pumpkin or light or candle outside your house which symbolizes to the children in the neighborhood. Yes, this is the house to come to for Halloween, please, you know, please visit this house and, and people around here are quite good at sort of spotting the houses with the with the pumpkin outside or the signal to guide their children towards those houses. And so I thought well, in life when we're dealing with change and innovation and challenge, I think well, let's knock on the doors that have a pumpkin outside because those are the people who were probably very willing to work with us. And so we've got the greatest chance of getting somewhere having some success with that. And that brings me on to the next thing which is curtain twitching. So I'm a real believer in curtain twitching in, in business in life in everywhere,

Gill Phillips:

I love the concept of twitching, I really do

Rachael Wong:

You can go to somebody with an idea and they go Well, not really. not for me not the right time. So then you go to somebody else and it works really well. And the first person's like twitching their curtains going, actually that's work quite well with so and so down the road, what actually we'd like to talk to you about that that's that's a good idea. And so it's this concept of curtains twitching, and people seeing something working, whereas they perhaps weren't ready for it before. But then perhaps they look out their window, they see everybody having fun on Halloween and children, you know, having a great time and decided to, you know, next year, put their pumpkin out and join in. So because they twitch their curtains and see that it was a good thing, and they wanted to do it. And I think carrying that on into our everyday lives and to business and the way we work is sometimes quite a positive way to look at things.

Gill Phillips:

And of course, that's where innovation and creativity comes in doesn't it and the permission for adults to have fun as well, not just the children, because that's what unites all of us really. And I think if we can draw people in and be seen to be having some fun, to be seen to be connecting and having this community, it is human to want to be part of that. I was thinking of what you were saying just then with the curtain twitchers and how my work works, I mean it's exactly that - we kind of draw people in. They look and they see what's happening and they want to be part of it. I suppose a bit of a problem for me, a bit of a nightmare on the other side is in terms of perhaps senior people who want to roll something out. And they feel that they want to plant a whole field of pumpkins and scale them up. Before there's any fun or engagement at all. And that doesn't work either. So our approach is very much again a grassroots, draw people in - I love the way you've described it, curtain twitchers will live with me from from now on. And Twitter brings some fantastic curtain twitchers. You know, you get the lurkers on Twitter very appropriately, you know, they're not necessarily tweeting, but they can be watching what you're doing for a long time and then jump in. And that's exciting.

Rachael Wong:

Yeah, definitely.

Gill Phillips:

So we need some equipment. I think now, Rachael, we need some dragons and witches and wands and a bit of magic, those sort of things.

Rachael Wong:

Yes, yes. So So my next thought was around wands and dragons in particular, that are quite recent additions to Halloween and show how Halloween has managed to adapt and develop and add new things, that the idea of Halloween has sort of rolled with contemporary ideas and contemporary programmes and films, for example. So we've added dragons with Game of Thrones, we've added wands and wizards with Harry Potter. So 20-30 years ago, you wouldn't have had either of those things being so mainstream in Halloween, but we've sort of taken what's going on in society. We've sort of run with it and rolled with it and adapted it and kept innovating. And I quite like that idea. And going back to the book I was telling you about Parmo to the rescue that we did in Middlesborough with Middlesborough Reads team, it started off as Facebook videos. And then the lady Ali Potter who's at Middlesborough Reads realised that by putting the text of the story into a booklet during lockdown, she was then able to create a book if you like with spaces for children to make their own illustrations. So while a lot of them weren't getting learning at school, this could be something that could be given to schools and children could read the story. So they were still engaged in literacy. They could also draw their own illustrations and pictures. So they were using their imagination. And so she did that. And she actually then worked together with her colleagues in social services. And Middlesbrough council paid for I think it was 500 copies of this booklet to be produced and given to children specifically who had a social worker. So those children who perhaps were most at risk of not having any education at home, during that time, were given this book, and it was also given to schools as well. So we had a lot of schoolchildren reading this book. And then from there we went well, they're loving illustrating let's have a competition. So from there a month later, suddenly we're having a competition for all the illustrations. We had well over 100 entries. And then we produced actually a proper book in time for Christmas, which then was a bit of a fundraiser for Middlesborough Reads. And obviously, the children had their own illustrations in the book. So the book was entirely illustrated by the children. So not only have the children input to the story, but they'd also done all the illustrations for the book. So that was one thing I'd started as a very simple set of five videos, five chapters in May, on Facebook, and by Christmas, it was a book with all the children's illustrations, and so just really rolling with an idea, not being scared to sort of run with it, pick it up, chuck it about decide what to do with it, and ended up with something that's probably a little bit different from what you started off with. But was brilliant, it was just a great experience for everybody involved,

Gill Phillips:

and how special for those children to have their illustrations in that. But what a fantastic thing for them to have for the future. And the link, obviously, back with the NHS, I saw some of the illustrations that were so lovely in terms of the rainbows and supporting and appreciating the NHS workers.

Yes. And not only that, but also it was very much about lockdown and the life of a family in lockdown. So it was actually as well as that, a historical document for children and written by children, with ideas from children about what it was like for children in lockdown. And I think in years to come, that will be quite powerful for other children to read. This is what it was like for these twins, a boy and a girl aged 11 in lockdown. And that story I think will be quite powerful, almost like a historical document, as well as a hopefully an engaging story for them.

Gill Phillips:

Is is so authentic. And so captured at that that moment in time, I think it's really special.

Rachael Wong:

And I think the voice of children is quite often lost during the pandemic, I did notice that and it must have been very difficult for children to think none of this I can relate to and nobody seems to be looking at this from my perspective. So that was one of the aims of the book as well to give children a voice to talk about their experience during the pandemic and lockdown.

Gill Phillips:

And I think that whole thing of going with the flow and seeing what evolves and using creative methods. That's something we've very much got in common, I think and, you know, I know with our work, I don't know what people think about our lemons and our magic and our fun. We got into Steller Stories. I don't know if you know, Steller Stories, they're a brilliant way of just capturing little bits of text and photos and videos. And I wrote a Steller Story the FUNdamentals of change with fun, and you know, building on lemons, it starts off with the children's experience at Christmas and how they they like fun, but kind of moving on to Don't we all like fun? So it's very much the kind of thread of what we're saying here I think, and Magic Mates. So my magic mate Florence Wilcock, who is my kind of partner in crime on the maternity experience project, she started a podcast, she started to write blogs, we actually did a stellarSteller story for our reports for NHS England. So we've done a big project a formal funded project together called Nobodys Patient. And we knew that as part of the requirement, we had to do a monthly report to NHS England. We did it as a Steller story. And loads of people read them. And nobody told us we couldn't do it as a Steller story. So that's what we did. We could have assumed there was a rule. I think no rules is another key message. Isn't it?

Rachael Wong:

definitely definitely Yes, yes. And I think that brings quite neatly on to the last point which I've just put, my fifth point about Halloween is just terror. So what is the point of Halloween? What is it actually all about? And I think at first glance, you would say well it's about scaring people, and you know, creating a bit of terror and havoc and everything, but underneath that, I think Halloween, all of that is a means to an end. And it is a means by creating some spooky fun of actually connecting with people and spending time with family, friends, having some fun, as you say so fun very much being the theme of it. So actually something quite different from what you think it is initially. And that by being a means to an end, the end game is really important, the outcome is really positive in terms of spending more time with your community, friends in your neighborhood, rather than actually focusing on the scary stuff itself. And, and so I think quite a lot of that is it's the same with change and innovation they are means to an end and the end is always a better outcome. That's what we're obviously working otherwise there's no point in innovating or making change if you're not actually trying to attempting to make things better. So it's that focus on the end game, which is the outcome rather than the process. And again, going back to what you said about bringing people together, I'm always struck when I go somewhere like the British Museum, that when you look through the galleries or things that have survived from 1000s of years ago, a lot of them, you know, apart from the weaponry, but a lot of them are ceremonial bowls, cutlery, jeweller, brooches , they are this essentially party ware from 1000s of years ago. So it shows us that 1000s of years ago, people felt that same need to come together to mark occasions to celebrate, to be together as a community and those are the things that were important enough to build out of materials that would last for 1000s of years. So I do think it's something within us. Definitely that as individuals and communities, we do have that need and that wish to come together. And I think that's great. And I think Halloween is basically just another opportunity to do that.

Gill Phillips:

I agree. And I think that in terms of community and the power of social media, so obviously coming together in person, you know, Halloween, it would be local, it'd be with the family and with your friends. But we're so lucky now to be able to connect with people who've got shared interests through social media through technology. And I know with our work, pretty much anything that people come up with, we ask, we invite people to make pledges as to what they're personally going to do to take individual responsibility, because everybody is passionate about something. And if we can link them with other people who've got that specific shared interest, then it's supportive, and it's fun, and we see them not only coming together for work, but making friendships, because they've got the same thing that they're trying to achieve together. And then they become a little bit bolder, and it all becomes much easier, and they're not so scared.

Rachael Wong:

Definitely, definitely I love social media. And I've made some really good friends through social media. I have my friends who I see in person quite a lot and my friends who I interact with on social media quite a lot. And you know, I feel they're both friends in the same way. We both have a connection if you like with both groups and and I really enjoy that I really enjoy that aspect to my life. We don't nowadays we don't often live very close to the people who are closest to us. And I think it's brilliant that social media has just brought us all closer together, that distance doesn't really matter anymore, does it?

Gill Phillips:

And I think that just brought us full circle Rachael in terms of the agility, the speed with which we came together to put this podcast together, and you tweeting your wonderful Room on the Zoom, which I just thought was off the scale of brilliant

Rachael Wong:

The witch was in lockdown with some gin and her cat and a big box of chocolates that was making her fat. All I want is to fly every day on my broom, being crowded, like this just fills me with gloom Try Zoom, said her friends, come join and have fun, fire up your laptop. Let's get this thing done. She looked on politely and eagerly said, as she pulled the hat firmly down on her head. I am a witch ,as keen as can be, is there room in the Zoom for a witch like me? Yes! cried her friends, fill your glass up with gin, pull up a chair. Let the party begin. Yes, Room on the zoom was was created during lockdown. Again, it was just one afternoon feeling creative. And it was probably my favorite book that I read to the children when they were younger. And suddenly I just had this moment of this connection between room on the broom and room on the zoom and then suddenly decided to work around that and see what I came up with. But yes, aI mean basically I think that was probably just over 24 hours ago that we had that little exchange on Twitter. And now we've just recorded a podcast on it. That's pretty good.

Gill Phillips:

That's pretty good. And I think that sums up what we're trying to say to people. #JFDI. Just do it. Thank you so much, Rachael. It's been brilliant.

Been an absolute pleasure. Thank you Gill

Gill Phillips:

I hope you have enjoyed this episode. If so, please Subscribe now to hear more of these fascinating conversations on your favorite podcast platform. And please leave a review. I tweet as @WhoseShoes, thank you for being on this journey with me. And let's hope that together we can make a difference.

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8. Rachael Wong - Halloween Special - Wild Card - Whose Shoes?

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Children's author, community and charity whizz, fund-raiser and so much more ...Rachael and I hope you enjoy our Halloween Special in which we explore whether creativity and innovation in health care and beyond needs to be .... SCARY!Lots of lemon...

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Linda Soars, Sydney Innovation Centre, commenting on Lesley Page's episode

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Linda Soars, Sydney Innovation Centre, commenting on Lesley Page's episode

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'HSJ Inspirational Woman' helping thousands of families!

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Gill Phillips, Yvonne Newbold

Gill Phillips 00:11
My name is Gill and I'm the creator of Whose Shoes, a popular approach to coproduction. I was named as an HSG 100 Wild Card, and one to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.
So who am I talking to today? It is my enormous pleasure to be talking to my good friend Yvonne Newbold, who very deservedly was awarded an MBE in the Honours list this year. Yvonne and I were both named in the HSJ, top 50 inspirational women back in 2014. We gravitated towards each other, as we were not the usual suspects, we were each doing something a bit different. And we've been good friends since, getting up to various adventures together over the years. I've been in awe of Yvonne. She's the founder of Newbold Hope. And I can't think of a better gift in this life than giving people hope. I won't spoil the story, as Yvonne will tell it herself. But my goodness, what an inspirational woman she is. So, welcome, Yvonne. I'm so thrilled to have you on the podcast series. You are a Wild Card indeed.

Yvonne Newbold 01:40
Thank you, Gill, what a lovely introduction. That's so kind of you. Thank you. And I hope you know that I value our friendship every bit as much as you do. It's been wonderful to watch all the work that you've been doing over the last seven years. Can you imagine it , seven years since 2014. Goodness, wherever does the time go?

Gill Phillips 02:01
I think we probably knew each other a bit before that. Yes. You know, that was The first time we were thrown together in a room together.

Yvonne Newbold 02:06
Absolutely, and meeting in person is, as we all know, after the pandemic, that is even more important isn,t it than just being connected online. So I think both you and I Gill, have a very rich life online as well. You on Twitter, me a little bit on Twitter, but mostly on Facebook. It's absolutely amazing how you can really get to know people. And you can really have meaningful relationships online with people you've never met. And I think that that has come into its own over the pandemic..

Gill Phillips 02:50
Well, I think seeing what you've done Yvonne over the pandemic, and the number of live sessions that you've run ... and not having to run around all over the country ... So take a step back. Tell us a little bit more because some people will know you well and will be Wow, it's Yvonne Newbold can't wait to hear what she's got to say, some people won't. So tell us a little bit more about yourself and what's important to you.

Yvonne Newbold 03:11
All right, of course, yes. So I am fundamentally a mum, I have come into the work that I do entirely from a lived experience perspective. I have three children, they're all now grown ups. I've got Francesca, Toby and Adam. Toby was born with a condition that is so rare, he is still the only person in the world they've identified with that particular condition. And that meant that being his mother, particularly when he was so small, was a very, very lonely place to be. There were no support groups. There were no research teams trying to find out what had caused it or to try and find a cure. There were no consultants who devoted their careers to specializing in what Toby had. By default, I had to become his medical expert because every time he was desperately ill, and we were rushed to hospital. It was a completely new team who had never ever come across the particular group of symptoms that he had as part of his syndrome. Now, Toby was desperately ill for the first six, seven years of his life. It was made incredibly clear by his medical team that he really wasn't expected to survive very long. We were initially prepared that we'd probably lose him before his first Christmas, then we wouldn't make it to his first birthday. Then we were almost discouraged from looking for a school place because they didn't want us to be disappointed. They didn't think he'd last that long. And against all the odds, he's now 27 which is just ... I am so inordinately proud of him. But during those early years, he was so desperately ill, that most of those six, seven years, I calculated about three quarters of his first six or seven years, he and I spent together in hospitals, with him fighting for his life, and me as a resident parent, willing him to take the next breath. We got to the point whereby we nearly lost him more times than I can remember, you know, the number of times, I had called the extended family and got everybody to the bedside. And each time Toby had other ideas and just sort of rallied around and come, back to us. Now, Toby, now he's 27. He lives in an absolutely fantastic care home exactly a mile from our house. So he's very, very close. He's still very much the heart and soul of our family. And he operates intellectually at an equivalent level to say a mainstream 18 month or two year old. So that means that he is really into slapstick. He adores things like Mr. Tumble, he loves Hide and Seek, pin the tail on the donkey, silly songs, action songs, all of those sorts of things. He is hilariously funny. And he's also probably the most persuasive, stubborn, bossiest person I know in the world, even though he's completely non verbal. Now, one of his school teachers once described to me, she said, Yvonne, No, he's not stubborn, what was it she said, she said, he is a highly skilled self advocate. And I think that is a beautiful way of describing Toby. He's also the best pickpocket I've ever met. Because he will have your mobile phone, sniff out mobile phones, he will have it off you because in case YouTube has Mr. Tumble or Tweedy episodes that he hasn't seen before. However, it hasn't always been this rosy and this easy. As his health began to stabilise a little bit. And as he was able to spend more time at home, his behavior went off the scale. When I say it went off the scale, he became very violent, very aggressive, very destructive. We had 10 years of days where I wouldn't know how I would get all three children to bedtime safely. And sometimes I didn't. The only way I could describe those years was sheer terror. And what happens is, I asked them, Toby had a wonderful team, some fantastic people, you know, of course, education, health and social services. A child like Toby needs a huge team to keep things going. And he was so complex. I asked everybody on that team, what can we do? And remember, this behavior started way before the internet, you know, before the Facebook groups or anything like that the only source of information for this sort of thing was from professionals. So I asked everybody, and it drew a blank, no one I talked to, could believe it. Nobody I talked to could understand that the smiley, happy Toby they saw also had this side to his character. Nobody had ever come across anything like it. And there were no services to refer us to. And I was left feeling that I was the only parent in the world who was dealing with this, that it was incredibly rare. I now know that it isn't, but that's how I felt then. And slowly but surely, when you have a child who is behaving in very difficult and dangerous ways, almost always the narrative changes. And it becomes mum's fault. And the years of blame, shame, judgment, being told that it was my fault, being told by so many other people that basically I should do this. I should do that. I should do the other. I was being too soft. I was being too lazy. I wasn't standing up to Toby. Nobody ever told me that this behavior was caused because of anxiety. That information, it sounds ridiculous now, but there was no way I could find that out. I was told that I had to basically parent him incredibly strictly, I was told by loads of people to parent, stricter, harsher, more authoritatively, and I was going up and up and up and up. And all that was happening was he was getting worse and worse and worse and worse. And of course, now I realize that this behavior was due to anxiety. Now anxiety is a funny word. What does it mean? Well, basically, normally, it means that somebody feels incredibly unsafe, they feel terribly frightened. He was confused, he was distressed. He was ... he can't talk, the only way he could communicate to read how unhappy he was, was through his behavior. And I was reading it all all wrong. And as soon as I realized that this behavior wasn't about him being naughty, or nasty, or anything like that, it was a frightened, scared little boy, inside. Then, I altered the way I parented and I, basically, instead of going up and up and up, we're getting harder and stricter and firmer, I went down and down and down and became kinder and more collaborative, and more gentle and more responsive. And the only way I can describe what happened was ... it was like magic. We were at the point where by on Toby's 18th birthday, we got to the point whereby for the first time, he was so happy he was so content, he was so he was just comfortable in his own skin. And he was such wonderful company to be with that we were able to have a party in a church hall for 200 people.

Gill Phillips 11:54
Wow.

Yvonne Newbold 11:54
And the thing is six months beforehand, and it was only six months beforehand he was 17 and a half, we hadn't been able to go out into the community, unless we'd have three adults to keep him and everybody safe. That is how quickly things changed. So the other thing about those years is that when a parent is consistently blamed and judged, something awful happens, that parent starts to absorb it, I've never seen it 1000 times since in my own work, parents absorb it, they start to believe it. And when a parent starts to believe that it's all their fault that their child has been violent, it's a very, very small step then for that parent to start believing that they actually deserve the bruises and the injuries and the black eyes. Because after all, it's all their own fault. And what I'd like to say, part of the work I now do, is to try and reduce the sort of institutional blame where it's just so easy to blame a parent rather than actually keep asking the what's and the whys. So anyway, we got to his 18th birthday. And that day was I was walking on air, it felt that everything comes together. We've been through so much with nearly losing him all those awful years, when he was so desperately in that hospital that then all those years with terribly difficult behavior. And now I realized that all behavior is a form of communication. Things were really good at that party, he was going around hugging people. It was like birthdays Christmases all together. It was like winning the lottery, and the marathon all on the same day. And I was walking on air and I just felt right. Okay, we've got there. We've arrived, our family. Great, wonderful. That was on the Saturday. And we were still euphoric, all the way through until the first Thursday. When completely out of the blue literally five days later, I was diagnosed with bilateral breast cancer.

Gill Phillips 14:10
My goodness, was that the timing Yvonne, I didn't realize that

Yvonne Newbold 14:13
Yes, it was the same week. It was like the universe was thinking, right. Okay. They're happy we better do something about that. It actually felt. I can laugh about that now butthat's how it felt .. , but basically bilateral breast cancer. I had two completely separate, completely different types of cancer, one on each side that were completely unrelated. I basically caught cancer twice, just at the same time, just very, very bad luck. So I had to have chemotherapy, radiotherapy, lots of quite radical surgery, including mastectomy, and, you know , things weren't great for 8-9 months throughout all of this. But we got to the end of the treatment and Malcolm, my other half and I, we booked a restaurant for the evening that we were going to go to the hospital to get the good news that we got through the end of treatment and that everything was okay. Except that didn't happen. There was a different narrative in the room, I knew there was something wrong, because the head of the team, the professor was actually in the room. And I'd never met her before. And she basically told me, the bottom line, the treatment hadn't worked, they've now discovered that my cancer had progressed into my bones, and that the goalposts completely changed, and that my cancer was no longer curable. Because of Toby, I needed to know the bottom line, I needed to know, you know, how long have I got. And because I knew that I was going to have to make some pretty tough decisions about Toby. And they told me that if I was really lucky, and if I stayed on treatment, I might have as long as two years. But I was likely only to have a few months. Well, that day, on the way home, we live quite close to the Royal Marsdon and Sutton. So it's less than a 10 minute drive all the way home. As you can imagine, Malcolm and I were both quite quiet, quite subdued, looked lots to think about. And by the time I got home, I knew what my bucket list was going to be. And there was only one bucket list that meant anything to me. And the only thing I wanted to do was to do whatever I could to make the quality of the next generation of children and their families coming up after us. Toby was now at the next generation, what could I do to improve the quality of lives. And that's basically what I've been doing ever since. Except that they weren't quite correct in the two year prognosis because I'm still here nine and a half years later,

Gill Phillips 17:12
Yay, hooray!

Yvonne Newbold 17:12
I spent the day at the hospital yesterday, having intravenous infusions, I'm still havehaving loads of tablets, my mobility is sort of shot to pieces, I now use a mobility scooter, but I'm still alive. And I'm still absolutely loving it, you know. So anyway...

Gill Phillips 17:31
You are still rocking it Yvonne.

Yvonne Newbold 17:36
So I think I must take after Toby, because you know, he was supposed to die. And he didn't and the same with me, so you know, I'm not complaining. But since then, I've done all sorts of things. But the the work that I think I'm most proud of, is the work I've done to support families who had exactly the same situation that we were in, where they have a child who has a disability or an additional need. And that child due to anxiety is incredibly difficult and dangerous and their behavior ...

Gill Phillips 18:14
If I can just say, I've been watching that journey in awe because honestly, the scale of that in terms of I know we've talked about the starfish story. And if you could help one family, well, that's true, to a large extent, of lots of different things, but to help one family to that extent that you're literally turning round the family from being scared, and you know, with very good reason with violence and so on, to actually having a happy family where people enjoy their lives. And if you could do that, for one family, that would be amazing. So the work that you've done, Yvonne, where you've done that for so many families. So tell us more about that.

Yvonne Newbold 18:52
Okay, thank you. It's been a long journey. And of course, in the early days, when I was sort of trying to do something, the first thing I did was I wrote a book, the Special Parents Handbook. And because that was so successful, I started to be asked to speak at conferences. And, you know, here was I supposed to be doing something really sensible, like taking up knitting and waiting to be put my house in order. And suddenly we're getting these wonderful invitations to go up to Manchester or Leeds or Glasgow or Bristol or the Isle of Wight just to you know, speak on a huge stage to all these people. And then after I've spoken people will come up and say, Look, do you do any training and I didn't then but I soon put training together. And it also just snowballed. It was just incredible. But interestingly, I never really spoke about Toby's behavior. But do you know why? Because I was ashamed. Because I'd been blamed so much, because I didn't want to have to deal with all that. sort of judgment again.

Gill Phillips 20:02
It's a taboo subject. What goes on behind closed doors?

Yvonne Newbold 20:06
Yeah, absolutely. Anyway, I was then invited to take part in a BBC Radio 4 woman's hour broadcast. And I was so excited. I mean, going on woman's hour. That was a bit like, you know, my other half Malcolm being given a call by Gary Lineker saying look, I can't make match of the day, could you present for me instead, it was that sort of, it was like a wow, it was like, Whoo, I'm on woman's hour. And I was like a little kid, I was really, really excited. But they were basically, Jane Garvey is an incredibly talented broadcaster. And she takes us into the studio, the studio, the lights are off, we were encouraged to kick our shoes off and totally relax. And she asked me a question and I had no option but to answer it authentically. and honestly,

Gill Phillips 21:05
Is that how it happened?

Yvonne Newbold 21:06 Yeah, that was the day that it happened. And basically, I found myself talking for the first time openly about Toby's behavior. But in front of 1000s and 1000s of people. Well, we came off air. We were walking back to the car, I turned my phone on. And my phone just kept going ping, ping ping. And, to be honest, I thought it was going to be my dad, because my dad and Toby are each other's favorite people in the whole wide world. I thought my dad was going to be upset that I'd told the truth about Toby, I thought it was going to be you know, yeah, I didn't look at it first. But it was just pinging and pinging. So we got back in the car. And I finally was brave enough and looked at it. And I must have had 40, 50, 60 messages across social media from total strangers. And I started opening them, people saying thank you, and sharing their stories. By the end of that day, I'd had well over 100 By the end of the week, I'd had 300. And they haven't stopped coming since that was four and a half years ago. And that day I knew I had to do something. And I had never really pulled together an event. But I was just I was in shock that we weren't the only ones I was in shock. There's so many people and some of the stories that were sent to me were so harrowing. That I thought, right, okay, we need to bring these people together, we need to listen to their voices, we need to find a way of doing this better. So at the time, you know, I was I was already doing quite a bit of work with NHS England. So I talked to some of the people there. And they said to me, Yvonne, you've got to do this, we can't. And I didn't understand that then, but I can now see it. Basically, some things have to be parent led and community led. And it was for me to sort of bring people together. So that afternoon, I did something really stupid. I announced on Facebook that we were going to have a conference in 4 weeks time. I didn't know anything about conferences have never planned one never organized one. I've been to a few but hadn't actually organized it. I didn't know you needed a team. I didn't know you needed a heck of a lot longer than four weeks.

Gill Phillips 23:34
Four weeks is a crazy short time, Yvonne.

Yvonne Newbold 23:38
Yeah, I mean, the expenses of the conference, basically what I was doing was ... if nobody bought any tickets, and we hadn't have had any sponsorship, we probably would have lost our house or something. I mean, it was crazy. But I just felt that no, we've got to do something. And Gill. I will never ever forget your support and your kindness. Because you helped out financially. You just got in touch and you just said, I'm right behind you. And you were just you know, you helped to make everything that's happened since happen. And I'll never forget that. So huge, huge thank you to you, but ...

Gill Phillips 24:17
Well, I just thought. We were friends by then, I'd followed your story. And I had no idea ... you told me, you know, some of these stories. And I had no idea of this whole world really, of having... you know , I've brought up three children, I think bringing up children's is an eye opener always

Yvonne Newbold 24:34
Yeah, absolutely

Gill Phillips 24:36
Within normal, you know, parameters, really. And I just couldn't imagine what you've been through as a family. And I could see the way that you could help others. What we've already said perhaps about the starfish just if I could help you to help one or two families like that. And I think neither of us had a clue what kind of scale this was going to reach and what's happened since

Yvonne Newbold 24:58
I think I'd have taken up knitting that day if I'd had a clue what was going to happen.. But your generosity and your belief in me, I can never ever thank you enough. But anyway, so we went ahead, we had the conference, the tickets sold out in about a day. So basically this conference, I mean, looking back, it was bonkers. But we went ahead with it anyway. And we had 4 weeks notice the tickets sold out in about 24 hours. We got some amazing speakers, the speakers, we had people contacting me saying, I'd love to speak at, it just somehow generated so much interest that we brought everybody together, we had over 120 people. And the stories that we learned that day, they were enough just to break your heart, families who were so struggling. And there was this moment when I said, I just stood up, I was talking and I said, please put your hand up. If you've ever been hurt by your child. Every single hand in the room went up apart from the speakers. And I got everybody to stand up and turn around. And suddenly, they all realized that they weren't the only ones. The whole thing. People were hugging people were crying, it was electric. Anyway, at the end of the day, I realized that something important had happened that day. And I said something else that sometimes since I've thought no, that was bonkers. I said, Should we stay in touch somehow? How about I start a Facebook group this evening. And they will went ... Yes!, Now I thought the Facebook group was just going to be the people that had been in the room that day. But no, what I've since found out is that children and adults who have got some sort of disability or additional need, have about a 50% chance of having at least some aggressive episodes, again, due to anxiety, it's the fight or flight, they have no control. These aren't behaviors that they're choosing. These are behaviors that happen when people feel so unsafe, that they are feeling completely overwhelmed. And in that moment, those children feel that they don't realize that they're hurting mum or dad in that moment, they actually believe that they're fighting for their very survival. And it's something that we as a society, are not even acknowledging. It's been massively under acknowledged as a phenomenon for decades. Which means that those families are all trying to contain it themselves behind closed doors. And most of them are feeling absolutely rubbish as parents,

Gill Phillips 28:09
And so lonely. So, so lonely.

Yvonne Newbold 28:12
And the thing is, I don't see them as rubbish parents at all. My parents in my group are my tribe, my community, if you saw what they were dealing with on a daily basis, they are the ninjas of parenting. These guys, they just have such advanced parenting skills, there are the hype alert the whole time, they're often living on virtually no sleep for weeks, months on end, they are being that... they're able to jump in to avert crises, and to prevent injuries at a moment's notice ... they spend all day lurching from one crisis to the next, these guys and then the rest of society blame and judge them and point the finger. I mean, it's it's tragic. We now have nearly 10,000 people in our Facebook group. And the other thing I started to do was I put together some information to try to help families to gain the confidence and the skills that I eventually got that turned Toby's behavior around. So I used to run workshops, and Malcolm was driving around the country to do workshops. And then of course, the pandemic hit. And that was really tough. Because I didn't think that the workshops were going to translate to an online digital format. I was very frightened that some of the material that I was talking about, some of the really heavy duty emotional stuff that we tackle. We were in a pandemic, people were very anxious and very frightened anyway. I didn't want to be the one to be responsible to say something to somebody who was isolated alone, with their own children with no community or support around them, and to say something that would lead them into a really difficult place. So I agonized, really thought long and hard. But of course, I also see in our group that at the beginning of the pandemic, a lot of people in our group are some of the most vulnerable families in the UK. And they were just abandoned. They'd lost their child's school place. They had lost any therapies, any services, any care, any respite, every member of their support teams had either been redeployed or furloughed. There, they were stuck on their own. The despair that was being shared in the group was heartbreaking. I was frightened for our community. So basically, I had to do something. So to cut a very long story short over the last 18 months. And of course, remember, because of my cancer, diagnosis, I was also shielding. I did not leave the house for a year. In fact, to be honest I've hardly left my dining table dining table in a year and a halfbecause I have so far, presented 250 2-hour long training sessions to parents

Gill Phillips 31:30
Yvonne, just stop a second in terms of... I want people to take in some of these. You've managed to put, as we go, you wrote a book that wakind of like just in passing. You set up a Facebook group with 10,000 people, you've done 250 Live sessions now. I mean, I can say that I joined one of your training webinars. We had talked and I was interested in so on. And you not only ran the session, you spent half that night pulling together all the material and answering people and pulling together notes. What you do is extraordinary. So it's not just running the sessions, it was just so dedicated in terms of maximizing every bit of learning and answering every question, you're just so conscientious. So yeah, just stop and acknowledge for a moment

Yvonne Newbold 32:20
Thank you. So basically, it's been incredible, this last year and a half - those 250 webinars that I've run, we have had over 20,000 people come and listen to at least one of them. And now if the pandemic had never happened, and if Malcolm and I were still driving from one church, to the other, you know, around the country, it would have taken over 40 years for us to reach that number of people.

Gill Phillips 32:55 Extraordinary.
You'd need a football stadium as well.

Yvonne Newbold 32:57
Exactly, exactly. It's crazy. So but what's really been incredibly rewarding, is to be honest, my heroes are the parents, the parents who are dealing with this, and then they come on to webinars, and they listen to me talking for two hours. And they probably think who is this bonkers woman telling me to completely change everything society's told me about everything and do it differently. But those who have actually taken that big, huge leap of faith, and have just thought, right, okay, we'll go for it. Well, we now have lost count of the number of children who have significantly been able to reduce their violence. As we got to about 1000. I just lost count, but we're getting about 10 Thank yous a day. And some of those thank yous. I mean, they just, I just beam with pride. And all I've done is I've just given some information. It's the parents who've put in the huge amount of hard work. It's the children who've responded to that. And the thing is, I look back, and it's my own family, and my children, I will never, ever be able to replace those 10 years of their childhood for them. It's not just the child, it's also the brothers and sisters. And what this work is actually doing is it's giving families hope. It's giving a child it's taking a child off a trajectory that otherwise might lead straight to the criminal justice system, or straight to one of these awful closed, locked psychiatric units. You know, the ATUs you know, the ones that are often in the press This is giving those children a real chance of a hopeful, happy, productive, wonderful future ahead. And it's also giving their brothers and sisters the same. And it's giving their parents peace of mind so that they're no longer worried about the futures. So I'm inordinately proud of all those families, they've done the work, all I did was point them in the right direction. So you know that they are amazing. And I've just absolutely astounded. And then of course, loads has happened since because of all of that. So we've got even more plans that have happened. But what I tried to do with all of those during the pandemic, was I tried to make them as affordable as I possibly could. So the first year or so, we charge £2.50 for somebody to come to our webinar. But as well as that all anybody had to do was to write to ,me they got a free ticket, if they really couldn't afford that. Because basically, it hasn't even paid for itself. Because as you know, Gill, there are lots and lots of on costs to run the sort of operation that I'm running really.

Gill Phillips 36:16
There really are, yes.

Yvonne Newbold 36:18
So we had to put the price up to £4.00.. But we're now moving into doing more longer term things. So that basically what we want to do is, we'd love families, still to have us to reach out to in 10-20 -30 years time, we'd love to do something now, that will us sustainable, so that we could become much more firmly established, both financially and organizationally. And that's the work that I'm really focusing on right now. So it is been amazing, but it's still a huge mountain to climb to get there. So yeah,

Gill Phillips 37:11
I think you're telling the story so well, because you can see the different steps. And for you to come out with something like "all I've done, all I've done is just give some information". I mean, obviously the listeners to this will know that that isn't an "all I've done" or a just, it's amazing. But you know the way you tell it in terms of giving credit to the parents, and for them to be able to have the courage and to try something new, and so on. And the the results that you've had is extraordinary. And I think the challenge for all of us with doing something that's perhaps tied in, you know, what you do what I do, perhaps a bit too much with one person. So what happens when that one person isn't there to continue to make things to use the buzzwords, sustainable. So I was incredibly excited when you told me your news in terms of a massive breakthrough. And that's what it is, really is how you're gonna make this work sustainable. So tell us about that.

Yvonne Newbold 38:09
Oh, it has been so exciting. Over the last three months, we have been given the most amazing opportunity. The only way I can describe it is that this falls into the dreams come true category. As you know, I do an awful lot of work on Facebook. And I think our Facebook group is really the sort of heart where everything, all the other work that I do, comes from and in the world there are I think it's 620 million Facebook groups. Now obviously some of them are sort of emotional difficult matters, like mine, some of them are village noticeboard type groups, some are birdwatching, you name it, there's a Facebook group for it. Facebook themselves want to invest in the groups that they felt were making the biggest social impact within their own communities. And there was an application process I applied way back in May. It's been incredibly tough to get through it. But basically, Facebook have selected 130 groups throughout the world out of 620 million, so tiny, tiny, tiny, and only 10 of those groups are the UK, and we're one of them.

Gill Phillips 39:38
That's extraordinary. I'm trying to do the maths, I mean, that would be one in ...

Yvonne Newbold 39:44
One in a smidgen, I think so, what that means is that for the last three months Facebook have been giving us intensive training , intensive mentoring from some really, really top international management consultants. And they've also given us quite significant funding, so that I've been able to afford to do things that I was never able to afford to do. So we've managed to rebrand, we're now setting up ... we were the SEND VCB project, which was the special educational needs and disabilities, violent and challenging behavior project. We're now Newbold Hope, we've completely rebranded, we've managed to have a designer to do all our banners. We've got company colors, which was a very proud moment. So you know, we're now navy, red and turquoise. We have a little tagline, which is, 'stay curious'. Be kind, I love because yeah, I love the word curious. My favorite word is hope. My second favorite word is curious. If you stay curious, and you keep asking why? All those why questions? Why is the child behaving like that? What's happened? Why? just stay curious. If you keep on asking those questions and keep on trying to find out, you won't be able to close your heart and close your mind. And you won't be able to become judgmental. And I still believe that the judgment, and the blame throughout society is incredibly damaging. And I think it's much more far reaching. And its impact is appalling. So anyway, with Facebook's help, we now have a very, very clear path that we're hoping to follow over the next six months or so. So the first thing we're going to be doing is we're going to be opening a club for parents who want to help their children reduce any aggressive behavior. But unlike a webinar, it's not going to be at the end of a two hour session where I say bye then, I hope you get on, okay, this will be ongoing, you know, they will be able to access the material, I will do question and answers regularly in the group, they'll have other people to ask, there will be much more what I want to almost make it feel as though we're all holding their hand. And as they're implementing the things as they try get the strategy. If it doesn't go well. Or if it does go well, they can celebrate it with us all. If it doesn't go well. Well, let's talk about it and see what we can do. So you know, could we do it slightly differently, what might have made it not go well, maybe that's the wrong strategy, maybe try this. So you know, we're just going to try and do something that will offer more support. So that's first thing we're doing. The next thing we're going to be doing is we're going to be with all the webinar material. And altogether, I've got 16 different topics that I do webinars on, I'm going to take 10 of them. And we're going to develop each one into two pre recorded trading sessions, which will have a lot more material will be much meaty, because what I found was each of the trading sessions I've done, it's been more more of a speed talk, because I'm learning all the time, and you can't fit it all into two hours, I'm going to talk really, really quickly try to get it all in. So we're going to slow it down, we're going to do it over a double session, we're going to have the basics and an advanced for each course. We're also going to move much more into professional training courses, because there's very little training. One of the reasons that families do get judged and blamed is that the professional staff who are supposedly supporting them don't get any training whatsoever in this. So we will be providing that. So we'll be doing much longer, more structured courses for both parents and specific versions for professionals like teachers or social workers or clinicians or CAMHS staff as well. And all the courses are going to be CPD certified. But we're also writing a couple of e-books because some people prefer to read. So we're going to be writing that material out so that you can access it, there all sorts of other little bits. But the really big exciting isn't news, and Gill, I so want you to come, on the second of April 2022, which will be five years and one day after our first conference.

Gill Phillips 39:52
Oh really!

Yvonne Newbold 41:40
We're holding a conference, we're going to bring people together, we're going to have some excellent speakers, we're going to basically see how far we've come, see what else we need to do. But we're going to absolutely make sure that the people that really matter in all of this, the families who are dealing with this right now, can be welcomed and can be heard and can be listened to. So we're just so excited about and I've given myself six months, not a month. Yeah. So you know, we're doing it properly.

Gill Phillips 45:44
It's in my diary, if you'd like me to come on, I'll be there,

Yvonne Newbold 45:47
Oh, you will be guest of honour. Because Gill, quite frankly, if you hadn't helped me out five years ago. If you hadn't done that, then we wouldn't have been able to get to where we are now. So thank you.

Gill Phillips 46:03
Well, I'm just so proud that that, you know, I'm proud for myself as well, to be honest, that that's, you know, made a difference, because that's what we're trying to do, isn't it and neither of us knew where it was going. But it's only because of your dedicated hard work and that bucket list, that one thing? Yeah, just think about it, if you could rewind five years ago, and have been told that all of this would happen. And now the things that you've just summarized, and of all the things you said there in terms of webinars and so on, I think the one thing that I liked the best was to slow things down. Because I think the danger for all of us is you've got so much to say and so much to do. But this topic feels as if it needs peace and calm. It's what you're talking about, isn't it? So for you to get that opportunity and for parents to be able to, and to have that incredible support in terms of, well, it's not just the theory, and I've tried that and it didn't work, it didn't work very well, stop. It's to keep those conversations going and to be able to support people in that way, I think it's just phenomenal,

Yvonne Newbold 47:09
I suppose as well, what I've learned, and it has been a huge learning curve for me over the last few years, is that and I'll tell you where the starting point is, the starting point every single time is working with that parent, who nobody arrives in our group, crushed, broken, feeling like rubbish, to help them to start feeling good about themselves. To help them to understand that no, this was never their fault. And it wasn't their child's fault, either. But there's lots you could do about it. Because the thing is, for a parent to be able to put in the consistent work to support a child to turn around their behavior. They are going to need to be at the top of their game. And yet, all the judgment, all the blame that they will have heard, often from professionals from schools, from social workers, from CAMHS, from neighbours, from people in the Tesco car park, to their own extended family, sometimes their own other children or their own other partner, their best friends, they will have had so much judgment and blame in almost every circumstance. That's what we really need to stop because that does so much damage. And how does it help parents for me to say, oh, you're a rubbish parent, you're not really good at this. How's that going to help that child? Because surely we're all better people, better parents, and everything gets easier, the better we feel about ourselves. So my first job is to try and make parents feel better about themselves, and try and help them to be a little bit self caring, and self forgiving. And from there? Well, the only way I can describe some of the stories that I hear is it's been like watching magic happen every single day. And it is just incredible. And I always felt that if Toby could turn things around with his intellectual capacity with the fact that he is nonverbal, with his huge range of different impairments and disabilities. Well, if he could turn it around, I think anybody can. And I think we've proved that again and again and again and again. And it's probably what it is definitely the most rewarding work I've ever done. I love it. Absolutely. I've got the best job in the world.

Gill Phillips 49:57
I feel that. I mean it must be SO rewarding. I mean, you're using that word magic. When you see it, I guess I can relate to that in an obviously very different context in terms of our work and our workshops and you see somebody just get something in a way that you know, is going to be significant from that point onwards. That's the magic isn't it, and the other thing I'm picking up is, you know, I love to kind of weave threads a little bit between the different podcasts and the different guests and so on. And something that jumped out at me that Rachel Grimaldi said earlier in the series was, she's an anaesthetist , and she tries to make each patient if you like, feel that they're the only one who's got her attention at that point, they are the one that she's looking after. And I'm picking that up in terms of how you're working with these different families who perhaps feel rubbish at parenting, because of all those things that have ... the Tesco car park type thing - that I think will resonate with listeners, if you like, that we can all ... I remember Yvonne, my eldest child, whenever he was playing up, we'd bump into the same woman in the village. Always. Absolutely, always. And I don't know what makes that sort of stuff happen. But I felt just such a rubbish parent, because that was kind of like all she saw. And you want to say no, it's not like that. He can be really nice. So for you to be able to give those parents that belief, and that hope. Your 'hope and be curious', Yvonne ... 'stay curious'. It's amazing.

Yvonne Newbold 51:31
Thank you. And what's wonderful as well is how the group has evolved. It used to be that I was the only one that had to go in at each of the comments, say, look, try this, try that try the other. Now. There are so many people that have been through the webinars, through the training, that have read all the other material that I've written and produced and what have you. There are now ... if somebody says, Oh, this is happening, immediately loads and loads of people are able to offer the same sort of help and compassion, because we've got so many success stories in that group. Occasionally, a mum or a dad might drop me a line and say, Look, Yvonne, I'm leaving the group don't want you to feel that we're abandoning you. But to be honest, we don't need it anymore. So I always write back and I say, No, you're not leaving. You're graduating. Yes. We we actually do a little post when we know about somebody leaving. We actually do a little post, we congratulate somebody for actually graduating because they don't need us. That,, you know, wouldn't it be wonderful if there was nobody in the group because nobody needed us.

Gill Phillips 52:42
That's the ultimate isn't it, yeah.

Yvonne Newbold 52:43
Isn't it. But I've done the maths based on the research that I found. There are two pieces of research I found. One was from a team in Missouri, I think in 2013, who looked at 1800 families, all those families had a child who had ASD or Autistic Spectrum Disorder, diagnosis, and they found that 56% of those children were at some point physically aggressive. Now, it's not because the children are autistic, it is because those children because they're autistic, have much higher levels of anxiety. And often, within our society or medical teams, that anxiety goes untreated, even unrecognized. In Ireland, the following year, in 2014, they looked at adults who had a learning disability. And in the group of adults that they were studying, they specifically looked at three different types of aggression - physical aggression, aggression towards property and aggressive language. And the rates ranged between 49% and 63%. So again, just over the half mark. Now, if we extrapolate that and look at the number of children in the UK, it probably means that today, about a quarter of a million families are facing this totally unsupported, totally alone. And with no understanding from anybody, no training, no nothing. Now, I'm incredibly proud that we have 9350 people in our group already, but it's only a drop in the ocean. We've still got nearly a quarter of a million people that need this sort of help but don't know about us. So one of the great things about this Facebook initiative is that we will be able to become a little bit more high profile as well. So people will be able to see what we're up to. And of course It's all a balance as well, because we don't want to go corporate, although we're going to become a community interest company,, we very much wanted still to be grassroots with heart and soul where each individual family matters. We don't want to become sort of corporate where everybody gets processed. And that's not what we're about at all. So, yeah, so that's what I do.

Gill Phillips 55:29
"That's what I do". So hopefully, now obviously, it's what I'm trying to do through the podcast series. I mean, thank you so much, Yvonne, for spending the time , talking to me, telling your story. But hopefully, the podcast series can itself help build those networks and get your story out there. I think the fact that you've taken the time to explain, you know, where your work came from, obviously, with Toby, and then the challenges and how you've tried to do it in certain ways, and started small and worrying that it wouldn't be sustainable and then suddenly getting this incredibly exciting injection of everything really from the Facebook community. And then one thing you haven't talked about that I've been fascinated about - the other amazing people that you're meeting,

Yvonne Newbold 56:17
Yes. Oh, goodness, I'm in awe of the other nine people that have been chosen for the UK cohort. And can I do a quick shout out to all of them if I could remember them all? I'm just gonna have to come out with all nine of them, yeah. Okay. Victoria you rock with 'Get your belly out'. Neil. I love you to bits with 'Delegate Wranglers'. Jaidee - Black Owned Economy. You're doing fantastic work. Kelly, your work with women and research is just absolutely inspiring. Louise, food teachers putting healthy food on the map for the next generation of kids. I mean, you can't even put into words how important that is. That's my view. Jo. 'Solo female van life' that is just wonderful - women who are living in vans, travelling and having adventures all by themselves. That is just fantastic. Iolo, with your fashion. I love you. I just love, I just thought, amazing. Claire, now Claire is just ... you just rock Claire, you are the coolest person I know. Claire started a Facebook group for parents at the beginning of lockdown. And within about I can't remember, it was about 4 or 6 weeks, she had over a million people. And it's gone huge. She just absolutely rocks and Nafisa xxxx, you know, I just I adore you. I love the work that you're doing with the Muslim Mamas. And all the work that you've done for cancer awareness. It's just ... this group of people absolutely rock, you ought to have all of them on your podcast, Gill!

Gill Phillips 58:08
So I'm feeling a whole different life coming on, because I now want to know about all of these people.

Yvonne Newbold 58:13
Oh, yeah,

Gill Phillips 58:13
I'm sure one or two of them might be future podcast guests.

Yvonne Newbold 58:16
Yeah, I'd also love to shout out to Catherine Hendrick and Mathilde, who are the fabulous coaches and trainers and also to Shayla who works for Facebook, and has basically just believed in me all the way through. And even when I haven't, all of them have just been fantastic. They're helping us put this on the map. It's just brilliant.

Gill Phillips 58:46
So that's amazing. So I mean, obviously, if you send me any links, I can add those into the programme notes and so on, so that anyone who's really interested could look up and find some of these people.

Yvonne Newbold 58:55
Yeah.

Gill Phillips 58:56
However, you want to use it really

Yvonne Newbold 58:57
Lovely. Okay, give me a couple of hours. And I'll put some links together. And I can put links to all of their Facebook pages if you like.

Gill Phillips 59:04
Yes, whatever you like, that would be fantastic. So Yvonne, I'm so glad you had a chance there to give a shout out to your amazing people at the end. Do you think there's anything else that you know we'll be gutted if we've missed out?

Yvonne Newbold 59:14
I tell you what, yes. Can I can I make another shout?

Gill Phillips 59:17
Yeah, right, okay.

Yvonne Newbold 59:19
I have got two amazing colleagues who work tirelessly to help me make the page what it is. They are Snow and Amanda, you both absolutely rock I adore you to pieces. And thank you for everything you do. There are other people involved too and there have been other people all the way through. We've had some amazing people on our team, and people dip in and out of it. But the thing is, everybody who helps with this work comes from the same background I have. Everybody has joined the group in a desperate state, has made things work, and then they joined our team to help make it happen. And so we've all got lived experience, and I don't think it would work without that.

Gill Phillips 1:00:13
No, it's so authentic.

Yvonne Newbold 1:00:16
Yeah. Yeah. That's it, I think.

Gill Phillips 1:00:20
Okay, so thank you so much, Yvonne Newbold, we've broken all our rules. We don't have any rules. I just said to Yvonne before this one that, you know, with the series, generally, I'm trying to keep to half an hour, this one was never going to be half an hour, because it's just such an amazing story. And I think, to put it together with all those different elements, so that it makes sense to people, hopefully, it will be a valuable resource that people can really understand what you're doing and why and how we can spread it out so that all of those ... how many families was it that you want to reach?

Yvonne Newbold 1:00:51
I want to reach a quarter of a million in the UK.

Gill Phillips 1:00:55
So who on this call can help Yvonne do that? Because that's really what it's about, reaching all those families, that that magic is potentially there for, but not at the moment happening. Let's do it.

Yvonne Newbold 1:01:06
Thank you. Thank you, Gill.

Gill Phillips 1:01:08
Thank you, Yvonne. I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favorite podcast platform. And please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me. And let's hope that together, we can make a difference.

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13. Yvonne Newbold MBE - founder of Newbold Hope - Wild Card - Whose Shoes?

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Today, I am talking to my good friend Yvonne Newbold, MBE , the founder of Newbold Hope. Smashing taboos and giving hope to families, reducing anxiety-led difficult and dangerous behaviours in children & young people with additional needs and disabilities. Lemon lightbulbs 🍋💡🍋Please see the ...

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Rachael Grimaldi (Episode 9) WINS Global award

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Rachael Grimaldi (Episode 9) WINS Global award

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December 2021 WOW!!! Simply INCREDIBLE!! Massive congratulations to Rachael and the CardMedic team!!

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Rachael wins global finals - She Loves Tech

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Alice Ladur wins VC Postgraduate Research Prize, Bournemouth University 2021

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Alice Ladur wins VC Postgraduate Research Prize, Bournemouth University 2021

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Congratulations Alice! VERY proud of you. https://twitter.com/EvanTeijlingen/status/1456170380419387398

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Dr Farzana Hussain - (Episode 2) GP of the year 2020!

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Dr Farzana Hussain - (Episode 2) GP of the year 2020!

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Dr Farzana Hussain was named Pulse GP of the Year in November 2019

Bangladeshi origin British General Practitioner (GP) Dr Farzana Hussain is among 12 Covid-19 frontline workers photographed for a portrait series to mark the anniversary of the UK's National Health Service (NHS).

The photographs for the NHS tribute collection were taken by celebrity photographer Rankin.

"It's wonderful to be part of this campaign and to be photographed by Rankin. Now, more than ever it's important that we not only recognize the vital role primary care has played in fighting this disease [Covid-19] but to also shine a light on the humanity that makes up our GP practices, community services and hospitals," Dr Farzana said, reports the Newham Recorder

Dr Farzana has been working at Project Surgery in Newham, London since 2003. In November 2019, she was named GP of the year by UK monthly medical care magazine Pulse for managing her practice alone following the death of a senior partner.

"I am so chuffed. It's just such a morale boost. I know we work for our patients, but something like this is just such a lovely external appreciation. I feel quite emotional. I just feel on top of the world and that response in there was just absolutely beautiful," Dr Farzana said after receiving the award, reports Pulse.

In an interview with British weekly newspaper Eastern Eye, Dr Farzana said she had grown up around medicine, with her father travelling to the UK on a scholarship to do some post-graduate study as an anaesthetistfrom then East Pakistan in 1970.

"The war broke out in the year after and he lost his scholarship and he was left caring for a wife who was in unpaid work (was not working) and also a one-year-old son. So, he stayed [in the UK] and served the NHS as an anaesthetist for many, many years. He is now 78 and he retired when he was 60," she said.

"As a five-year-old, I accompanied him and really enjoyed the chocolates given to me by the nurses and seeing all the patients in the ward when I was a little girl," Dr Farzana added.

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Bangladeshi origin British doctor photographed for UK NHS tribute collection

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Dr Farzana Hussain was named Pulse GP of the Year in November 2019 Bangladeshi origin British General Practitioner (GP) Dr Farzana Hussain is among 12 Covid-19 frontline workers photographed for a portrait series to mark the anniversary of the UK's National Health Service (NHS).

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Prof. Lesley Page (Episode 11) - honorary degree from University of Iceland

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Prof. Lesley Page (Episode 11) - honorary degree from University of Iceland

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Congratulations and well deserved, Lesley!

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Lesley page - honorary degree university of iceland

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Yvonne Newbold (Episode 12) Facebook Community Accelerator award

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Yvonne Newbold (Episode 12) Facebook Community Accelerator award

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Yvonne Newbold - Facebook Community accelerator image

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Joan Pons Laplana (Episode 5) - Nurse of the Year 2018

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Joan Pons Laplana (Episode 5) - Nurse of the Year 2018

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Joan Pons Laplana - BJN Nurse of the Year 2018

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With thanks to Lyse Edwards who had a BIG part in the fact I spend so much time creating padlets!

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Episode 14 - Dr Alice Ladur - Whose Shoes in Uganda!

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Episode 14 - Dr Alice Ladur - Whose Shoes in Uganda!

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Chatting to Dr Alice Ladur about her award-winning PhD work - using the Whose Shoes board game with men in Uganda, bringing about culture change and improving maternity care.

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Gill Phillips 00:10

My name is Gill and I'm the creator of Whose Shoes, a popular approach to coproduction. I was named as an HSJ 100 Wild Card, and one to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you

Gill Phillips 00:45

I'm very proud of my Wild Card Whose Shoes podcast guest today. That is the word that I want to use. I first heard about Alice Ladur when I met some of the research team at Bournemouth University back in 2016. Alice was just beginning her PhD, and they connected us. And then Alice came to our Whose Shoes maternity workshop at UCLH in London. Alice loved Whose Shoes and we started to hatch a plan as to how she could use it in her PhD work in Uganda. Today's story is about what happened. I'm so impressed with Alice's quiet, gentle perseverance in making extraordinary things happen without a big fanfare. This is a podcast we've been waiting a long time to record, delayed by tickly coughs, first mine and then Alice's, which are not very conducive to making podcasts. So a huge welcome Dr. Alice Ladur. I'm so proud of you. Congratulations on winning the Vice Chancellor's Postgraduate Research Prize. Can you tell us a bit more about that?

Alice Ladur 01:54

Thank you very much for having me. Excited as well to finally get to have this discussion that we've planned for a long time. I would like to start by saying thank you, to you for graciously allowing me to use and adapt the board game 'Whose Shoes' to the Ugandan context and I'll be talking later on in our discussion about how it all went and the exciting parts that we had during the fieldwork session in Uganda. I would like to say thank you to Bournemouth University for the Vice Chancellor Scholarship, which opened an opportunity for me to leave and study a doctorate in the United Kingdom, I'm forever grateful for this award. And also, I'd like to say thank you to the British Federation of women graduates for the grant that was accorded to me during the write-up phase of my dissertation. I n a special way, I'd like to thank my PhD supervisors, Professor Vanora Hundley and Professor Edwin Van Teijlingen, who supervised me throughout my research at Bournemouth University. My PhD focused on improving access to maternity care services in Uganda to help reduce maternal mortality. Uganda is grappling with a high maternal mortality ratio, despite a steady decline over the years. And research evidence shows that most maternal deaths occur during or immediately after delivery. Antenatal care presents a very unique opportunity for women and their families to learn about risks associated with pregnancy and also to plan and to have the options ready in terms of when the delivery time comes. I want us to briefly understand the narratives around maternal deaths in Uganda. And when we are looking at maternal deaths in Uganda or for most of Sub-Saharan Africa, one needs to draw on these social cultural meanings that society places on childbirth and women. You see pregnancy and childbirth hold very significant meanings, one in which women find their identity and social status in the Ugandan setting. And there is a lot of pressure that is placed on women to produce children to extend the family lineage with a special preference for the male child. The pressure to give birth is often exerted by the woman's in-laws, husband and the community and it is important for us who are interested in maternal health or safe motherhood, to think of ways how we can integrate the family structures, especially the immediate family, when we are looking at safe motherhood interventions, or generally looking at improvement of maternal health outcomes for women in Uganda and beyond. Uganda is a patriarchal society with men having considerable control over resources and decision making. And as such, they need to work with both men and women to improve maternal health. As a public health specialist who has worked in the field of maternal health in Uganda, and in parts of southern Africa, my heart goes out not only to the rural woman but also to all women on the African continent. You see, although Africa consists of several countries and diverse cultures, these differences tend to disappear when it comes to the way women are treated and their social status. And this is largely fuelled by gender roles and communalism and you find that an individual is subordinated to a group, which has direct impact on health-seeking behaviour. My interests in male involvement in maternal health started way back in 2006, right after my first degree, and working in the community, looking at provision of HIV AIDS prevention services to post-conflict communities in northern Uganda. So through the health education sessions, that were targeting men using community dialogues, role plays and drama series, there was an observed decrease in domestic violence. I was able to see first-hand the importance of involving a woman's immediate family in the pursuit of improving women's health. Villages that were known for domestic violence, were now champions working alongside health workers, to denounce violence against women and promote uptake of health services. This in a way motivated me to carry on looking at aspects around working with families, working with the immediate family that surrounds a woman in terms of improving general health outcomes, whether it was in the field of HIV or directly looking at pregnancy and childbirth. I would like to emphasise that when we are discussing male involvement does not take away the woman's choice. And male involvement is encouraged, and dependent on whether the woman wants to involve her partner and her immediate family or not. And it may not be applicable for all women, as the needs and context of individual women may be different.

Gill Phillips 08:27

Oh, that's, that's just such a powerful explanation, Alice and I learn more every time I talk to you. And obviously, it's just so different to what we're familiar with in the UK. And for us to manage to use Whose Shoes, and it's a board game, to make any kind of difference at all in this world that obviously I'm not familiar with, but I've been fascinated with. I don't know ... just the whole story really, obviously, the involvement of men, and for me to learn about the culture and what it must be like to be a woman in Africa with that pressure to produce children. And then you say, the preference for the boy child. And I'm just so looking forward to you telling our listeners the story of how this evolved, because it's quite a striking idea really, isn't it to use a board game in this sort of situation, a bright, colourful board game with little shoes with men in Uganda who aren't used to talking about maternity care is such a story. And I want to somehow do justice to it really and to what you've achieved.

Alice Ladur 09:39

After I attended the workshop in London, which was really an eye opener for me, because I was a participant, it gave me many ideas. We were looking at a number of aspects around improvement of health services within the UK. And we were all seated at the table, not knowing, there are different professions, but through the engagements we had, I learned so much from my colleagues on that day, because there were several moments to pause and reflect and think in our different capacities, how we've interacted with health services and how the outcome has been or has looked like. And through that reflection, what I was quite intrigued and thought perhaps if men had an opportunity to come together in a safe space to reflect on their own individual actions, and also on the community expectations or the broader structures that fuel or that facilitate some of the inequities within the Ugandan community. So through that process of reflection, and then obviously coming back to Bournemouth and designing a pilot study, which was very interesting, as it gave us pointers because at the very beginning, I was grappling with the question around would it be acceptable? How would I introduce an educational game for the first time to talk about maternal health or talk about pregnancy and childbirth, within a different setting, from the UK system. So from the pilot study that targeted Ugandan men, that were living in London, it was interesting that once the table was set, with the board game, and the little shoes, that was the first captivating moment for them, everyone wanted to look at the shoe. So they held the shoe, the literal shoe, and we then looked at the game, and they looked at the dice and immediately started throwing the dice and picking up cards, and without any formal introductions, and I let them carry on playing the game.

Gill Phillips 12:26

That's amazing!

Alice Ladur 12:27

It was really interesting to see that come alive. And after, when we started the discussions around the different experiences in childbirth, or that women go through during pregnancy, it gave the different participants an opportunity to reflect as fathers, how their own actions, or their indifference impacted on their spouses when they were pregnant. And during the process of delivery. And through that, I was able to see changes as well, immediate changes, because after the session, immediately, one of the participants went to check on the wife, was somewhere else, and finding out she was okay. And I thought that was very, it was so real, that indeed, this is something that will work within the Ugandan setting. And also receiving feedback, valuable feedback from them on how the messaging should be adapted, was very helpful to prepare for fieldwork in Uganda.

Gill Phillips 13:47

So that's fascinating. Alice. Now I'm delighted to hear in particular, the men living in London, were influenced by a board game. And that's a pretty special outcome already. So how did you move on from that to think about your field work, and as I understand it, government ethics and ... the whole process just felt difficult. And I was hoping that you'd manage to actually push through and make this thing happen.

Alice Ladur 14:14

So the findings from the pilot study were really helpful, gave me areas to think about that I hadn't considered and how the messages needed to be a bit more specific and more hard hitting in terms of addressing some of the cultural aspects that have impacted on women during pregnancy or those that are creating barriers in terms of access to health services. So coming back from the London pilot, I had to think through some of the card messages to be more specific in terms of addressing the cultural aspects, so I included messaging around nutrition, I included case scenarios of women that had barriers or had challenges accessing health services, and the outcomes. And some of them were tragic. So including some of those very surreal case scenarios made the communities the men during fieldwork actually, each drove the message home. So I was very grateful for the London study that it brought out... it helped me design very specific and very had hitting messages that were relevant within the Ugandan setting. The fieldwork was an interesting time because after obtaining ethics for the study, the different approvals within the community structures, there was a bit of political unrest around the country generally. And this unrest later came out in terms of looking at the colours on the board game. The country then was divided into colour lines, you had yellow, and then you had red. And both colours tended to have a dislike for the other. So if you found those that loved red, were leaning towards everything red and detesting everything yellow, and vice versa. I had to spend some time introducing the colours on the game and the purpose why the study was being held. And also reinforcing the fact that maternal deaths knows no colour divide, and knows no political affiliation. The choices we make, ultimately will improve the lives of women, and also improve the lives of our community in general, make the communities a lot better and a lot happier, for all. So after the ethics applications and approvals, we went down to the community structures, and we also got approvals. And then we started recruitment in the communities. Again, recruitment was through the women, the pregnant women at the health facility. We were careful to promote the woman's choice in accepting the partner to be part of the educational intervention to play the Whose Shoes game. So for all the women that consented for the study, and we asked them further if they were happy for us to contact their spouses to participate in this educational game. And for those that accepted, we contacted their partners, and those were the ones that we used in the study.

Gill Phillips 18:20

There was so much for you to think through though, wasn't there in terms of getting it right, politically, and in terms of ethics approval, and then with consent, I think you've done so well to navigate this path, because it's very, very innovative, what you're doing Alice.

Alice Ladur 18:36

Thank you. It was important for us to get it right, in terms of the community structures and all the different approvals, because in the end, it paid off. The communities were accepting. Despite a climate of political unrest and tension, the fieldwork went on really well.

Gill Phillips 18:59

And as I understand in a really rural area.

Alice Ladur 19:04

Yeah, the study was in rural Uganda, a bit far off from the capital city. And it was within the primary health care facilities, which are in the communities and more accessible for the women and their partners as well. So through having this study, nearer to the households, made it a lot easier for them to participate and also to access health care when they needed to during this period. And we were introduced to the women by the midwives at the health facility during the antenatal care sessions. So it was really interesting to attend the antenatal care sessions. So once the fieldwork started, the recruitment of the couples, the pregnant woman and the husband, I interacted more with the women and then I had to engage a male facilitator for the Whose Shoes board game, due to the cultural dynamics within this setting. But I had observations of what was taking place during the board game sessions as well.

Gill Phillips 20:21

And it sounded as if you recruited a very special person there. And that role was key really wasn't it in terms of who that male facilitator was and how they would facilitate the sessions, I guess.

Alice Ladur 20:34

It was very interesting and a beautiful coincidence to have a male facilitator, who was a father of two children, and having interacted with maternity services, he literally was in the labour suite, when both his babies were born. And he had first hand experience of the importance really of involving husbands and also the immediate family. So having him as a facilitator, was helpful in motivating the participants, the male participants. And really reinforcing the fact that it is possible to be part of the process, and also addressing some of the cultural stereotypes in the communities around having men in the labour suite. So him having been in the labour suite, and also, having been actively involved during the process of the wife's pregnancy, was very helpful. As when he started talking about his experiences, men listened. And they were able to open up and share some of their fears as well. And this really became a learning point for all of them. They were learning from each other.

Gill Phillips 22:03

I think there was something that struck me how, as I understand unusual it was to get men actually talking and sharing about personal issues and feelings and women's business in terms of childbirth and pregnancy. That was quite a big cultural shift.

Alice Ladur 22:24

Yeah, the cultural dynamics are largely pregnancy and childbirth is a woman's business. So having men interact and talk about pregnancy and childbirth, in a way was breaking barriers. And having the male facilitator to facilitate sessions around that was key in giving men opportunities to open up and share the experiences. And their challenges alike, and I also want to point out that this male facilitator was very experienced and humorous in how he facilitated the sessions, because there was a lot of laughter. But yes, so complete strangers bonded over a board game, and shared so much with each other. And some of the content was beyond the scope of the study. But most importantly, they sought medical advice, and they were signposted to the health facilities where they would get medical support, which was a highlight from the discussions as well.

Gill Phillips 23:42

I think, for me, in terms of an outcome, learning that women were actually more supported to go to a health facility ... I think you'd said to me that beginning of the study, men hadn't understood perhaps why women needed to go to antenatal care, why they needed to go to the kind of hospital facilities because they weren't ill. I remember you saying they didn't have malaria! So to accept and to learn about antenatal care, and to learn that some of the logistics of antenatal care, that it takes time. And if the women were there, and they were delayed, that it wasn't because... tell us about that. What the men might have thought was happening when the women were delayed at the hospital and how that developed.

Alice Ladur 24:30

An interesting or rather a surprise moment for me during the study was learning about some of the misperceptions that men had around maternity services, because a number of men mentioned that they thought antenatal care clinics were spaces where women went to report them and that's why they took so long within the health care setting, so addressing some of those during the discussions, helps in allaying some of the fears. We had specific messages around what happens in antenatal clinics, the services that are offered the importance of antenatal care both to the woman and to the family, and how importantly men can play a role within the whole process. So this gave opportunity for men to reflect on their own actions and also to address some of the misperceptions they had around antenatal care services. The maternity clinics or generally the health services tend to have long queues because they are experiencing structural challenges around staffing. So there are significantly long waiting times in accessing health care in parts of rural Uganda. And this delay at the health facility has been misinterpreted on a number of occasions. So the board game created an opportunity to allay some of those fears by explaining the health services and some of the challenges. And through explaining the services and what takes place during antenatal care settings, men appreciated more the reasons why women may take significantly longer once they've gone to access care, and also why they need to go for antenatal care in the very first place. Because the perception again, is around seeking health care when you're physically sick, and having symptoms like malaria, fever, feverish or headache, and other complications, which can be clearly seen. But pregnancy is not a complication. And explaining the importance of healthcare during pregnancy helped a lot during this period.

Gill Phillips 27:17

And that extended to nutrition specifically as well. I remember you telling me the story about the market across the road and the shift in attitudes of the couples ... tell us about the market and the healthy eating.

Alice Ladur 27:30

So the study was held across the road from the health facility. And from across the road, it was next to a trading centre or next to an economic hub within the village. So I took some time to observe the environment, looking at behavioural aspects of the participants and generally the community. So during the antenatal care sessions, women are encouraged to mind about nutrition, due to challenges around anaemia, which is largely due to poor nutrition. So women are encouraged to increase the uptake of green leafy vegetables and also animal products. But during the antenatal care sessions that were led by the midwife, I also observed that women tended to grumble or whisper to each other. And during those whispers, they were complaining to each other and saying that it's interesting to hear all this talk around nutrition, but when we get home, we cannot implement it. Because of the dynamics at home. Our husbands may not be very keen on having these changes made at home. So during those, and again, I need to emphasise that within the Ugandan system, or within this part of Uganda, men tend to make decisions around nutrition in the home, in terms of buying the food at home and also deciding what comes on the table eventually. So it was important for us to integrate nutritional messages during the board game sessions about healthy eating and the different kinds of foods. So after the board game, and one of the vivid behavioural aspects that I found very interesting, was that men were going to the market which was not far away from where we were during the sessions. So men went to the market, they were buying the animal products and also buying the duck leaf leafy vegetables and going with it home, or giving it to the wife as they were heading home, which to me was a very special moment and indicated that the messages were being taken seriously, that they are reflected on during the board game sessions.

Gill Phillips 30:11

And that's starting to be real outcomes, isn't it? You know, you could see that behavioural change, which is fantastic. One thing Alice, I've realised that we've not mentioned, which I found fascinating at the time was experimenting at the beginning. Obviously, you've talked about choosing which scenarios would work best, recognising gaps and developing new scenarios, particularly with the pilot group in London. At what point did you find it necessary? We actually translated the scenarios into Luganda, the local language didn't we?

Alice Ladur 30:44

Yes. So at the very start during their ethics application, the games were translated into the local language, not just the games but all the study materials were translated into the local language. And using the local language, removed the barriers between us, the researchers, and also the community because we interacted and spoke the local language. And we were able to interact freely with both the women and the men as well in the communities. And speaking about, and relating to the cultural and community contexts within this setting, I think also served to reinforce the messaging that we had served to reinforce or rather to promote the uptake of the messaging that we had around nutrition and also generally uptake of health services within the setting.

Gill Phillips 31:45

And I think anything that reduces barriers, and I think you found various ways, and from some of the things that you've told me in terms of, if the men couldn't read the cards, then one of them could, and everybody can move the little shoes, and they started to appreciate that it was a coproduction tool rather than a competition.

Alice Ladur 32:07

It was nice to see the men ... the game itself in its design promotes teamwork. So you have your teams, so you have the different colours. And through those different colours, you get to form a group or a team. So you had red, yellow, blue, and green. And it was nobody wanted the yellow colour, again due to the tensions during the study period whereas everyone was fighting over the red colour within the board game. But in the end, moving the shoes around, they forgot about the different colours. And I'd like to share one of the quotations, or rather an extract from the participants around the game and also a bit about their views or perceptions they had when they initially walked into the room where they were meant to play the board game. It says that "When I came here, I saw this board game, I felt it was a children's puzzle. But when we started playing the game, reading the cards, it's really wonderful. And the people who thought about this really thought so well".

Gill Phillips 33:31

So lovely. So lovely to hear people's actual words, isn't it? I love it!

Alice Ladur 33:37

So in a way, the display of the little shoes, the cards and the board game draped in bright colours, yellow, red, green, and blue, contributed two aspects - one that in the beginning, they thought it was perhaps a children's game. But then once they sat down to play the game, they found the game very educative, and also a fun, a fun game to play and to learn at the same time, which was something that they really appreciated during this session.

Gill Phillips 34:12

Do these men normally play games? Would they play card games? Or how would it compare with that?

Alice Ladur 34:19

They had a game that is commonly played in the villages or generally within the Ugandan setting, Ludo. And that's a fun game just to pass time, more of a pleasure game. But this was a very fast, educative game they had within this context. So it was also interesting to hear their feedback of what they thought at the beginning. And then after they had engaged with the game.

Gill Phillips 34:49

It's fascinating. It is.

Alice Ladur 34:51

Yeah, and one of them says that "I like the way the game was designed, and how it communicates the message. It's not just a mere game for keeping people busy. This one keeps you busy, but you learn something".

Gill Phillips 35:06

So, educational.

Alice Ladur 35:07

Yeah.

Gill Phillips 35:08

Very interesting and very rewarding feedback, I think.

Alice Ladur 35:11

We were keen to hear their feedback given that this was the very first time we had this game in the community, and specifically looking at maternal health, pregnancy and childbirth. So we wanted to hear their perceptions, and also to observe some of the immediate behavioural aspects after engaging with the game.

Gill Phillips 35:34

And I think you'd said as well that they were expecting more of an element of competition. And then they learnt that actually, if they all work together, then it was about improving the maternal outcomes. And that was what the real win in the situation was?

Alice Ladur 35:49

You know, why this game was different from the games that are usually played, was because the games that have fondly played in the communities are competition based. So again, being the very first of its kind, they thought it would end in one team winning, while the other team losing. But within this context, we were careful to reinforce that we all win when we promote safe motherhood for all.

Gill Phillips 36:19

That's what matters.

Alice Ladur 36:21

That's what matters, yeah. Another thought ... when they were reinforcing the aspects around education, one of them mentioned that "the game gives room for everyone to share their mind and encourages participation, you think better as one is talking. And I think I learned more from my colleagues here". So it really reinforces the aspect around Whose Shoes creating safe spaces to reflect and share experiences and learn from each other, which was one of the main highlights for me that during the fieldwork was that it gave opportunities for men, or for the participants to think individually about their own actions in terms of maternal health, or pregnancy and childbirth, and also collectively around the inequities and social structures, fuelling some of the poor maternal health outcomes. So having this safe space to think through individual actions and community actions, going forward is a good opportunity to break down some of the barriers, and also to demand for change.

Gill Phillips 37:38

Demand for change, yeah. So I'm personally thrilled with how far this got in such a short time and what a positive response there was. And I think Twitter and people like Edwin, in particular, such a supporter in terms of keeping me in the picture with what was happening. And then I was thrilled to see your article published in the BMC. So "Whose Shoes - can an educational board game engage Ugandan men in pregnancy and childbirth?" Well, clearly yes, it can. And I can attach that into the programme notes for our episode. But have you got any more plans to write up about the research that you've done Alice, or what might be the next steps as well?

Alice Ladur 38:21

So the next steps is to complete the write up of the Ugandan study. And also to share the results widely. I believe that our discussion today has been a snapshot of the entire interviews and experiences, exciting experiences I had in Uganda, while implementing the Whose Shoes board game as a health promotional tool. So I believe that there is a lot more to share, and also to learn through the entire process and experience.

Gill Phillips 38:56

And that's fantastic. I'm so thrilled to be able to capture, you know, as you say, a snapshot of where we've got to at the moment. And actually, I think for people to be able to hear your voice, you know, in talking passionately about your project and your work and so on. I suppose with the podcast series, generally, I'm really trying to make things happen for people, for the outcomes that we're all hoping to achieve, for the kind of understanding of people, in humanity and how it's not that different in different topics or different parts of the world. We're all united by this humanity. So if somebody somewhere magically could come up with some funding for a longer-term study or to take some of these outcomes forward, it seems that there's just so much scope there if a few short sessions as part of a research topic could shift attitudes to that extent.

Alice Ladur 39:45

Yeah, this study was a great eye opener, because it was a feasibility study so you were testing out a number of aspects around the Whose Shoes board game and I believe that there is opportunity to expand this a bit more and to explore or to look at long term behavioural aspects of the Whose Shoes board game in maternity care.

Gill Phillips 40:12

And you went on to win the Vice Chancellors award. That was fantastic and very recent. So I think if if we hadn't had our tickly coughs, and we've recorded this a few months ago, then perhaps we wouldn't know about that and be able to talk about that and congratulate you here on the podcast.

Alice Ladur 40:29

Thank you.

Alice Ladur 40:30

The highlight of the PhD... the whole fieldwork process in Uganda was seeing women, pregnant women coming back to access antenatal care services a lot happier and a lot relaxed. And I had opportunity to ask them some of these experiences during the focus group discussions, and they attributed this to the men knowing about the importance of antenatal care. And they didn't have to explain in greater depth, why they needed to seek care when they were not physically sick or presenting any symptoms. So to me, that was really special. And it summed up the whole field work. And the whole use of adapting Whose Shoes board game to the Ugandan context that yes, this is an opportunity for us to explore in terms of the use of educational board games in health promotion, and specifically in maternity services.

Gill Phillips 41:44

That is a tremendous result! And I'd like to say that I'd like to support you in going forward in whatever way there might be, an opportunity for you to extend this work and to continue this impact.

Alice Ladur 41:56

Thank you.

Gill Phillips 41:57

So thank you, Dr. Alice Ladur. I'm so proud of you. And thank you for joining me on this podcast. I'm glad your tickly cough's better and let's keep in touch and see where you go from here. You're amazing.

Alice Ladur 42:09

Thank you for this opportunity. I've enjoyed having this discussion.

Gill Phillips 42:14

I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favourite podcast platform. And please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me. And let's hope that together, we can make a difference.

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14. Dr. Alice Ladur - Using Whose Shoes in PhD work with men in Uganda to improve maternity outcomes - Wild Card - Whose Shoes?

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This is a very special podcast for me - a story I was really keen to capture as it deserves a large audience.Today I am speaking to Dr Alice Ladur, who has used my Whose Shoes board game in her PhD project in Uganda, working with men to bring abou...

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Episode 15 - #WildObs - Christmas special with  #MatExp co-founder, #FabObs Flo Wilcock

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Episode 15 - #WildObs - Christmas special with  #MatExp co-founder, #FabObs Flo Wilcock

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15. #WildObs - Gill n #FabObs Flo - Christmas Special 2021 - Wild Card - Whose Shoes?

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Welcome to WildObs – A Mash-up of ‘The Obs Pod’ and ‘Wild Card - Whose Shoes’ podcasts as a 2021 Christmas special !!#MatExp co-founders Gill Phillips, creator of ‘Whose Shoes’ and my good friend #FabObs Florence Wilcock, chatting about our adv...

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Episode 19 - Gaynor Armstrong and Sarah-Jane Pedler – Midwifery Matters

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Episode 19 - Gaynor Armstrong and Sarah-Jane Pedler – Midwifery Matters

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Sarah-Jane Pedler and Gaynor Armstrong

Sat, 1/22 1:55PM * 43:40
SUMMARY KEYWORDS
people, midwife, midwifery, conversations, role, gill, shoes, nhs, gaynor, women, challenging, maternity, career, important, pledges, team, support, collaboration, service, sarah
SPEAKERS
Gill Phillips, Sarah-Jane Pedler, Gaynor Armstrong

Gill Phillips 00:11
My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to coproduction. I was named as an HSJ 100 Wild Card, and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you. Today's podcast is quite innovative, I think. I'm delighted to bring together two people who are literally meeting for the first time today. They've never previously seen each other or spoken in any way. But they share a passion for midwifery. A true passion in that they believe being a midwife is the best job in the world! So what a wonderful opportunity for them to meet and tell us why this is true. We're all really excited about it. So this is an #IntentionalCoffee podcast. What is an 'intentional coffee' I hear you ask? Well, last year I launched with Dr. Mary Salama, a wonderful paediatrician in Birmingham, the concept of an intentional coffee and intentional coffee is where you bring people together who you know will simply get on and have that special synergy. One plus one equals so much more than two. Sarah-Jane Pedler is the Lead Professional Midwifery Advocate at the Royal Cornwall Hospitals NHS Trust. I've known Sarah-Jane for many years as the leading #MatExp (that's maternity experience) xx champion who has run wonderful annual Whose Shoes workshops around all sorts of topics using true coproduction from start to finish. She also really impressed me with her innovation during the pandemic, bringing humanity and compassion to both women and families and to the maternity team, to support them. Gaynor Armstrong is Director of Midwifery at my local hospital trust, University Hospitals, Coventry and Warwickshire - equally passionate, equally level headed and practical. I've been working with Gaynor to bring together a truly innovative Whose Shoes event around wellbeing, exploring how both staff and women and families have been affected by the pandemic and providing an opportunity for reflection and a chance to move forward strongly together. So it is my huge pleasure to bring you two dynamos together and see where the conversation might lead. I'm hoping it will have a really long lasting impact, inspiring more people to take up midwifery as a career and also forging some new links between your teams. Perhaps you could start by telling us a little bit more about yourself, and what's important to you. Let's start with Sarah-Jane in Cornwall, and then come back to Gaynor in Coventry, if that's okay.

Sarah-Jane Pedler 03:09
Oh, that's such a lovely introduction to us both, Gill and it's really exciting. I absolutely love the work that you do. I think you're such an innovative, and just really energising for all of us in the NHS, and certainly we've found that in maternity services. When I came into midwifery 19 years ago, it was a second career for me back then. I was in my 30s as a working mum and I worked for a long time as a frontline midwife. During my career I've taken on roles as a supervisor of midwives, have been our practice development midwife. I'm a midwifery ambassador, international leadership management coach and currently our full time Lead Professional Midwifery Advocate and I'll shorten that to 'PMA' - a bit quicker!

Gill Phillips 03:52
So PMA, because we need an acronym here. We don't like acronyms, but we need one here!

Sarah-Jane Pedler 03:57
It's a bit of a mouthful otherwise, isn't it? And I'm also in my final year doing my dissertation for my MBA in senior leadership and healthcare. As a midwifery advocate, I put a lot of consideration into what it means to advocate for midwifery, both in terms of midwifery as a career choice but also in terms of retaining midwives in this amazing profession that we are. So just as a very momentary thing, just to anchor for me where I am, I've got two direct quotes that I'd like to read befor e we move on to listen and hear from Gaynor. They're both direct quotes, one is from Charles Dickens, and from A Tale of Two Cities and one's from the International Confederation of Midwives. It's from their strategic plan, 2021-23. So Charles Dickens first. "It was the best of times. It was the worst of times. It was the age of wisdom. It was the age of foolishness. It was the epoch of belief. It was the epoch of incredulity. It was the season of light. It was the season of darkness. It was the spring of hope. It was the winter of despair. And then my other quote is, as I said, from the International Confederation of Midwives. And they've said that we need to foster and build the next generation of midwives, while leveraging the knowledge and the wisdom of older generations, fostering cross-generational learning. And their Strategic Priority 3 is to foster a movement for midwifery, enabling and strengthening partnerships, advocacy, communication, and women's voices at the centre. So for me advocating for midwifery is about seeking authentic hope, and seeking the synergy of new knowledge and the wisdom of experience.

Gill Phillips 05:52
That's brilliant. And it's definitely the first time we've had Charles Dickens on the podcast. What an amazing start. And I love those quotes. And I love the idea of building a movement of midwifery because hey, that's what we're doing with #MatExp isn't it?And for the people that the midwives serve, and the whole maternity teams because everybody's got to work together. So thank you for that powerful start Sarah-Jane. Hi, Gaynor, say hello to Sarah-Jane - you haven't met before now!

Gaynor Armstrong 06:20
Hi, Sarah Jones really nice to meet with you. And Gill's told me so much about you already. I do feel like I already know you. Besides, Gill was sharing some of the experiences that she's had of working with you and felt that we'd get along. And it sounds to me like we already have quite a lot in common.

Sarah-Jane Pedler 06:40

Absolutely.

Gill Phillips 06:42
Gaynor, It wasn't the first career for you either, was it?

Gaynor Armstrong 06:46
No, that's what I mean. So, before becoming a midwife, I very much had a career in the financial services industry where I'd worked for 13 years, whilst having my children during that time as well. So, you know, I'd had the opportunity of joining a very well known building society that was local to me. And yeah, being supported very much so in that role, but then realizing it really wasn't something that I'd planned to do, but more stumbled across. So then I went in search of my dream after having my second daughter, and I said ... I think my husband thought I was having some sort of midlife crisis ... because I decided then to undertake an 'Access to health care' course, having left school with GCSEs back in the 1980s. And similar to yourself, I had two young children then, but I decided to join a hospital as a healthcare support worker, because I felt that I needed to understand how working in health care would fit with having a very young family, with my daughter being only 18 months old at the time. So I worked firstly, in ... just outside critical care, actually, on a very heavy ward. And I very quickly learned how hard nurses work and worked there for a very short time before I was offered a post in maternity. Obviously, this was my ambition and dream to go and work in that department. And I think the team felt I had very rose-tinted glasses, because it was a real dream of mine to work there. And I loved going to work every day, always with a smile on my face and a skip in my step. So I then kind of thought, right, this is the next step to take and obviously was in contact with universities to get a placement and was very fortunate to be supported with secondment from that trust to undertake my midwifery training. And then I had the opportunity to have some wonderful mentors, who one of them Sandra, who always tells me now that she taught me everything I know. And she really did, and some great midwifery experience. So yeah, started on my journey very much like you and I've had various different experiences throughout my career as well. So having been my first 12 months as a hospital midwife, then was asked to go out into community as an integrated midwife. So very much delivering continuity of carer. I had my own caseload two days a week community, and two shifts in the hospital and I saw, probably about 75% actually, throughout the hospital experience for those women. And I did that for about five years before realising I wanted to do more and influence change a little more. So I left that trust to go to another to work as a Labour Ward Co-ordinator, which was a huge step. And I really loved what I did, and felt that I could support midwives as well as supporting the women and their families to get their birth choices but also for midwives. To succeed and become the midwives that they wanted to be with training and support, and then realised, again that that wasn't enough and felt I needed a new challenge. So I left that role to go into patient safety, where I remained for about five years before coming into this role. So I joined UHCW as the Women's and Children's Risk Manager before then taking on the role as the Interim Head of Midwifery and subsequently obviously Director of Midwifery. So I think the thing for me, my biggest passion has always been that I wanted to influence change. And I've done that on an individual basis with women and with midwives as a mentor, as a coach, and also as an advocate for both women and for staff. But then, I don't see my role any different now. It's just I'm doing it on a bigger scale. So I can advocate for more women in this role. And that's my honest belief. And that's why I do this job. And that's what helps me sleep at night as well. So yeah, very similar stories that we ... our career journey has been quite similar in that respect, which is, it's just so heartwarming for I think, then others to see that ... it might not have been your profession of choice when you left school or education. But actually, that doesn't stop you. And I've done a talk to maternity support workers only last year. And I said, the thing for me was actually realising that you should never accept no as the first answer.

Gill Phillips 11:32
Just find a different way.

Sarah-Jane Pedler 11:33
It's so interesting, isn't it? Because I think for a while midwifery stopped having lots of different ways that people could get into midwifery. And we're gradually opening up in different ways now, aren't we way, the only route isn't just that you have to go and do a full time degree in midwifery. I think that's so important. Because although there's plenty of people who would want to do it that way, that isn't the right way for everybody. And that isn't actually sustainable and possible for everybody. So one of the things for me that I'm so excited to see that we're looking back at getting people who are nurses being able to train as midwives, people being able to become a maternity support worker, and then get funded to train as a midwife. I think it's a real barrier for people who have families or who can't afford to go to university without working alongside it. So I think it's really exciting to see that that's been recognized, because that's how we're going to move forward, isn't it? When I look at so many of our problems at work, so much of it is down to staffing, there will be obvious other issues, but staffing is such a huge crux of everything, isn't it? If you don't have enough midwives, everything else cannot fall into place, you can't create that people-centered ethos that we want to create you. You can't create that culture that we're really looking to create where people are cared about their well being that really matters. It creates issues for people on the frontline, it creates issues for everybody who's line managing, and it creates issues for leadership all the way up. So I think that's one of the most essential things that I can see gradually shifting and changing in terms of that kind of recruiting people in and it's something I'm really passionate about. Anyway, it's part of that journey that I've taken, I came into midwifery. So women and people-centered thinking that I would always really want to be that frontline midwife. And as my career went on, I think particularly when I became a supervisor of midwives, I started to get more and more passion for well, actually, we don't get it right for our workforce, then they cannot get it right for those that they care for. You know, we rightly put women and people at the centre of our care. But if someone isn't then stepping back from that, and putting the workforce at the centre of their care, then you get this kind of domino effect, I think of things gradually being displaced, and a sense of real complexity in how we provide the care that we want to provide. And I think in terms of really maintaining and holding on that sort of sustainability of those who we do manage to recruit into the role. We're lucky we you know, now we're working for an NHS that's really looking to shift and change its culture, but that's deeply entrenched, isn't it? That very strong sense of being stoic, of working hard of not taking a break, of not saying that you're struggling? That's a big thing to shift. And I think the more we get that combination of people who are fresh from school, with their lovely fresh approach that they have, but also combined by that - people who have life experience coming into it as a second career and that combination, I think that's where we start to unlock the ability to have a much wider view on what it's like to be a midwife and what it's like to be in a different role. And we've got so many different roles that we can have, and be, and do, far more than I think, certainly, that I've ever seen. And I think that's, you know, partly down to the leadership as well, isn't it where I am, we've been really lucky to have leadership that is really looking to build more interesting roles to create those kinds of specialist roles. And that obviously, gives its complexity because you're taking frontline staff out of the frontline working to do that as well. So you've got to be able to keep replenishing them. So bringing people into this as a career, it's where it all starts, isn't it?

Gill Phillips 15:50
And I think this is where this episode is exciting for me in terms of building really strongly on the fantastic chat that I had with Professor Lesley Page, humanising birth. Now for me with Whose Shoes you know, people can think that Whose Shoes is about - and it is - getting people to think more what it's like to be, in the context of maternity, the women and families or in the wider work that we do, perhaps the people in the community or the patients and so on. But coming back to Gaynor's point, unless people have got that skip in their step, unless they actually want to join the profession in the first place, and then stay engaged, stay innovative, you know, the love and the lemons and all the reasons that you came into the profession in the first place, wanting to be women-centered ... not just being ground down. So it's trying to build those conversations. We're calling this episode 'Midwifery Matters'. I can see that both of you are passionate about being midwives. Let's get some of that energy in terms of stripping away all the 'stuff'. And Whose Shoes tries to strip away the stuff. We can do plenty of 'stuff', can't we? Guidelines, targets, and all the things that are really, really important, but which can change the focus in a way, and start to move away from what really matters to people. You can move away from just the central, the midwife, the mother, the baby... what is so awesome about that?

Gaynor Armstrong 17:17
I think the thing for me as well as I think about conversations that I've had with midwives before and when we look at, in particular, where we have positive or negative feedback from women about the care that they've had, and I think this is where Whose Shoes is brilliant, because getting feedback, it doesn't matter in what context. But that feedback is so important for us to shape, what we do and how we improve. Whether that is that we continue because we found a good way of doing it or whether it's that we need to make a change, because it doesn't work in that way. And I think how I've then always said to midwives, when I've had those one to one conversations, is that we have to remember, we are so privileged to be involved in this part of a woman's life and family's journey into parenthood, that that might only be maybe once, twice, three times for some women in their entire lifetime. So how lucky we are to have been a part of that. Now when we provide really good care, and we are advocates and supporting women, they never ever forget their midwife, their relationship with that person. And when we talk about continuity of carer, it is all about the relationship of care, isn't it? And I think that's the bit for me that is so precious about being a midwife and what makes it so different from some other health care professionals, that we have this very intense period of time that we spend with the woman, her partner and her extended family. And I remember being a community midwife and starting off by seeing one lady one partner, and then by the time that I finished, it will be that it was five years later, they were embarking on their third pregnancy when you then get to meet baby number one or baby number two in a very different way. And they are there talking about this - "This is the lady who looked after mummy when you were in her tummy" and having those conversations and the sense of pride that they describe you. And I know I told you Gill about having recently had Sky installed when I'd moved house, and the chap said to me, "what is it you do for a living?", and I thought, why is he asking that, that's really strange. And I said ooh, I'm ... because I'd said I work for the NHS. And I said ooh, I'm a midwife and he said I looked after my wife when she had a baby and "I knew it was you but I didn't want say" he said she absolutely thought you were great. I was, I was so touched and that actually meant so much to me. And then he told me that his daughter was now 13 years old, then realised that realisation of how families move on, but we don't necessarily because this is our day to day, what we do and who we are. And I do think it is who we are. I do think that is part of it, that when I describe myself as a being a midwife, I forget that its a role - it is who I am. And I'm still as passionate as that first day when I say, you walk into work with a smile on your face and skipping a step. Despite the challenges that we currently have, I absolutely love what I do and wouldn't change that.

Sarah-Jane Pedler 20:43
And how many careers can you have such a multitude of different aspects to it?

Gaynor Armstrong 20:49
Yeah

Sarah-Jane Pedler 20:49
As a midwife, you, you have this opportunity to ... you're in service, you are able to completely serve your community, which for me, was a massive part of it. And certainly in the conversations I have with so many of my colleagues, that service element, that being such an integral part of the community, is really important. And I think community during COVID has really taught us more and more, brought home that sense of community and how important it is to feel part of your community, and that you're doing something of real value for your community. So I think that's an amazing thing that we do. But also we've got all of these different skills that we have to develop as a midwife, you're looking after, on the whole 40 weeks of pregnancy, and then the birth, and then the beyond. And all the different things. You could have somebody coming to you who's really fit, healthy and well ... you've got somebody who has all sorts of complications in their own wellbeing before they became pregnant, people who have lost pregnancy and have had to cope with all of the myriad of the distress of losing their pregnancy, there are so many different elements to what we do, and the skills that we have to develop. And it's a constant, constant evolving learning. And that's one of the things I think that it keeps it so fresh, and so constantly challenging, but in a wonderful way, challenging. You know, we talk a lot about the complex challenges of midwifery. And I think it's very vocal in the press around that complexity of maternity services. But it's also really important that we focus on the complexity of midwifery in the most wonderful sense. All the different things that we have to learn and do and develop, and also the way that we can shift and change. So if you feel that you need refreshing in some way, then you're suddenly able to think, "Okay, well, I'm gonna develop skills in a whole different direction". And the fact that every day something is gonna happen, it's completely different, you will never be able to turn up and just give exactly the same as you did the day before, you've always got something that you need to find within yourself, that refreshed energy. It's interesting talking with colleagues of mine, and also a bit involved in a few groups that are a national group. So we have some really interesting conversations nationally as well around ...how do you stay refreshed? And what do you do? how to keep that kind of appreciative inquiry? Or the 'what if it DOES work out'? approach, which I think I sense in so many people that are still in love with their career, or the years later, there are people who have that ability to, to think well, okay, well, what next in the best possible sense? Or how do we make the best out of this, but in a genuine way, because, you know, we have to be really genuine, it is a challenge. It's a challenging time in NHS services as a whole. But there are always ways and forms and one of the things that I love is that in my role, and I feel so lucky to work with people who, if they're starting to feel like "I don't know how to look at it through that lens that I've always looked at it through" then you can start to strip back with people and start to really get down to "what's your sense of purpose? What brought you to it in the first place? Where's your' what matters to me', where's your sense of purpose as to why you want to be a midwife now in everything that's going on, and I love that when you start to strip the layers back of everything that's going on and everything that's challenging?" And when you get somebody to that core of what they feel their purpose is , you can just see it, you know, you see their posture change, their voice shifts, their eyes lighten up. It's just that - how do you strip that away and keep people at that stage when it you know ... not just people who've been in it for a long time, you know, we have people who are in their vocation for one or two years who find it challenging and maybe not exactly what they thought it would be to, especially if they come into into a pandemic which is, you know, nothing at all that any of us could ever envisage. And it's taken energy away from where we were going, we've all had to put this huge amount of energy in a completely different direction. And what from your ... both ...because I know Gill, you always seem to manage to keep incredibly energised and upbeat. You know, what do you do? How do you ... how do you keep that going for you? is not always easy. Is it? And like you say, it has to be genuine, I can see that Gaynor has got a really good answer. Have you Gaynor?

Gaynor Armstrong 25:29
I was just gonna say I think the thing is, you know, it's really important, isn't it? In order for you to remain positive, it's, it's good to have people of a similar nature around you as well. So surrounding yourself with people who also have those similarities in our personality types. Because I think when you are trying to be supportive of your colleagues, your team, your family, as well, who are really anxious at this difficult time. And I think ... I know Gill, we've had a conversation because one of the things we wanted to do with the Whose Shoes is actually bring together the staff and the women so that there is a shared understanding of the pressures that that has placed upon us, when we have got worries about what's going on at home as well as at work. And I think, in order for us to support people, that does require for us to be energised, isn't it because I think that's where ... if we are not able to show them the way through some of these challenging times. That thing with Florence Nightingale and the lamp with the shining light, you know, that sometimes we have to be that person, don't we, so that we can support others and lead the way to continue with that. And I think it is that we have to have people around us that are like minded. And if there aren't people around us, then it's to seek those people out through whatever means we can, both inside and outside of our working life. For me, it's really important that we have what we call headspace. We were in a discussion with our senior team yesterday, and saying that sometimes the pressures placed upon us ... in particular, when you get into any management role within healthcare or industries at the moment. Headspace is so important, isn't it and our health and well being. And it's about having those key conversations with our team, even if it is on a very ad hoc basis. "Hi, how are you today?", you know, "how's things going?" but genuinely then having the time and opportunity to be able to hear what's being said? I'm not saying that you always have the solution. And obviously, I think at the moment with the challenges that you've already mentioned, Sarah-Jane, about the staffing. And I know this has been discussed on national, regional as well as local levels. And we can't get away from that. But it's actually letting the team know what we're doing about it and how we're trying to address some of these challenges currently. It's not to say that we will always have the answer either. But I think being honest, being open and sharing that, but also engaging and asking people to get involved with you. So if any way that they want to get involved in the recruitment process, and share their passion and dedication for the role as well. It just reinforces how they're feeling. And that then has that knock on effect for others as well. And I think that's the bit that's important for me is we have got so many people that work with us, as our colleagues and friends and peers that do feel still so passionately and strongly about midwifery. And I think sometimes this is the reason why it then can be quite distressing. And, you know, it's so disheartening currently, isn't it with the challenges that we face?

Sarah-Jane Pedler 29:09
And I think it's in that collaboration, isn't it Gaynor, or that we get our thanks? And I think it's one of the things I love about midwifery as a profession because the collaboration is always there. When I look back you know, we talk about collaborating now very much like kind of nationally across different services. We talk a lot about collaborating with our service user voice, and we've got we're lucky in Cornwall, we've got an amazing Maternity Voices Partnership.

Gill Phillips 29:38
Oh, wait, where did that come from?

Sarah-Jane Pedler 29:42
Well, it would have always come, but we did launch it, didn't we Gill, at our Whose Shoes.

Gill Phillips 29:47
We did! That's exciting.

Sarah-Jane Pedler 29:48
And you know, we've just done ... Georgie Watson and Nicki Burnett, who are just absolutely phenomenal, leading Maternity Voices Partnership ... it's now Nicki Burnett has taken over the chair there. And actually, we have our Maternity Voices Partnership as a kind of thread through everything we do, you know, they are involved in our guidelines, in the language that we use, in our interviews, involved in every project where there needs to be any kind of service user voice. For example, at the moment, we're developing a pathway for people who choose ... their birth choice falls 'outside of guidelines'. But you know, we look at that from both perspectives. So we want to get it right for our service users. So we've got to have our service user voice in there. So our Maternity Voices Partnership is massively part of that. But also, we're trying to get it right for our workforce, because for them that we're in this constant shift andchange, aren't we ... how we would have spoken to our service users, how we were encouraged to speak is so different when I came into the profession 19 years ago, compared to now. And I love the direction that it's going. But the fact is, it is a shift and change for people. So we're developing this pathway together so that we kind of make sure that we look at education for our frontline staff as well, so that they feel they've got the skills that they need. And it's in that collaboration for me, I think is so wonderful. And we see it in every different stage, we see it on delivery suite in the conversations that you might have when you come out of your room, and you just kind of run it by one of your senior colleagues like "this is what my plan is, what do you think? what would you do?", so the simplest of collaborative conversations. And I think, again, it's one of those careers, one of those vocations that really empowers us, and also demands us to be highly highly collaborative, which ... as soon as you get into collaboration, and you get that energising, and you get that ... get someone else's view. And I think that that really helps us to stop us from kind of getting stagnant in what we do and stagnant in our view, or, "but I always do it this way". And that's essential, I think, to keep that refreshed energy. That's why I love working with people as well who, when people come from another trust or when they're newly qualified, or when they're students, or when they've gone into a new role and had to develop new skills. I love that, because the conversation starts to really shift and change. And you can see people sparking off each other. And it's that kind of ... that Whose Shoes approach as well, isn't it Gill, you know, where you're instigating things at all times, you're looking for that collaboration, but you're looking for people to not just teach each other something you already know. But when you get that third aspect where you both plan your view in, and then suddenly there's that lightbulb moment of actually there's something else that neither of us would have considered without talking to each other that wasn't even there that you didn't know. It's that unlocking of, of knowledge, I guess within us, and I think midwifery is one of those careers that really enables us to do that.

Gill Phillips 30:37
But ... it's lovely that you say that. And I know I've found one thing that I really, really love is the point at the live ... particularly the live ... I mean, virtual has been different ... the face to face Whose Shoes events, where we've sown the seed all the way through for people to make pledges. Now I've found now ... it's like you really, experience builds ... and someone will come up with an idea. And I can pretty much guarantee that I'll be able to add to the idea, either by, it might be easy, there might be somebody else in the room that pops up and says, "Hey, that was my idea!" And you think, well do it together then! But in terms of the collaboration and the network, and what you're both saying about that, find your own people, there will be somebody that's already doing that work. So it's less lonely. I mean, it's just so practical, because it saves time to find out what's already happening. Because you link with other people who've got the same passions as you and you can talk and you can develop together. So immediately when you were talking then, Sarah-Jane about developing a toolkit about working with women who want to have a birth that's perhaps outside formal guidelines. Now Flo. This is Florence Wilcock and the ObsPod has done an episode around working outside guidelines. So immediately, I can recommend a resource that you can listen to. And it will add to that conversation because it will be things that you've thought of, things that you haven't thought of, things that you think differently about, perhaps have a chat with Flo. And I think that's what's so special. So your earlier question - and I thought Gaynor's answer was brilliant ... You know, how do you keep going with energy? Well, of course you can't. And some of it might be a perception, you know, my lemons on Twitter, and sometimes you're really frustrated about something and I've had some big frustrations over the last couple of weeks when my emails weren't reliably arriving. And just, you know, we all have the stuff, but I think is the human approach and the connections - and I use the word 'friendships', not just colleagues - and you develop proper friendships through these things. Flo and I have done a 'Magic mates' podcast together. And that's how we feel. And you find people who add, coming back to my introduction when I thought two would be more than '1+1=2' and I almost feel I can back out of this now and just let the two of you run with it! Because that's, you know ... you just bring people together and connect. And the other really, really fantastic thing that we've got that I wanted to share with both of you... So last Sunday, we've launched the #MatExp campaign page on Fab NHS Stuff. Now that's been overdue for years, really, you know, we've looked for a platform whereby ... supposing from either of your work, whether it's a toolkit that you're developing, or whether it's a pledge that's come from a Whose Shoes workshop, which might be a little thing, or it might be a big thing, or it might grow into a bigger thing, you know, to have somewhere to regularly be able to collect stuff. That's what we're now doing. So take a look, they literally put it together last weekend, and they've got 10, 'starter' things. Well, all of the 10 Starter things are fantastic. But we've now got a channel, all of us, and this belongs to all of us, that we can add little bits of good practice. And it could be the first place that you look, not just to find out a resource, but also a connection, someone who's the person behind it, who's the person who's passionate about that. So it's a very exciting time, I think.

Sarah-Jane Pedler 36:21
I LOVEthat idea, Gill, and also, because there's so many people doing amazing things isn't there, you know, across the whole country. And also, I mean, I don't know whether it's just particularly true of NHS services. I mean ... I'm studying an MBA, and because it has that business aspect, we're always been encouraged to look outside of the NHS and to look at business and what we can bring into the NHS from business thinking. But one of the things that I see so much in the NHS is this generosity of sharing knowledge, there's not a, "I'm holding on to that! That's my idea, I don't want to share that, we want want the credit for that!". I know that that, of course still exists. But the people I talk to, they're so generous with their knowledge, and they're so generous with wanting other areas to grow and share and develop. I think that comes back to that whole thing that of course, because we're in service, because if you help other people to grow, then really all you're doing is making sure that the people in their community get a much better service. So maybe, and that's underpinned by that kind of whole altruistic attitude that we have underneath it all. But the idea that you could just go on to a platform, and that you can think well, who's come up with something brilliant, I can see and then talk to, I think that's a wonderful idea. And I think, because you have so many people who were doing so many different projects, and certainly from Whose Shoes perspective, it generated so many different, you know, a very different and fresh way of thinking in the NHS, a very different way. Again, it's that collaborative thinking, isn't it, but in that very non-hierarchical way. And it's one of the things that I loved about Whose Shoes because it has, you know, we have done several ... we're a bit a bit stunted due to COVID, but we'll continue on. But that's about taking the hierarchy out of it so that people feel the freedom and they're not afraid to speak up and they're not afraid to share their idea. Well, of course, if you've got a platform like that, then anybody who maybe would feel intimidated to share, can maybe feel "well, I've got a voice, I can share that too".

Gaynor Armstrong 38:25
I was gonna say I mean, again, you know, another similarity that we have i said that on Friday, I've got my last exam for my MBA. It's been dragged out because of COVID. But thankfully, it's the very last one, but doing Healthcare Management and I was thinking when you were talking earlier, Sarah-Jane, some of this with collaboration really is around actually the different motivational factors, what makes people want to make these changes whether that's a service user or whether it is a member of our team or whether it's us personally as individuals, we all have different intrinsic factors that make us then think ..."well actually, I'm really going to run with this and I'm going to do it because actually it's so important to me". But on the other side of that is the fact that the feeling it gives you when you see others achieve and I know we often use, don't we, the acronym for TEAM, you know "together everybody achieves more". And I think there is that thing that when it is that you're in these positions, whether it is like yourself as a PMA, whether it's in line management or whether it is as that midwife supporting the woman in a room, but we do it collectively as a team approach don't we? But we feel so much better when we've empowered others to do that as well. So you know everything that you've just said, I think is so absolutely right but different reasons why people will be motivated to do different things. And I think what the Whose Shoes has done for us before here at UHCW is actually bring all those ideas together, isn't it? And actually, it then gives us ... as part of the pledges at the end, you know, we all have that same commitment to make that change, and to make a difference. And I think that is so important for us in our roles for the women, the service, but also for the team that we're supporting as well.

Sarah-Jane Pedler 40:23
And I think saying that we're a team, that's a huge part of what we do, isn't it and for me, it's one of the hugest privileges is that sense of team, when you're a midwife. When you work in maternity services, you're working in the most incredible partnership as a team, in so many different ways. It might be the team, on the day out in the community, or in the hospital, it might be within a leadership team, it might be across a national team, who are looking to create direction, we have the ability to have these highly functioning teams. And I think that's one of the most beautiful aspects for me, and I know beautiful is a strange word to use. But for me, team working is one of the most beautiful things you can ever, ever bring to your life. That ability to be able to be shoulder to shoulder with people, to still challenge each other and challenge each other's thinking. But in a way that you bring alongside, that we're bringing people along with us when we challenge them, getting them to ... or you don't need to bring them along, because there's so on that page with you already, which is just how I feel having a conversation with you Gaynor and Gill today. It's just such a privilege.

Gill Phillips 41:34
So I think that's brought us to where we need to get to because I know people have got to go. But where are we? We've got curiosity. We've got listening, we've got teams, we've got collaboration, we've got pledges, so I'd like to think you two will pledge to speak to each other again after our initial #IntentionalCoffee. And we've got so many different aspects we could have talked about, but I think we've got through a lot really in terms of what matters and why midwifery matters. Final word, Gaynor or Sarah Jane?

Gaynor Armstrong 42:04
Yeah, can't wait to come and see you Sarah-Jane, I shall be down in Cornwall this year. I come every year, bring the dogs on their holiday.

Sarah-Jane Pedler 42:13
Oh wonderful. It would be nice to meet you and do this in person.

Gaynor Armstrong 42:18
Absolutely. So I'll have to let you know when I'm down. We're coming down at the end of June. So I'll let you know when I'm down. And if you are around, and if you're free, I'd love to catch up with you for actual coffee.

Sarah-Jane Pedler 42:31
Fabulous. I'd love that. Yeah. So much bringing us together.

Gaynor Armstrong 42:36
Absolutely. Absolutely. Thank you as always, Gill. It's just so great, like you said, just to be able to have this opportunity. And hopefully, it will help reignite the passion in the midwives and remember why they do what they do as well, which for me is so important right now.

Gill Phillips 42:54
I'm sure it will. I don't think I could have spoken to two better advocates for that. So thank you both so much.

Gaynor Armstrong 43:00
Oh, thank you. Thank you both of you. Take care now. See you.

Gill Phillips 43:04
Bye, Gaynor!

Sarah-Jane Pedler 43:07
Oh, she's fabulous!! :)

Gill Phillips 43:08
Yeah!

Sarah-Jane Pedler 43:09
Oh, I could have just talked to her all day - or listened to her all day. I had to keep remembering to say something and not just listen! :)

Gill Phillips 43:17
I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favourite podcast platform. And please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me. And let's hope that together we can make a difference.

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19. Midwifery Matters! - #Intentional coffee with Sarah-Jane Pedler and Gaynor Armstrong - Wild Card - Whose Shoes?

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In today's episode, I'm bringing together 2 people who are literally meeting for the 1st time. A world-exclusive #IntentionalCoffee podcast! For those who are old enough, think Cilla Black ...My podcast guests have never previously seen each other or spoken in any way. But they share a passion for ...

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Episode 20.  NHS England Shine A Light on Coproduction – 2022 with #FabObs Flo

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Episode 20.  NHS England Shine A Light on Coproduction – 2022 with #FabObs Flo

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& years of coproduction in 20 minutes - GO!

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0:11
My name is Gill Phillips, and I'm the creator of Whose Shoes, a popular approach to co-production. I was named as an HSJ 100 Wild Card, and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

Gill Phillips 0:45
The last couple of weeks have been busy and exciting. We've had some interesting invitations to work with NHS England, and showcase some of our Whose Shoes work and the impact it's having. It's been rewarding to find so many people who really care about co-production, and finding out what matters to people using health services. First, we did a 'Shine a light on co-production' session as part of a bi-monthly series organised by NHS England Experience of Care team. In terms of how best to use the opportunity, I really struggled with this one. I agreed to it three months in advance. But our work is a social movement rather than a project. So there's always something new happening. How could we know three months in advance what we want to talk about? Anyway, in the end, we delivered my ambition to make it super topical. And the Wild Card Whose Shoes podcast really helped with that. I'm just beginning to realize what a powerful resource it is in terms of being able to drop in, obviously, with permission, clips from people talking, and so on. Hang on in there. And I'll share some of the highlights in today's episode.

Gill Phillips 1:57
The second invitation was a lot more JFDI. And my ideas came together very quickly, as the topic was not so vast. And I didn't feel such a huge sense of responsibility in terms of doing justice to many years of work with input from so many amazing people. So what was this second opportunity? James Mountford, Director of National improvement strategy at NHS England, runs some lovely huddle sessions, bringing together a really caring and thoughtful group of mainly NHS people, and asked someone to be a theme leader for a discussion around a thought-provoking topic. So this month, it was me. My topic was "What does it mean to walk in someone's shoes? What are the benefits for healthcare professionals?" I loved it, and quickly noted some ideas down on my phone. Creativity is very subjective, isn't it?

Gill Phillips 2:55
And then a third invitation. A couple of days ago, I agreed to do a session for the NHS Graduate Management Trainee Scheme, looking back and reviewing the learning over the pandemic, and how we can all build the future together. Well, I absolutely love working with people at the start of their careers, and also getting involved in anything around clinical education because the work I've done with the Darzi fellows for many years now has been really exciting. So that was great. And then amongst all this, do you remember that podcast I had a few weeks ago with Dr. Terri Porrett, who runs fab NHS stuff with Roy Lilley? Well, live on the podcast, Terri and I came up with the lemon lightbulb idea of setting up a Fab NHS Stuff campaign page for #MatExp and Whose Shoes. Here's what she said:

Terri Porrett 3:48
Absolutely Gill, and I can make you a campaign page. All of this can go in one central place. So all we need to do when we want to refer people to this - one page, one campaign page and they will find everything with this hashtag on that one page can even sort it. It's so simple to do.

Gill Phillips 4:07
Well. Terri followed through on that pledge with amazing ... everything really - spontaneity, speed, big JFDI. And she has set us up with a Whose Shoes #MatExp campaign page. And every day they're adding and tweeting different examples of our work over the last few years. Check it out FAB NHS stuff. We're loving it, it's just brilliant. So it's been an energising and slightly exhausting start to 2022. So coming back to our shine a light on co-production session. What to do? I chatted it through with my magic mate Florence Wilcock, consultant obstetrician at Kingston hospital and my co-founder of #MatExp. Flo agreed to lead the session with me, which was brilliant, focusing on our #MatExp work (so that's maternity experience) and choosing just one element of the powerful co-production work that's been done by our wonderful JFDI #MatExp community pretty much every day since that fateful phone call back in 2014. These are just some highlights from our session. You can watch the whole presentation. I've just published it on my YouTube channel. And we'll provide a link in the program notes. But I've got to go the phone's ringing. I wonder who that is ...

Florence Wilcock 5:34
Hello, hello, my name is Florence. I'm an obstetrician at Kingston hospital. And I've been seeing all sorts of dementia workshops in Kent on Twitter. And I'm part of the London Clinical Network, looking at maternity experience, do you think Whose Shoes would work in maternity care?

Gill Phillips 5:57
Oh, that's a really interesting question. Kath Evans asked me that a while ago. And the rest, as they say is history. So how do we tell you about the work that we've been doing since June 2014? I think to start with giving you a taste of one of our workshops so this is a #MatExp workshop working with the fabulous maternity team in Brighton.

Gill Phillips 6:42
Yeah, I think you're gonna have to watch the YouTube video for this bit. Honestly, we had the most amazing session, Brighton and Hove Football Club. We had an absolutely fantastic team to work with everybody there, midwives, obstetricians, local charities mums and babies. A Baroness you name it, we just had the most amazing session and Flo took part in this dance after lunch and we had fantastic pledges, the kind of things we can follow up now with Fab NHS stuff. And it was on International Women's Day.

Voice of mum from the video: Positive change can be made.

Gill Phillips 7:22
That is co-production to us. So this approach has now got over 80 NHS Trusts using the Whose Shoes approach in maternity care. And we do work around lots of different topics as well, as you heard from Flo, the big work that we did around dementia care back in 2013-14, and since, was the driver to actually bring this approach into maternity services. And now we do virtual sessions as well. Although we do really prefer being in the room with judging the cake. It's more fun. For the session today, seven and a half years of co-production in 20 minutes. You ready, Flo?

Florence Wilcock 8:02
Yes, I am.

Gill Phillips 8:03
So it's got to be our biggest platform. Yeah, I'm not quite sure how it happened. It would need a whole different session to tell you about #MatExp the Musical on the main stage of NHS Expo, and our lovely baroness part of that. And all the different perspectives, which is such an important part of Whose Shoes, a tiny taster here.

Gill Phillips 8:50
A safe birth experience of your choice. That's pretty much what needs to happen in maternity care. So creativity, lemons and social media. Why do I call you one blog Flo, Flo?

Florence Wilcock 9:05
Because you asked me to write a blog, and I wasn't sure about it. And I was writing it. And my husband said, What are you doing? You're spending time doing this? You haven't got time, and I went," Okay, I'm just gonna do this one blog for Gill". And I did it and I never looked back. So I feel like working with Gill, has unleashed a bit of a creative side of me that I didn't really have the opportunity to think about in my kind of day to day, being an obstetrician. And this is more from writing a blog for Gill to writing a blog, or blogs for the BMJ, to stories. And now I have a podcast. So yeah, it's it's kind of grown from that one challenge to write one blog.

Gill Phillips 9:58
And your podcast is now ... how many episodes is it?

Florence Wilcock 10:03
I'm just recording episode 88 This week, yeah, 88.

Gill Phillips 10:07
And the other resource for people to dip into - all aspects of maternity care aimed at people who ... what I love Flo, is when you say sometimes, "you might think this is a bit odd". And it's just at the moment, I'm thinking "things were a bit odd". So good, you bring it alive for people. And that's what it's all about.

Florence Wilcock 10:26
Thank you.

Gill Phillips 10:27
So a big shout out from me for the ObsPod. And we went on to talk about pledges. And to show some examples. Some of this stuff obviously works better in the live presentation with pictures and slides, and so on. And so dip in and take a look at the video. So the challenge was, with all these rich examples of best practice, how to do justice in about 20 minutes, we decided to focus down on the middle of our three big maternity projects, nobody's patient, because that's about women and families who fall through gaps in services. And within that, we decided to focus on just one of the groups. It's like a sub theme of one of our projects. But it's just got so much energy at the moment. And this is the story we're trying to get across. This is not a project. It's a social movement, and the energy keeps going on and on. So I've been a nightmare with this presentation, trying to bring in things that are really topical. Now, because that gives you a flavor of just how something's always happening. So families with newborn babies in neonatal units. So Flo tell us a bit more about 'Nobody's patient'.

Florence Wilcock 11:36
So there was a challenge fund, and there was some money for doing a project in maternity experience. And we decided because they'd called it the MatExp Challenge Fund, which was really our hashtag, that we had better bid for it. And overnight, I didn't really have many thoughts. And then I woke up in the middle of the night, which is sometimes what happens with an idea. And it was based on one of our parent leaders, Leigh Kendall, who'd had a very premature baby, she had a life threatening illness herself. And her baby boy Hugo was in neonatal care when she was in intensive care. And I knew her story. And it suddenly made me think this is the opportunity to close those gaps, the gap between maternity services and neonatal services. So one is a paediatric department, the other is maternity department. Can we try and close those gaps? And while we were putting together the bids, which involved several parents, the London Clinical Network, my hospital, my local tertiary centre, St. George's, as well as Gill and Anna, who does our lovely graphics. Well, while doing that someone tweeted that they felt like nobody's patients, because they felt they were stuck between maternity and neonatal, they didn't belong to anyone. They were nobody's patient. And that's how we came up with the name.

Gill Phillips 13:06
We could invite loads of people to join us. We're all equals together. Today we happen to be hearing from Helen Calvert who again, like Leigh Kendall, was one of our amazing mum leaders, parent leaders within this work and not just being involved there. I use tye wild horses emoji every time I talk about Helen and the work that she did, so let's hear directly from Helen.

Helen Calvert 13:30
Theoretical mommy. Six days old, so fragile, so new. He'd been in intensive care. Now moved to HDU I wasn't too sure what I was meant to do. Still wired up, a drain in his tummy. I felt like a kind of theoretical mummy. Okay, come on, Mum. You change his nappy. The voice was abrupt, verging on snappy. You're going to have to learn how to do this, you know. At best, robustly encouraging. She was clearly the boss, years of experience under her belt. Or she didn't give a toss. Not a clue how I felt. I felt she wanted to kick my backside. I felt sick. I just wanted to hide. I turned around and walked off the ward. Did nobody see I was anxious or frightened? I started to feel guilty for behaving so badly. And no one suggested I shouldn't feel that way.

Helen Calvert 14:42
Hi, everyone. I'm Helen Calvert. And thank you so much to Gill Phillips for asking me to talk to you all about co-production today. My journey with Gill, co-production, Whose Shoes, maternity, all kinds of different campaigns and all kinds of experiences started when my youngest son was born with a congenital heart defect. He has hypoplastic left heart syndrome. And he's had three major surgeries and one minor, he's now seven years old, doing very well. And whilst I was in hospital with him in a paediatric hospital with him when he was about five months old, I really saw the lack of qualified breastfeeding support on paediatric wards and in paediatric hospitals. It was very noticeable. And I already had quite a substantial network of mums, because I was running a Facebook group for mums at the time. And it became apparent this was quite a widespread issue. So I took to Twitter, which I had never really used before, to find people in the breastfeeding world and in the paediatric world who were interested in this as an issue to discuss. And I met some amazing people, fantastic people working in all areas of infant feeding, lactation, paediatrics, put together a great network quite quickly, actually, there was a lot of enthusiasm. And that led to the hospital breastfeeding campaign, which I ran for a few years. And I had the privilege of handing that baton to the Hospital Infant Feeding Network, which has been set up by doctors Victoria Thomas, and Ilana Levine, if you're not aware of their work, do look up hifn.org. And they have a group on Facebook. So they are now leading the charge when it comes to infant feeding support on paediatrics. And that would not have happened if it wasn't for the conversations that I started having, and that people started having with each other through these networks. So that is just incredible to me, because I'm still in the Facebook group. I'm not involved in the campaigning any more, but I can see not just the progress that's being made. But the conversations that are happening, the people who are talking to each other from different hospitals, from different areas, from different professions, lactation consultants, private practice coming together with NHS. And it's just so wonderful to see the right people having these conversations together. So that's really exciting. Part of being on Twitter meant that I met Gill, and Flo who run the #MatExp campaign, maternity experience campaign, and I got heavily involved in that as well. And that's how I came across Gill's incredible Whose Shoes methodology, which I am just such a fan of, because it's all about bringing the right people together to have these conversations. And I think we all know that getting people in a room, getting the right voices together, hearing from a diverse group of people is important. But what Gil does, is there are no token voices in Whose Shoes. So if you are a group of parents, then the healthcare professional is not the token voice. If you're a group of doctors, the patient or the patient-parent is not the token voice. You're all equal. You all have valid things to say. And there's no hierarchy. It's just people all talking together with equal input. And it's the questions that are asked that really get you and really make you think differently about issues that you might have had strong views on for such a long time. So I really enjoyed that methodology and seeing how Gill worked and seeing how she just uses energy, goes where the energy is and just brings people together to have these vital conversations. And it was such a privilege to be able to connect her with Joanne Minford at Alder Hey Children's Hospital, which is where my son is looked after, and Whose Shoes came to Alder Hey, which was just incredible. And I was able to attend a day with the Whose Shoes game being played by board members, parents, nurses, janitorial staff, to everybody just exactly who you want just everybody in the room and having these really important discussions. And that was such a joy to see. And it's not that the parent voice isn't listened to in the NHS, it really is. But it's often on quite a tokenistic basis. And also, it's often quite piecemeal. But when we have these amazing networks and collaborations using things like Twitter and Facebook, it's not piecemeal, you can start to build a web and you can see the overlapping diagrams of who knows who and who's involved with who? And who should be talking to who? So we're not reinventing the wheel, we already know, Oh, yes. so and so's done that in another hospital that we put you in touch with them, which is just so powerful.

Gill Phillips 20:13
So I think if you thought that was powerful, that was Helen Calvert telling, if you imagine an iceberg, I'd say that the little snippet that she had there, in terms of both her contribution, it's the little tiny tip sticking above the water, she did so much. And also the story on what happened at Alder Hey and using regular Whose Shoes workshops, a series of them, and uniting behind the key messages, not what 'I think' anymore, but what 'we said', using the powerful graphic records, and ultimately leading to a new neonatal unit in Liverpool. That is a huge story. So those resources, Theoretical Mummy, one of the many poems, we've always used poems in Whose Shoes and as Helen said, crowdsourced scenarios, provocative, really trying to reach the parts that other tools perhaps don't reach in terms of the real issues that people need to talk about. And that's where, in a way, it got really exciting because we were able to build on the work that was originally done in Nobody's P atient and bring it bang up to date talking about Family Integrated Care, talking about the scenario that we wrote, for Whose Shoes all those years ago, when Family Integrated Care just seemed to be an innovative idyllic practice in Canada, whereby the parents of children in the neonatal ward are actually the primary carers. Our scenario included the words, "if parents are not fully involved in the care of their baby, what hope is there that they can explain things to their GP, health visitor, or other professionals when they finally go home". And again, a poem shared at the Shine a Light session, illustrating that when things don't join up, parents can feel that they are nobody's patient. Falling off the Pathway was a poem that you particularly love, I think Flo? Would you like to read that one for us?

Florence Wilcock 22:14
Absolutely. It's Falling off the Pathway. I was on the postnatal ward, my baby was in NNU. All too often, I simply hadn't a clue what I was I meant to do. You had to be in postnatal to order your food, about an hour before the meal, and then be there to actually eat it. It all became such a big deal. We mums we tried colluding, I'll stay in NNU. You order for me, I'll order for you. Hoping mums and babies could all get to feed. Needless to say, we didn't succeed. I kept missing meals spending time with my son. There simply wasn't time to get everything done. Sore from my caesarean, , I shuffle along, a fairly short corridor, unbelievably long, security requirements and hygiene demands, stopping at each door to wash my hands. I was literally going back and forth all day. Please, let's build a joined up pathway.

Gill Phillips 23:31
Thanks, Flo. And how ironic that that poem four years ago used the word 'pathway' . As Cristina and many people on the session will know, that's not my favorite word. So let's not go there.

Florence Wilcock 23:44
And I'm thinking that it's got security requirements - the door which we're going to come on and talk about in a moment,

Gill Phillips 23:53
As at yesterday. And that's got really exciting in terms of the coming of age, if you like of the podcast, in that we're now able to bring in clips directly from the podcast into our presentations. And so to bring the voices of Nadia and Rachel from last week in front of 150 people, in fact it was slightly more than that, wanting to learn about co-production at an NHS England shine a light session. So have you got any examples? I mean, just something simple that we could perhaps include as a clip, as what is co-production with parents.

Rachel Collum 24:31
We've got some really great work happening at the minute in our Parent Advisory Group in the Northeast. I think that's pretty much what the group is about, really. So we're very lucky that the care coordinators who we work with, absolutely want to know what parents not just think but what ideas they have and what they would like to see happening on the units. So they will often bring us a problem or an issue that they've seen parents struggling with who are currently on the unit and then they've basically asked us to run with it. So we'll have brainstorming sessions of things that we experienced. And that's nice as well, because there's so many different perspectives on the parent group. So you've got some people whose babies have left the unit very recently, others who were there during COVID, you've got some whose babies came home perfectly healthy, others whose babies came home with more complex needs, we've got parents of multiples, think we've got one set of parents whose baby sadly died. So you've got so many different perspectives. And we really work with the care coordinators. And it's not a tick box. And actually, I would say, kind of, we tell them what we would like to see happen, and they really take it on board. So from that we're developing what's been called a parent passport, which is the idea that when you come home, there are certain things you want to feel confident or empowered to do with your baby. There's been a lot of different iterations of these booklets or leaflets for coming home within the past, and they've been quite heavily competency based. So it's almost like a tick box discharge thing. You know, come on feed baby, come on, keep baby warm, Does mum know who to contact if baby's not breathing, this kind of thing. The feedback from the parent group has really been about moving away from that idea of competency, which feels quite judgmental when you're a parent and again, is about almost 'Are you capable of looking after your own child,?' which is not how you want to feel when you're about to come home after a 10 week stay on the NICU. So it's much more about what support is out there. What can we do to help parents while they're on the unit so that when they come home, they can feel more confident. So that's been a really completely co-produced booklet. Similarly to that there's another project I've been involved in, that's been completely parent-led to develop some aids to use on the neonatal unit, again, all about empowering parents and helping them ask medical staff the questions they want to ask and feel more involved with their baby. And that's been completely parent-led, like the ideas came from parents based on focus groups and interviews, the design of the aids was all driven by parents. And it's come through a few different iterations now. And each time it's gone back to parents to get their input before we fed it back into the unit. So what you end up with is a product developed by parents, for parents who really get it and get what that experience is like. And I think the parent advisory groups are just invaluable. And I know there's some brilliant ones across the country, because it means parents have been given a voice and an opportunity to get things out there on the unit like that.

Gill Phillips 27:36
That felt like a brilliant step forward in terms of sharing good practice and helping these people with lived experience and the other fantastic voices on the podcast, be heard in a wider audience. And obviously now in the YouTube video as well. So is this area the next #MatExp? It feels as if it is. The networks that are coming together around this area, people connecting with each other, sharing best practice, it just feels so exciting at the moment. So that was the reason we chose this filter, if you like to go down in terms of the session we're doing today. That's the Shine a light session. I don't want people to get lost here. And Flo was listening to last week's podcast with Nadia and Rachel ... ripples, lemon lightbulbs, direct outcomes . Flo,, what happened?

Florence Wilcock 28:27
So I was listening to the podcast on my way to work yesterday. So I often listen on my drive to work. And even though I've done all this co-production with you for years, as you've said, I love it when I hear something new. And they were talking about the fact that you have to press the buzzer to get into the neonatal unit because there's security. And it's important to protect the babies. And they had to press the buzzer, and therefore they had to wait for someone to let them in. So they're actually locked out from their own baby. And I had never thought about it in that way, ever. And they made a really simple suggestion that you could just have a fingerprint, so that when a baby was born, you record the parents fingerprint, and then the fingerprint could access them into the neonatal unit while their baby's there. And then when the baby's left, you can always remove that fingerprint, can't you? And I just thought, oh my god, I have never thought about the fact that you actually can't get through the door to see your own baby, you're locked out. And so I immediately tweeted Born Too Soon, which is our neonatal charity set up by an amazing woman called Pauline, who I know very well and who did the Nobody's Patient project with us. And I'm hoping that by tagging her in, we might be able to do something quickly about this where I work. But yeah, just a lightbulb for me. Even though you kind of think you're there and you're women-centered, and you've kind of learned everything there is to learn and then you realise, you still haven't. There's, there's always something new always.

Gill Phillips 30:11
And that's why I love working with you- Flo is so kind of honest and open to those conversations and possibilities. That for me is what it's all about. I want to do these podcasts, not just as a way of sharing stuff, but people say they want to listen to lived experience stories, I want them to listen, and I want them to do something about it. So that was yesterday.

Florence Wilcock 30:32
The other bit of the podcast that caught my attention was, I don't know if it was Rachel or Nadia talking about what his Family Integrated Care like for professionals, because one of the key things about our co-production is, it's not just about lived experience, it's not just about listening to the parents, it's about listening to the professionals. Because the professionals may have anxiety about changing things, letting go, allowing (I use that word in inverted commas), parents to do more, and what impact that will have on the safety of the babies or what their working practice is like. So co-production is about listening to all sides, not just one side. So it'd be wrong to think that replacing and bringing in lots of lived experience is the only answer, you've got to listen to everything.

Gill Phillips 31:33
And that obviously is central to Whose Shoes, our scenarios are from all perspectives. And that's the power of it, not just listening to any one group. But people suddenly realizing what it's like to be on the other side of the fence. It's something that comes up over and over again. And then almost a kind of feeling of relief and actually talking together. So an old tweet from Cristina, I found co-production, lived experience, but also listening to the stuff - but it is everyone - is catching fire. And it's exciting. We do have more formal outcomes as well. Depending on obviously the support we get with different things. So from our three big maternity projects, that's the generic maternity project. Nobody's patient, the one we're talking a little bit about today, and #MindNBody which is around perinatal mental health, we've managed to come up with three books of very, very transferable, adaptable case studies. Help us share them, they're not reaching people in the way that perhaps they could do. And sometimes if links are broken in, you've included that in goodness knows how many blogs, we all need to work together and make sure the whole thing joins up. So another very quick example, but one I'm so proud of, and Alice has been a guest on the podcast series already. Dr. Alice Ladur, who we connected with at one of our Whose Shoes workshops, we've translated and adapted and goodness knows what some of the cards into Luganda, the local language they use in Uganda. And Alice has just won the Vice Chancellors award at Bournemouth University for her PhD work using Whose Shoes with men in Uganda. And it's being written up at the moment on the Patient Safety Learning hub. Yes, we have loads and loads of examples. I've just tried to pick out a few highlights. So let's leave the women to finish our session. This is what MatExp is about.

Group of Mums:
Sarah -Jane challenged us to do a RAP,

To tell you about #MatExp and put it on the map

We mums are here to help lend a hand

To tell you how we feel and help you understand

.We do stuff together, we get things done.

Come and join us, #MatExp is fun

Gill Phillips 33:55
So again, that is probably one best to see on the video! And a big rallying call, "come and join us. #MatExp is fun". The FUNdamentals of building social movements. Fun sits right the way through it. We use lemons, what are you going to use? So that was the end of our presentation with NHS England and then we had a bit of fun around love and lemons with Cristina and the Experience of Care team. It's not quite the same if you can't see the enormous basket of lemons that Cristina brought back from Madeira.

Cristina Serrao 34:28
That's absolutely wonderful. And I'm going to butt in here just because I have been away for some people that don't know. And I've wanted to bring them upstairs to show how many my mum got into the suitcase that there is a whole load of lemons I'm going to count by the end, but I think yeah, I've definitely got about 15 lemons, so you've definitely had a massive influence on me. Thank you, Gill

Gill Phillips 34:49
And you Cristina, we love you.

Florence Wilcock 34:53
Those lemons are brilliant.

Gill Phillips 34:55
And I have now just finally passed my lemon stress ball to Mr. Whose Shoes so that he can go away and make what he wants of that. There was then a really good question and answer session, obviously, not just with us but with the other people on the session. I get asked specifically about taking Whose Shoes online - our virtual Whose Shoes sessions, so I'll just share my answer here.

Cristina Serrao 35:20
So that comes back to me. I've been busy looking at all the exciting stuff and trying to keep my excitement in check, which never very good with me. But anyway, guys, the number one question that came very, very early on - how'd you do it virtually? I want to get to you first Gill, - virtually , how did you have to change things?

Gill Phillips 35:39
Well, to be honest, to begin with, I didn't want to. For me, Whose Shoes was so much about a face to face approach and judging the cakes and bunting and hugs and so on. I thought I might actually take a break for a bit at the beginning of the pandemic, but other people had different ideas. So our graphic artists were very, very keen to kind of keep the approach going. And lo and behold, Mr. Whose Shoes came to the party, didn't yo?. So Colin is very good at the geeky techie stuff. And so it's a big challenge. And I think, basically, what was the success was trying to make sure that we substituted something equally good. So to set out and not try and do the same thing online. But to tap into the things that you could only do online. And it became a kind of minute by minute planning the Whose Shoes sessions we did. Colin managed to bring the board game online throwing the dice, bringing the scenarios up. But they weren't random. They couldn't be random. It was kind of like a planned conversation in terms of Well, how about this? And how about that. So we did six sessions, which I think were the biggest learning curve of our lives during the pandemic, where we were having the double aim of testing out the technology. So we did a series of six weekly sessions, with virtual Whose Shoes all around the pandemic. And really challenging topics, I've seen the chat, people who are disproportionately affected. One of our sessions was working with people from black and ethnic minority communities, getting them leading the sessions, doing it online. Honestly, I felt so far outside of my comfort zone. But the feedback was really good. And we did even manage to write it up in a report which is unheard of, for us. Now a little snippet into Whose Shoes - apparently the Scottish Government were interested. I don't know whether they were or not because we never heard from them. But it did mean that we actually used that as the excuse to write a report which wouldn't have happened otherwise. So sometimes we can like find ways around things, but the virtual sessions we've ended up doing around really sensitive topics. So for example, people sadly losing babies in pregnancy or stillbirth and so on. And we had two sessions lined up before the pandemic, which Flo was very, very much part of so Flo, you were live at the event in Colchester, a face to face event just before the pandemic March 2020. And it took us 10 months to do event number two with Gloucestershire, because we were so keen to think through every aspect, and the event in Gloucestershire virtually ended up being extraordinary in that who's in the room who's in this co-production. We had 15 bereaved couples, they could turn their cameras off, if they wanted to, they could be sitting there quietly having a hug behind the scenes, they could be commenting in the chat rather than having to do anything public whatsoever. We had the obvious midwives, obstetricians, families, but we also had the hospital chaplain, we had medical photographers, we had the local GP, we had charities, we had Sands UK. And then we had speakers from other parts of the country. Now, we couldn't have done that in quite the same way in the live event, because we were able to add extra viewpoints and perspectives. So sort of final message really is it's not easy. It's got to be very, very sensitively done, and it's exhausting. So we're so keen to get back into face to face workshops, and we've actually managed to do a few. So we've had a face to face workshop with a children's hospice recently. And the emotion in the room, you can imagine such a sensitive topic, but for people to be able to come together, face to face to talk. It was quite extraordinary. So bit of a longer answer, but it's it's subtle, and it's difficult. So Flo and I had a bit of a rant about co-production and making it real and how perhaps our Nobody's Patient work hasn't had as much impact as it could have had, how the resources that are already out in hospitals could be used a bit more effectively.

Florence Wilcock 39:46
So if you see a gap, and I'm hoping today will light a bit of a fire again, to take these things and run with it because yes, you're right. It's got some outcomes, but not nearly enough.

Gill Phillips 40:00
And that clearly has been like Nobody's Project potentially. And that is the challenge of co-production. So for a Whose Shoes workshop ... people love it, and a maternity unit can run a session because they're in control of it. But as soon as things start to be genuinely owned by different services, it's in danger of being Nobody's Project. It takes someone like Joanne Minford, the fantastic pediatrician up in Liverpool, me with the foresight to license their package across Liverpool Women's and Alder Hey. And for the chief executive support it - these are the kind of factors that actually make the magic outcomes like a new neonatal unit.

Helen Lee 40:42
Yeah, I was just gonna say, and absolutely we, it is about putting your money where your mouth is, and doing it. And we are doing some things nationally, to try and better align things. We're doing work with the Improvement Directorate to align co-production. So co-production needs to be at the heart of what we do, that we can't improve services if we're not doing that in partnership with people with lived experience. We've got a long way to go with that. But we are championing that and we are seeing some movement and we are seeing a shift nationally where other programmes, their interest is piqued. And they're asking questions about ... can you come and talk to us about that, because we would really like to understand a little bit more about it, and shift, shift it and we will get there. I have every confidence that we will get there. And it's just so amazing that we've had we've had 155 People join today. So fantastic. Thank you very much, everybody. It's been really interesting.

Cristina Serrao 41:36
A great way to start the year..

Gill Phillips 41:42
I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favorite podcast platform. And please leave a review. I tweet as @WhoseShoes, thank you for being on this journey with me. And let's hope that together we can make a difference.

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20. Shine A (Lemon) Light(bulb) on co-production - Wild Card - Whose Shoes?

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Gill Phillips and Florence Wilcock, co-founders of the powerful #fMatExp social movement, talk about the coproduction work they have done together since 2014. To make this manageable in 30 minutes, they choose a small but hugely important area of ...

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Episode 20: Shine A Lemon Lightbulb on Coproduction - NHS England - THE MOVIE!

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Episode 20: Shine A Lemon Lightbulb on Coproduction - NHS England - THE MOVIE!

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The podcast as a video!

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Shine a (Lemon) Light(bulb) on coproduction - the Whose Shoes #MatExp approach

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A force for good! Rachel shares her experience of bouncing back from despair and rocking it helping others and raising awareness of living with stomas.

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17. Rachel @Rocking2Stomas - Wild Card - Whose Shoes?

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Today’s guest, Rachel Jury, is winner of the National Diversity Award 2018 for positive role model for disability.She tweets as @Rocking2Stomas, and refers to herself as one of the community of ‘Double Baggers’. I’m looking forward to helping brea...

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Episode 18 - Nadia Leake and Rachel Collum – Family Integrated Care

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Episode 18 - Nadia Leake and Rachel Collum – Family Integrated Care

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parents, baby, home, child, neonatal, understand, integrated, GP, care, NICU, mum, helping, people, healthcare professionals, nurses

SPEAKERS
Gill Phillips, Rachel Collum, Nadia Leake

Gill Phillips 00:11
My name is Gill Phillips, and I'm the creator of Whose Shoes, a popular approach to coproduction. I was named as an HSJ 100 Wild Card and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

Gill Phillips 00:45
Today's podcast is a topic I've wanted to introduce right from beginning of this podcast series, as it's very close to my heart. Family integrated care makes such a difference to families, when their baby is in neonatal care. I didn't really know how to go about it, as I know such an amazing network of people working in this area. And I wanted to ask them all onto the podcast. But I only do one episode a week and there are lots of other topics to cover too. Anyway, the dilemma solved itself last week when an exciting opportunity came up, which we were all talking about, and then it naturally morphed into doing a podcast NOW and further episodes in the future, as there are so many different aspects and things are moving so fast. So the conclusion was, let's just jump in and see where it leads. Emails and tweets have been pinging back and forward. There's so much energy and so many wonderful people making a difference. And of course, it's usually best to start with the people with the lived experience, in this case, the parents. So today I'm delighted to welcome Nadia Leake and Rachel Collum, two mums who have had babies in neonatal care, and are doing amazing work in this area. So welcome, Rachel and Nadia, where shall we start?

Nadia Leake 02:06
Hi morning, Gill. Hi, Rachel. Great to be here. And I think as you say that parent perspective throughout Family Integrated Careis not only the important one, how can you possibly understand how it feels to be somebody else without listening, but I keep seeing messages on Twitter, etc, about how many parents are driving forward the need for Family Integrated Care, coming up with ideas, and really making that change in the model of care across the UK. So, it is great to be here. And thank you for inviting us for this first podcast on Family Integrated Care. Where to start, you know, I had this thought while we're in neonatal care with Harrison, that every time I walked into where his incubator was that we were walking into his bedroom, that was his space, that was our home. So although our ideal would have been to deliver our twin boys and go home and have the balloons and the congratulations cards, for us, and anybody whose family ends up in neonatal care, that's not what happens. You know, your home, your family, your child's bedroom, the nursery you'd lovingly prepared, if you had a chance to, it's a neonatal ward, it's an incubator, and you're surrounded by people. So that was my first thought when I considered family integrative care and the importance of it, and it's closing the gap between what you'd hoped for and what you end up with, if you are admitted to a neonatal unit with your child or children. Rachel?

Rachel Collum 03:37
Yeah, I think that thing about home is exactly it - bang on. Especially if it's your first baby, you've got all these ideas about what maternity leave is going to look like and exactly what you said, that whole kind of bringing home pink or blue balloons, and all these daft little things that the textbooks are full of about, welcoming a new baby. How many textbooks talk about what if your baby is premature? Or what if your baby is poorly. So you're so unprepared. And, of course, you don't want to tell parents about all the things that can go wrong when they're pregnant. But it means you're thrown into this world that you just didn't expect. And I think there is a sense of disappointment and coming from that as a sense of guilt. Because you're disappointed you didn't have the start with your baby you wanted but then you feel guilty. At least you've, you know, you've still got a baby there. So it's really mixed emotions. And I think a big part of family integrated care is about creating that environment on the neonatal unit that is as close to home and all of those things as possible, which is never going to be close. But it's all those things like having somewhere to sit with baby and feeling like you're a bit in control of the things in the same way you would at home. We'll probably talk more about those specific things in a bit, but yeah, I think it is that ... being thrown into a world that you never thought you were going to be in. That is the starting point of the neonatal journey.

Gill Phillips 05:10
I think that's an incredibly powerful start. Is it worth us explaining to people what family integrated care is because that's a term that I like it, because it, it seems as if it means something, whereas some terms don't. But perhaps talk a bit more about what it really does mean and perhaps what it means for you.

Nadia Leake 05:31
Yea, I'll go with that, I think family integrated care if you look at the definition, if you like, or what the back end framework says the British Association of Perinatal Medicine (BAPM) have created a framework for family integrated care, which we're abbreviating to FIcare and pretty much is used around the world. It talks about having parents as a primary caregiver to their child. So this really is an extension from family-centred care, which is very much the model of care practice throughout the UK. And many places have moved into family integrated care. But the big difference there is that the parents are that primary caregiver, and that the love and the nurture, the type of bonding that is required for the baby's brain development is given the space and opportunity to thrive. And that can only happen with the support of the healthcare professionals on that unit. Because so much of the medicalisation of your family is due to the processes and the protocols which are necessary, right? We've never questioned the medical care that our children have received. It's just how can we parent, because that's the bit that helps our babies to thrive and helps us to thrive. It helps with breast milk. And we know the value of breast milk for these tiny, tiny babies. So family integrated care in a nutshell, is about parents being primary caregivers, to their children, and an ethos, a culture on that neonatal unit that support that bonding and family.

Rachel Collum 06:57
Yeah, I see a lot the hashtag on Twitter now ... #ParentsNotVisitors. And I think that is the crux of FICare. You don't want to feel like a visitor coming to see a baby that doesn't really belong to you. And I think a lot of the NICU environment ... there are ways it is set up. That that is a barrier. So most NICU units for security, you have to buzz and wait for somebody to let you in. And I think for maybe two weeks after our little one was born. I was saying, "I'm here to see", rather than, "I'm such and such's mum". And I think that change in language took a good two or three weeks because you do feel like you're there to see them rather than you're there to be with them or, or your a complete part of that unit. And things like that. There are ways of getting round, which I think are slowly, slowly come into force - things like having a fingerprint to get onto the unit instead of having to wait and someone let you in. It's a really simple thing, but it makes a massive, massive difference to families. Yeah, I think it's about feeling like mum and dad basically, and not just someone on the side.

Gill Phillips 08:06
And I think this is where Twitter can really help. I mean, something like that. #ParentsNotVisitors. It's so self explanatory, isn't it? And I don't know if you know, we had a poem as part of Whose Shoes - 'Theoretical Mummy', I think, you know, some of these different methods get the point across very well. And in terms of you know, as you've explained so well, feeling like a mum - what helps people in that situation, ideally as quickly as possible, immediately feel like a mum.

Nadia Leake 08:38
So our experience is interesting. And this is what got me into Family Integrated Care and understanding the importance of it, just simply because we had our babies, and we were in one unit for 10 weeks, which was a very FICare rich environment. And we went to another unit for about another 10 weeks, which was family-centred care, but wasn't as strong in family integrated care as it is now and it's still developing. So I had experience immediately what it felt like to be a parent in that family integrated care environment versus not. So to answer the question for me, and being able to compare and contrast the two, I can say that feeling like a parent on a neonatal unit was being completely involved in all of the decision making, the medical care when something was going to happen. There was almost nothing that happened with either of my children that I wasn't completely aware of, involved in, and a part of that decision-making team. And I even remember one day one of the doctors wanted to reduce a drug that was helping to remove the excess water from Harrison's body. He was suffering. He had a hole in the heart and he wasn't clearing liquids. And she said she wanted to reduce the medicine. I said, No, it's not working. It hasn't made that big of a difference. If we reduce it now then what? She said okay, we'll keep going You know, and I just can't imagine that conversation in the other hospital we went to. So being that trusted, and actually acknowledged as being the expert in my child, I watched these children, the two of them for a while, morning, noon and night. So I could see no, it wasn't making any difference, there's been no improvement in him clinically. And being trusted and being equal members of the medical team for my child's care made me feel like a parent. Because if you had a one year old, two year old, you wouldn't send them to the GP by themselves. The GP would expect you to know what was going on with your child. And the same should been in neonatal care. And that's what family integrated care is about. That's what helped me to feel like a parent.

Rachel Collum 10:40
Yeah, it's about not having to ask, isn't it? .Not feeling like you're asking permission, or you need to ask what's going on? And actually, staff asking you, and exactly what you said, the vast majority of parents or at least pre COVID, are spending 10, 12, 15 hours sitting next to their baby's beds, the parent knows the baby better than any member of staff, because a parent's shift, if you want to put it that way, is is longer than any member of staff. They know all their little, like quibbles, they can tell when they're in pain, they can ... they just know baby best. So for staff to appreciate that and ask mum or dad, or even if it's grandma, whoever it might be that's spending all of the time next to the baby. What do you think, what do you think is up? Or do you think baby likes this? Do you think baby is comfortable? I think it's that because exactly what Nadia said if you took your slightly older child to a GP, they're not gonna start guessing without having any information from mum or dad. They ... that's the source of information. And I think yeah, the having to ask, what feels like permission for things when you're on the NICU, is the thing that stops you feeling like the parent, because again, at home, you wouldn't be asking anyone, would you, can I bath baby now? Is it time to feed baby now? Am I allowed to nap? You just don't do that at home. But on the NICU you, because of a lot of the logistics and practical things, you do have to fit in with the nursing team or with the consultants. And again, that's another thing that you wouldn't have in your home environment that makes you feel less like a parent, I think.

Gill Phillips 12:20
And I think picking up on what you said there, as well as being a parent, there's building confidence, isn't it? Because at the end of the day, you're the one that's going to take the baby home, your baby, you're the one who's going to feed that baby, look after that baby, know when something's wrong, take it to the GP being able to talk sensibly about what's going on and what's happening. And if you just get sent home with this hospital baby, how does that feel for people?

Rachel Collum 12:46
Yeah, there's a lot of work done on around that at the minute as well, some really good work looking at that transition to home. Exactly what you said, like on the NICU everything is so routinised ... you change her nappy every four hours, they have a feed until nearly they come home sort of every four hours, everything's on the clock. Then you get home. Nothing is on the clock, it all goes out the window. And there's a massive shock of it, especially if you're a new mum and your whole experience has been this kind of routinised way of doing things. And you're right, I think when you're in the NICU, because you know there is a team around you, if you're worried about anything or something doesn't seem right, you can just literally grab a member of staff and ask them. And then if your child doesn't have a lot of medical needs when you go home, it's just the health visit or in the GP, you suddenly lose that team. And I think that is a massive, massive shift. So the more confident you can help parents to feel while they're on the unit, the smoother that transition to home is and the less anxiety provoking it is, I think.

Nadia Leake 13:52
Yeah, I agree with that. And I think our transition to home was managed really quite well. I remember when Harrison's consultant first said, "Oh, you could be going home soon" and I swore, I won't lie. I thought, oh my gosh. And I thought, you know, we're not, we're not ready. But every moment after that it really was about making us feel confident, and that we could do this and it was preparation for home. And I think it probably was two and a half, three weeks in total that preparation. And, while this is with a medically stable child, I remember thinking why weren't we doing this stuff weeks ago, some of it. So there was care there around giving us confidence to bring him home. And I felt supported as much as possible once we were at home by the unit still and also by the community team, but there was a lack of understanding still around what it feels like when you come home. Because with our experience being so long, it was nearly five months, there was so many bottled up emotions that then spilled over once I came home. And I'd been so proud of my ability to get the milk going and maintain it, expressing milk for nearly six months, when we came home, the stress of it meant all my milk dried up. So that was again, just more heartbreak about coming home... And I hadn't done anything different. It was just stress. So, you know, my GP was great about that, and helped me to get going again. But that transition home, the need for additional support really is being worked on now. There is so much being done around transitional care. But that starts to now feed back right to the start. When does Transitional Care start and you'll hear healthcare professionals talk about discharge planning at the point of admission. And I think that needs to be more the case with family integrated care and babies on a neonatal unit. Let's get those parents absolutely ready and being parents to their children as soon as possible.

Rachel Collum 15:58
And actually going home, either permanently, very sadly, or temporarily without your baby. I remember when, the first day I was discharged from hospital because I was in for no time at all, going home. And then our baby was still in the hospital and as if you ever think that is going to be a situation you find yourself in. And then now obviously, for parents whose babies pass away, I mean, I can't even comprehend what that feels like. But get helping to support parents through that as early as possible. And if you know that something that potentially might happen, helping prepare them as best you can for that, I think, because there's a lot of, like you said Nadia, there's so many emotions, and while you're in the NICU, you're just on a high like you fire on adrenaline every day, you're in like a permanent state of fight or flight. So when you come home, like exactly what Nadia said, suddenly, you've got all these emotions, and you've actually, for the first time, got a second to think about what you've just been through. And that can be really, really stressful for parents. And I know there's a lot of research looking at Post Traumatic Stress Disorder in parents who've left the NICU. And the statistics show ... it pervades for like six months, a year, a year and a half in some cases. And I think it is because of that, because you're just in it, you deal with it. I guess there's a lot of expectation on you as mum to just get on with it. And you've got to be strong for your baby. And that's your job. And in a world where you maybe can't do everything you wanted for your baby, the one thing you can do is be there for them and be that strong person. And then when you get home, I think what do you do with all of that emotion? And I think yeah, definitely more around that and understanding what that looks like for parents, whether their baby is healthy or has medical needs or whatever it might be, is really, really important.

Nadia Leake 17:53
I had a conversation recently with a consultant in America, actually. And she'd asked the question on Twitter, we've caught up since, of what does wellness look like on a neonatal unit for parents and well being. And for me, it was like zero separation. Give me my baby, let me parent my baby. And to pick up on Rachel's point about PTSD. It was, it was a figure that struck me many years ago when I was, when I was first asked to speak about something and then just doing a bit of research for the book, that, in the Bliss mental health report, 60% of parents were diagnosed with PTSD following a neonatal stay. So I was looking for information that kind of contrasted that or just put it into context. And the same year, 2018, King's College London conducted a study where 17% of those who've been in combat operations in Afghanistan, reported symptoms of PTSD. So if you're looking at a war zone compared to neonatal care, you've got people coming out with nightmares, hallucination, flashbacks. All of these things I experienced following our neonatal experience. And so my question is, how does family integrated care start to reduce the risk of trauma? Now, there are some things which are completely unavoidable. You know, one of our twins died, it was unavoidable. He died, He was very small. And Harrison needed heart surgery and the process of getting him to the heart surgery was just about the most stressful thing I've ever experienced, but it was unavoidable. So some of the trauma that is caused by the avoidable hurt, and that's where family integrated care comes in. There are things the communication, the ability to bond with your child, are those avoidable sources of stress and pain, that family integrated care really supports and may well reduce, that long term effect of stress and, and pain, really down the line.

Gill Phillips 19:47
That's such a strong concept, isn't it 'avoidable'? I think this is the story of so much of the work that I do that medically, things are really, really amazing. And there's nothing to fault, but it's the softer things, the experience things, the things that, you know, just what you've just said, communication and language and being involved and feeling included, and the fingerprint, you know, all of these things that in themselves, you know, it's the little things are the big things isn't it? Coming back to ... I mean I was interested Nadia that you said about the problems of coming back home. And, you know, breastfeeding after all that time that you then had problems with, and that the GP was supportive. So that was mentioned in passing, but we talked about how people can support you coming up to your discharge while you're in hospital. What about the GP and the community role and the health visitors, and is that part of family integrated care?

Nadia Leake 20:44
100%, I think. We'll start with the health visitors, actually, because our experience there was interesting as well. And there has been some work from the Institute of Health Visiting, looking at how to upskill their teams across the UK. So the experience there was, as you can imagine, this was nine years ago, Harrison came home, right? There wasn't the understanding around prematurity, especially not THAT Prem. Right. He was 17 weeks plus early. So our health visitor didn't have the experience or knowledge around how to support us, we learned together and she was open to getting to know us and understanding and was instrumental in Harrison receiving the additional care he still has now, back in the day. But, those initial weeks at home, I would say the health visitor did not have a clue how to help us. The GP did not have a clue really how to help us. I phoned up about the breast milk and said I need this drug. And I told her what it was and I spelt it down the phone. And I said I would come in and collect my prescription because that will get my milk going. So supportive is an interesting term. For that, I think she listened, which was important. Conversely, when I went to her many months after being home with Harrison, and I tried to explain this ball of stress and anxiety and guilt and this horrible, oppressive feeling that weighed me down daily, she said, "Oh, well your baby died". I said, yeah, this isn't bereavement. I'm dealing with the bereavement actually, it's the rest. It was the NICU experience, and watching trauma after trauma for Harrison. So from the needle, the pricks, the bloodletting, the eye examinations, you name it, the intubation, the extubation, the resuscitation, this child went through everything. And we stood and watched it all. So that was the issue, and that's the bit that I think isn't dealt with so well. This almost indefinable, this undefined, long term anxiety and stress and, not quite depression, but this weight that you carry after a NICU experience, that's the bit that community could help with so much more.

Rachel Collum 23:10
It's like when you just reel off that list of things, Nadia, imagine, as a new pregnant mum, if someone told you, these are the things that you're going to experience in your first few weeks, months of your baby's life, I mean, I don't even know how you would deal with that, knowing that was to come. But when you're in it, you do exactly what you said, you stand and you watch it. And because you know you have to be there for your baby. And we had a couple of awful days. And he wasn't even that ill but he had to have a transfusion, which on the NICU is fairly commonplace. And again, if you told a new parent that, they'd probably have a very different view as to how common, you know, easy to deal with that was, but you're talking about these teeny tiny veins and having to cannulate and then you find yourself in a position, and again this is really to do with FICare, where you ... well, there's a lot of individual difference, but most parents want to be holding their baby's hand or finger or having their arm on them, whatever it is, while they're going through these awful, painful procedures. And in some scenarios, they're not actually given that option, like parents will be asked to leave the room while these medical procedures are taking place. And I know I've heard Nadia talk before about the fact that if this is a really complex procedure, that could be the last time you can be with your baby, then do you really want to be stood outside the room or do you want to be stood with your baby? So these are massive, massive things, but then, like Nadia says, seeing all of that is traumatic. And I think it takes a few months, and for you to be out of it and back home, before you realise just how traumatic it is and start processing that. So I think, again, that follow up care is so important. And for health visitors to recognise this isn't postnatal depression, or at least it might be wrapped up as a part of postnatal depression, but these are much more specific issues to do with the NICU that need addressing. Because it's not that you're just a bit miserable when you got home, or you've got some sort of biological imbalance in your brain because of the hormones, it's because of the trauma of being on the neonatal unit. And addressing those two things. I think pulling that apart is really important. But I think our health visitor was similarly to Nadia and ours was, in the last four years, just didn't really know what prematurity looked like or was, and Nadia mentioned that neonatal training ... so there's really good training happening with health visitors to sort of teach them some of the medics and facts about premature babies and the kind of common issues they might have when they come home, but also trying to get them to have an understanding of this kind of stuff. Like what it's like for a parent who's been on the NICU. When we came home, our health visitor kind of worried that I wasn't taking my little one out for walks and sort of tried to encourage me to go out for walks. And I was ... I have dreamt of sitting on the sofa cuddling my baby for 10 weeks, I don't want to take him for a walk, I want to have the cuddles I've been dreaming of. So it's that understanding of how the needs and wants of a parent who's been through the NICU might actually be very different from a parent who's come home with a healthy full term baby. So there is good work going on. I think there needs to be a lot more work. But it's definitely going in the right direction.

Nadia Leake 26:39
Yeah, we had a similar, and quite funny to look back on, comment from my health visitor during her first visit to our home. "Do you know, there's so many things you can do with baby", bearing in mind it was December, and he wasn't, you know, he was due to be born in December. He was born in August, we had a very, very tiny baby still at home. And she said, "Oh, you know, we should go to walks and you can go to the sensory rooms and you could take him swimming". And I said you mean scuba diving, right? Because he's on oxygen. There was no tailoring whatsoever to the needs of a parent whose child was born prematurely, or to that baby. And it's just that understanding of the medical vulnerability still, of these tiny babies during flu, winter season, bronchiolitis, RSV. That means, actually, these things are not suitable for us. They're not suitable for our child. So it is about tailoring, and that actually brings me back to the neonatal unit itself, you know, being told go for walk, go outside. Which parent walks away from their newborn? You know, even when you have a term, well, baby, I've seen my friends who have got little ones and they can't take their eyes off their babies, they're glued to them. Because that's just natural. And that's all we're asking for. And that's what family integrated care is, let's respect the natural and what we bring as mothers and fathers to our children, which is maybe undefinable. And I always contrast motherhood, fatherhood, to breast milk, where breast milk is lauded. And everyone knows how important it is, you know, this liquid gold, this life saving gold, because it can be analysed and quantified and you can make sense of it. I think until the day we can analyse and quantify motherhood, and fatherhood, how do we put the right value on it. That may never come but we need to understand as human beings this is the most important relationship we have.

Gill Phillips 28:32
But I think those examples that you've given come as close as you can to quantify motherhood and fatherhood, just those little examples that people can think, oh yes, you know, obviously,

Nadia Leake 28:44
You do. And I think one of the moments I had with Harrison was wanting to pick him up. So Rachel talked about not having to ask permission and some things, okay, we've got medically unstable children, okay, medical needs first, as no point harming your child. But once we're in a position to work together with our medical partners on this, let's do everything we can to support that parent. I'd wanted to pick him up. And I did ask "Can I pick him up?". And basically she said, "No". I won't go into that. But what it really made me think was, you know, there's no other way, nobody else picks up a child the way a parent picks up their child with ... it's not about the care or the carefulness. It's the love in your eyes and in your heart and that swell, that ... the closest thing must be being a grandparent, you know, where you pick up a little baby and you think "I've got your darling, and I will keep you safe, and you'll be fine with me".

Gill Phillips 29:41
Absolutely.

Rachel Collum 29:43
Yeah, there were little things on the unit as well. And, you can't be there 24/7. If you could, you would, but you physically can't they run ... well, some NICUs now have but the unit we were on didn't have beds. And actually, there wasn't even the right number of chairs for all of the parents on the unit, so you couldn't even sit in a reclining chair, with everybody on the ward. And you weren't allowed, again that word allowed, to sleep in the chair next to your baby. So I mean, you physically, unless you're some superhuman robot, you couldn't stay on the unit 24/7. So at some point, you have to leave, which again, like Nadia said, what parent just rocks off for the night and leaves their baby away from them, no one chooses to do this. And there was a wonderful nurse on our unit, who used to read stories to our little one while he was asleep. And she asked if we wanted that to happen, which I think is key because I'd spoken to some other parents on the unit and I'd told them that she was doing that and they were a bit horrified and was like, well, that's my job. So I think it is a very personal preference as to what kind of roles like that you want the nurses to get involved in. But we really loved that, because it meant someone was doing the things we would have chosen to do, but just could not be there to do. And again, it's a simple thing. And that's not medical, is it reading a book? that's got nothing to do with medicine. That's the additional stuff. And obviously, again, there are constraints and logistics. And if other babies needed medical attention, of course, that night he wouldn't get a story because you have to have priorities. But the fact that if they could do it, they did. I think that made a real, real big difference.

Gill Phillips 31:25
So you've got different members of staff, different attitudes, different skills and talents, different levels of trust.

Nadia Leake 31:35
So I think this is commonplace. And you'll hear parents say this, I think still now. We're all human beings, right. So this may be some people you want to more than others. Or you do have the difference, in practice. You have that individual healthcare professional's level of confidence with what they're doing as well. So you'll hear parents say that, quite often, the day they would have with their child would be dependent upon who was in charge, or which nurse was responsible for your baby that day. If one of them was more open to you picking your baby up, then maybe you could. If another one, maybe less experienced, thought no, that's not how I was trained, then that wouldn't happen. Then you have people who are more willing to question the unwritten rules or protocols on the unit to accommodate your needs as a parent. So there's definitely still a variety of responses you can get when there's something you would like with your child. We're lucky, every region now has got PAGs with quite new parents who have come off of wards and joined the PAG. So we're speaking really of something that still happens. Okay, so our experience was some time ago. Rachel's coming to four years now since, but we have parents that we speak to who say, "Oh, gosh, that happened to us. Did that happen to you nine years ago?". Yeah. You know, but I truly believe we're getting there. And the point again, of family integrated care, is that standardisation so that you can have confidence and you can have some certainty of what's going to happen during the day. Because not knowing is also really stressful. Not knowing who ... you know, I've walked onto the ward and seeing who was looking after the child, and went oh man. You know, and had to steal myself to put a smile back on and say "Morning", when my heart was sinking. Like, here we go. There's goes our day. It's an important aspect of family integrated care and neonatal care is acknowledged and there's certainly work now and the northwest, they're doing amazing work. They've got a family integrated care accreditation scheme for their 22 hospitals across the ODA. So seeing that type of thing, I know Wales have got an all Wales programme. There are other neonatal networks. We're very much ... there's a network approach to family integrated care. So this shouldn't be that level of difference between hospitals and certainly not within a unit. We're definitely getting there, there's just work to do in pockets of improvement still.

Rachel Collum 34:07
Yeah, I think that kind of nurse lottery is something that, hopefully all of this work around FICare, will gradually reduce and I think it's not like it's a particular type of nurse. So it's not like all older nurses or nurses who were trained at X institution or whatever, I think it is just some that really get FICare and others that maybe don't or have been doing the job so long that it is a really difficult shift for them because it is a whole different way of working. Like asking mum and dad, you know, what do you think is up with baby today? Or how do you think baby has been like this morning and allowing, again that word, but allowing parents to be more involved in what I suppose have been considered medical routines. So on the unit, we could take temperatures but, quite often, a nurse would then take the temperature after you, just to double check. So it undermined the whole 'we trust you as a parent' thing. And again, I guess maybe there's an argument for that because obviously, if a baby has a raised temperature, that can be a marker for infection, which you need to get really early. But if you are just putting a prong under baby's arm, can you do that wrong? Or when you get baby home, you're probably gonna do that, right. So it's those little things. And again, like giving certain medications down the tube, we were able to do but not other medications. But you know, they've all been measured out and they all just go down the tubes. So I never really understood what we were allowed to do and what we weren't and what the reasoning was. And I think that's ... that could make a big difference. Just having someone explained to you, "Well, we can't let you give this medication because if you give even a drop too much it can have really significant effects" or whatever it might be. Just knowing the reasoning for a lot of things would help. I never understood the rationale for the whole 'you can't sleep in the chair next to your baby' thing, I've never understood that. I can understand holding your baby, you're not meant to be going to sleep because that could be dangerous. But at home, you would nap next to your baby. And I've never ... and that probably is one that's bugged me the most because I never have understood what the reasoning was. Was it just a practical thing that there weren't enough chairs, was it that we were in the way of nurses needing to do procedures, but having a bit more information about that would have helped us feel more empowered. And then I think, if we didn't agree with that rationale would have enabled us to challenge it and have conversations around it. But if you're in the dark about why these things exist, you've got nothing that you can base your conversations on. So I think yeah, very often just having things explained, would have made a big difference as well.

Nadia Leake 37:00
I think the point you make there, Rachel, about knowing what's going on, because that in itself is a source of stress. It was for me, not knowing why or being fobbed off, you know, all I'm asking is to be given space to parent my child. I don't think I should be fobbed off about that. Or help me understand why. If I understand the rationale, I can walk away with that easy, but it's all these little things that then build up, build up, build up. And, if you like, put layers between parenting and increase the separation between you and your child, when all of the activities you wanted to do is to reduce the separation between you and your child. So anything that takes away from that will just help me understand it because this is a big deal. You know, if we're talking about how I bond with my baby in this environment, in this alien, non home-like environment, I think you're right, we have the right to have that explained or just help me understand. And I can sleep a bit easier tonight.

Rachel Collum 38:04
Exactly. And this label of 'difficult parent' as well that I've heard mentioned quite a few times in different contexts. That is probably my biggest bugbear ... a parent who asks questions, because they want information and they want to understand what you were doing to their brand new baby, is not a difficult parent. That is a parent who cares about their baby. That is a parent who has the right to know what you're doing to their most prized ... possession. Possession is not the right word, but it's not difficult. I could rant about this for hours and I think it's that ... it's helping staff and professionals to understand or take a minute to put themselves in the parents' shoes of what it must feel like to not know why a needle has been inserted or to not know why the oxygen levels had to go up, to be told "No you can't have a cuddle today" when that's the one thing that they can do to really bond with their child and that keeps you going through the days. Like those cuddles are everything when you're on the NICU because that's it, that's what you've got to be with your child. So, I think, yeah, this idea that you're a difficult parent, because you ask for things or because you challenge things or want to know things is ... It's the culture that really needs to change around that. And I think FICare is all about helping professionals understand why parents ask these questions or how parents feel in that situation. I know, I've spoken to a couple of neonatal nurses who've had premature or poorly babies themselves, and they have all said it completely changed their perspective on things. And they've actually gone back to work as, like in their words, kind of different nurses, because they feel like they've got so much more empathy and understanding of what it feels to be like on the other side. And obviously, you don't wish that neonatal professionals go through that experience. But just maybe talking more to parents and spending more time listening to people who've been through it, I think could really help that as well.

Nadia Leake 40:18
I agree with you. Where I have a different thought, though is ... We've had many, many, many years now of parents saying how it feels. And I still feel there is some disconnect, that we don't fully understand, you know, how does it feel to be a healthcare professional being asked to implement family integrated care? Does it feel dangerous? Does it feel ... actually I've got these parents picking up their baby when they want and let's go to the extreme here, you know, and just deciding to turn the oxygen up or down, does that put this baby maybe in danger? This is my job. This is my responsibility. This is what I've trained for. So I think ... and you know, Nikki Crowley, did a great piece of work for her Darzi fellowship, where she did ask the healthcare professionals at the hospital, what are your needs, wants and fears around implementing family integrated care? So when you see some of that feedback, and it's talking about there might be a slip of standards. How do we know what's happening all of the time? Is it going to make our jobs harder? Are we gonna have to explain everything? So when you hear that type of feedback, I think, yes, we can still explain what it feels like to be a parent on a neonatal unit, but we've been doing that a lot. I think there's a step forward now. Let's understand what it feels like to be a healthcare professional on a neonatal unit, and support that learning as well, from an emotional point of view. You know, because if something feels like it's going to be difficult, why would you do it?

Gill Phillips 41:48
And I guess this is where our Whose Shoes work comes in, because people think it's about putting yourself in the shoes of the people, the parents, the patients, but it's about, really everybody, every which way understanding other people's points of view. So exactly what you've just said there, that family integrated care. If you explain it to a lay person and think well, that makes sense. Then you could think, well, what's the problem, but it's digging into that, isn't it, all those professional standards, and medical learning and communication using certain language and not other language is a big, big shift for people to make, and to understand that then puts everybody in the same place, working together, rather than perhaps being defensive.

Rachel Collum 42:35
It links to the confidence of parents thing as well, because some of those points Nadia was making there if, like, the oxygen, okay is an extreme example, but can the parent just decide what oxygen level a baby needs? Probably not, because they need the medical training, they need an understanding, but can a parent decide when to give their baby a bath? Probably more so, if they have the right information. So if they understand that they need to regulate the baby's body temperature, and the wrapping is really important. And if they're shown how they can do that safely, then probably that is something that they could actually just decide it's bath time for baby and get everything themselves. And that's something that probably there's lower risk of than anything that does involve oxygen or medication. So I guess in understanding the fears of the medical professionals, we could work out which things they're less worried about. And of those things, which things is it to do with their trust in parents doing it right, and we could actually then help the parents to do it right through training. Because like I mentioned before, you're on that unit for so many hours in a day. You don't want to spend a lot of that time away from baby but maybe for half an hour here or there, you might be amenable to going with some other mums and dads and learning how to wrap baby during bath time or how to give medication or whatever it might be. Especially if that means you can do more of it and you can feel more like a parent. So I think linking those two things together to think about what training we can provide for parents would really help to make some practical inroads into FICare and how it happens.

Nadia Leake 44:16
Yeah, yeah, totally agreed. I think this is where the BAPM framework brings in so many ... I keep hearing the same words. So you know, everything's on the right page, we're all on the same page, and trying to move this forward. And if you think about the five pillars of the BAPM FICare framework, you've got that empowerment, Rachel, is what you're talking about education, and that's a key pillar, and family integrated care, and implementing it in a sustainable way. Educate everybody, make sure everybody is empowered to implement family integrated care, and to really drive that bonding between parents and their children or carers and their children. The BAPM framework talks about partnership with parents that, again, is what you're saying, how do we do this together? It's not our environment, it's the healthcare professionals environment, when you think about it, as much as I thought that was our bedroom, or an extension of our home, it's their environment. How do we make the environment conducive to family integrated care. Culture, you've mentioned, Rachel, well being I mentioned right at the start, because that trauma and stress that continues for years after is something that we can, again, using the term, we can avoid, where possible, just through education and working together. So it's good to hear really just in our randomly formed conversation that we have picked out those five pillars of the BAPM framework. And that's something that Nikki and some of the healthcare professionals, maybe will talk about down the line. But they really are, for me, the five key things if we can partner, right in the centre of everything, partner with healthcare professionals, and have that two way understanding. So that's something I'll be doing a bit of research on in the coming years just have that two way understanding of what's important to healthcare professionals, when they're being asked to implement family integrated care, it's more likely to happen.

Rachel Collum 46:03
Yeah, and things like burnout as well. I've seen a lot about that from the neonatal nurses association recently. And like just how stressful COVID has been for neonatal staff dealing with so many changes, regulations. And the vast majority of those people have actually felt quite heartbroken that parents haven't been able to come on the unit. So they don't want that. And they know from all of their training, the developmental and sensory impacts not having parents around is going to have on babies, like it's just going to be ... just don't even want to think about it. And then neonatal staff have gone into that profession because they want to see babies thrive, and they want to send healthy babies home. And I think as a parent, I mean, I haven't been on a neonatal unit during COVID. And I probably can't imagine what it's like to a large extent. But probably all you see is being told No, you can't come into visit. No, you can't touch baby, you need to wear all this PPE, sorry, we know it means you can't really bond very well with baby. But this is how it is. But I guess they've done the best they can in what's essentially an impossible situation. But again, I think helping parents understand why all of these rules have existed will go some way to maybe buffering it slightly. And I think you're never, with COVID, you're never going to be in a situation where parents are happy with the way things are. Because things are just terrible. There's no other way of looking at it. But I think it's that understanding a little bit. Yeah.

Gill Phillips 47:38
So oh, my goodness, there's a whole extra dimension there, obviously with COVID. I think we can't go there, at the moment. It might be that for another episode, we could get some parents who've actually had that experience. Wouldn't that be amazing? But I think to try and tie up the session today, which has been amazing and I think has started our conversation so well. Flo and I are doing a coproduction session for NHS England called Shine A Light on Coproduction. So have you got any examples. I mean, just something simple that we could perhaps include as a clip, as what is coproduction with parents, just a vibrant example of a couple of things that you're doing or that might work.

Rachel Collum 48:20
And we've got some really great work happening at the minute to our Parent Advisory Group in the Northeast. I think that's pretty much what the group is about, really. So we're very lucky that the care coordinators who we work with, absolutely want to know what parents not just think but what ideas they have and what they would like to see happening on the units. So they will often bring us, I guess, a problem or an issue that they've seen parents struggling with who are currently on the unit. And then they've basically asked us to run with it. So we'll have brainstorming sessions of things that we experienced. And that's nice as well because there's so many different perspectives on the parent group. So you've got some people whose babies have left the unit very recently, others who were there during COVID. You've got some whose babies came home perfectly healthy, others who babies came home with more complex needs. We've got parents of multiples, I think we've got one set of parents whose baby sadly died. So you've got so many different perspectives. And we really work with the care coordinators. And it's not a tick box, naturally, I would say, we tell them what we would like to see happen, and they really take it on board. So from that we've developed, it's currently in progress, we're developing what's been called a parent passport, which is the idea that when you come home, there are certain things you want to feel confident or empowered to do with your baby. There's been a lot of different iterations of these kind of booklets or leaflets for coming home within the past, and they've been quite heavily competency based. So it's almost like a tick box kind of discharge thing. You know, can mum feed baby, can mum keep baby warm, Does mom know who to contact if baby's not breathing, this kind of thing. The feedback from the parent group has really been about moving away from that idea of competency, which feels quite judgmental when you're a parent and again, is about almost like, are you capable of looking after your own child, which is not how you want to feel when you're about to come home after a 10 week stay on the NICU. So it's much more about what support is out there. What can we do to help parents while they're on the unit so that when they come home, they can feel more confident. So that's been a really completely coproduced booklet. Similarly to that there's another project I've been involved in, that's been completely parent-led to develop some aids to use on the neonatal unit. Again, all about empowering parents and helping them ask medical staff the questions they want to ask and feeling more involved with their baby. And that's been completely parent-led, the ideas came from parents based on focus groups, and interviews. The design of the aids was all driven by parents. And it's come through a few different iterations now. And each time it's gone back to parents to get their input before we fed it back into the unit. So what you end up with is a product developed by parents, for parents who really get it and get what that experience is like. And I think the parent advisory groups are just invaluable. And I know there's some brilliant ones across the country, because it means parents have been given a voice and an opportunity to get things out there on the unit like that.

Gill Phillips 51:28
That's such good examples, Rachel, it makes me feel quite proud in a way in terms of some of the earlier work we did with Nobody's Patient and how some of these things are leading in the same direction. So Leigh Kendall, who was one of our MatExp leaders, a mum, who sadly her son Hugo died, having spent time in a neonatal unit, the same stories we're talking about. Medically, things were very, very good, but in terms of the things that can be learned from experience, and Leigh got involved in helping the hospital rewrite letters to parents, because she was aware of how that communication again, and how things were, how she felt receiving a letter and how much better it could be to rewrite things using better wording and so on. It's wonderful to see really wonderful to see these parent-led examples coming through and people listening now. So I think you've really set the way for further podcasts. I think the parent passport lends itself very well as a kind of segway to transitional care. And we've got some wonderful people who might be prepared to come along and talk to us about that. Nikki and Katie, just dropping a hint. What do you think?

Nadia Leake 52:39
I'm sure they would.

Rachel Collum 52:41
I think that would be brill!

Gill Phillips 52:42
That'd be brilliant wouldn't it. Okay, well, let's see where this can lead. And thank you so much, Nadia, and Rachel for so generously and courageously sharing just a small part of your stories with us. But with that aim of helping other people and getting family integrated care properly integrated into everything that happens.

Nadia Leake 53:02
Thank you. Thanks for having me.

Rachel Collum 53:04
Yeah, thank you. We could talk about this for hours. So yeah.

Gill Phillips 53:09
Thank you.

Gill Phillips 53:10
I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favourite podcast platform, and please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me. And let's hope that together, we can make a difference.

I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favourite podcast platform, and please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me. And let's hope that together, we can make a difference.

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18. Family Integrated Care - what do parents say? - Wild Card - Whose Shoes?

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Family Integrated Care makes a huge difference to families when their baby is in neonatal care. Today I am talking to Nadia Leake and Rachel Collum, two mums who have had babies in neonatal care, and are doing wonderful work in this area.In a nuts...

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Episode 21 - Cristina Serrão - Lived Experience Ambassador

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Episode 21 - Cristina Serrão - Lived Experience Ambassador

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Gill Phillips 00:11

My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to co-production. I was named as an HSJ 100 Wild Card, and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

Gill Phillips 00:46

So who is today's podcast guest. We've been talking about doing a podcast together for ages. But then typically, the plan came together very spontaneously at the last minute, and this is very JFDI. For the last half hour, Cristina Serrao has been sending me links and zesty bits and lots of lemony ideas. It feels like peeling an onion, there are simply so many layers. Anyway, get ready for an energy-packed, inspirational podcast guest. Cristina is in the Shaw Trust Power 100 and a fantastic role model raising the profile of disabled people. Cristina might choose to share one or two of her own challenges, and the special people who have helped her along the way. She works as a lived experience ambassador. And when I say works, I really mean lives and breathes. Everything I see and hear about Cristina is about her bringing people with lived experience together in order to amplify the voices of others, especially those who might not otherwise have a voice. And also to help them have fun and a better quality of life. Cristina has a very, how shall I say, colourful past, and she always adds colour wherever she goes. I've been on quite a few collaborative online sessions with her recently, and you never know what to expect. She has appeared in enormous sunglasses, and last week showed us all a big basket of lemons that her mum packed in her suitcase in Madeira. With Cristina, there is never a dull moment, I found a comment that I wrote myself when nominating Cristina for a 'Hilarious Patient Leader Award'. So this is my quote. "Cristina is a real mover and shaker. She is really passionate about co-production and takes everyone with her. She is inclusive and human and makes me laugh, always pushing the boundaries and working towards positive change. And today, we have something super-duper zesty, I believe it's the launch of Lemonade Radio. So we definitely need to hear more about that. So welcome, Cristina, where should we start?

Cristina Serrao 02:55

I'm not even sure really, because actually, you've said where we're going to end up but wherever should we start? I'm not sure. How did I get here in the first place? Where are we now? So I suppose right now is, you know, you did mention what my current role is, and I can mention it is NHS England and Improvement. So you know, I'm the Lived Experience Ambassador, National Experience of Care team. But I'm also Cristina. And I think that's the most important thing that I always try and bring to everything I speak about is I'm somebody with physical mental health conditions, who has social care needs. And actually, you know, I'm not just tick box and, you know, I want people to recognise that, you know, our voices need to be amplified. And I think it's really tough to kind of like know where to start really, well if I go right back to 2012. I used to work for local authority and austerity, unfortunately I was made redundant so was my wife and we were both managers in the local authority Play Services and I think from then on it was get my health a bit more sorted and I had four operations. So I think my journey has been a bit of a roller coaster really. It all started from what falling off that wall back in 2003. Not a very high wall I'm only five foot two and I have to say the wall was only four foot, we went and measured it, but you know, landed badly, but maybe I landed on my feet. I'm not really sure. But without a doubt it changed me. It changed my life. And I was definitely burning a candle at both ends and in the middle. So for me, something had to make me stop and kind of think actually what are you doing with your life? I was an IT consultant back then in 2003. Working in the city, I was like basically partying all the time, and just that one accident and breaking my talus and lots of people don't realise where the talus is but it's the ... right in the core of your ankle. But I didn't just break it, I decided to break it in half, dislocate and smash the other quarter that rotated into pieces. So even my ankle has been a bit of a story of three operations later, but it stopped me and it made me recognise - did I want to work on multi-million pound projects or did I actually want to make a difference. And so that's what happened. I went back and gave back. I used to be a youth worker. And then I went back and started becoming an outreach worker. So my community work lasted probably, from what started as applying because I wanted to get into university really, from what happened then to actually going back into an area that was at one point statistically, was one of the most deprived areas of Western Europe, to actually working for NHS England, and it's been quite a journey, I must say.

Gill Phillips 05:31

That's amazing. I love it when I talk to people, because you only know so much about them. And already I'm finding out things, you know, bits that I've heard or variations of, but I didn't know about that big career and the big money. I guess, inevitably, I'm looking for finding that resonance with myself. So it was my own cancer experience, that probably just changed everything. It just makes you stop and think what's important to you. And is this really what I want to be doing.

Cristina Serrao 06:01

What matters to you. Exactly.

Gill Phillips 06:02

Yeah. What matters to you, is powerful.

Cristina Serrao 06:06

Really powerful and I think at the time I was an IT consultant, I had private health care. And I was taken into a local hospital and asked, Did I want to go in the private ward? And I said, would it make a difference? They told me it was the same surgeon, only one surgeon was willing to touch me to operate. And actually what's strange was only last year, I was on a Teams call. And there she was, my surgeon after 17 years. And I hadn't seen her after she put me back together. So it was quite amazing. So my life, I do believe, it's you meet people for a reason, and you learn all the time. And so for me having that moment where I was actually, I'm not happy doing what I'm doing. I'm going to go back and I needed something that's flexible. And I didn't realise at the time that I'd end up with disabilities. And I was somebody who, as a youth worker, had set up the first Camden Disability Youth Forum. And when I was quite young, so I tell you a funny story. I took a group of disabled children across, we were meant to try and get to Guernsey, we never made it and I've never been so sick in my life. Oh I was so ill. Yeah, definitely love a boat, but only if I'm sunbathing. Oh, yeah, it was bad. But in Poole harbour at seven in the morning, I'm screaming because they've tied me off. They thought it was really funny. I was quite a bit fitter back then before I fell off that wall, I climbed up and I was yeah, I'll get it all sorted, you know. And yeah, the kids thought it was funny to encourage the staff to tie me off. And they tied me off in the middle of Poole harbour - screaming to get me down. I'm really scared of heights. So I think I always find myself in challenging situations. And I have to make myself laugh, because otherwise I'll cry. So I've worked with so many young people, people that were like between 13 and 19, up to 25, actually, who had really struggled all their lives with their disabilities. So for me to then find myself falling off that wall and being that person that then was in that situation of needing help, and not being able to walk for six months, I was just like, shocked, I'll never lie about being sick ever again, at work, because I'd been off sick. And I was like, never doing that again, because you never know what's gonna happen around the corner. So for me, it's like, you really don't know where your story's going until something changes. And I think, for me, I will always stop - I love chatting. But the thing is, I really love listening to people's stories. And I love hearing people's journeys and how they got there. And I will talk about it in a little while but why Lemonade Radio came about and why it's coming about and being launched on the sixth is because actually, we need to reconnect with people. And I think some of the work I've done during COVID has been amazing, but it's only been able to happen because we've been able to connect in a very different way, which made it accessible. I'm somebody who wasn't able to work full time for eight years. And I went full time during lockdown one, at the same time that my PTSD was triggered, and without the support and working in an environment and with people like yourself who just accept me for being a bit different and a bit of a joker in what was, you know, has been a really difficult two years, hasn't it, really? And I think coming to some of your sessions absolutely, absolutely set up ... if you see that photo anywhere, guys. For sure those big glasses. They're not something I'd walk down the street in, but they were definitely influenced by going to your sessions. Without a doubt you have to expect the unexpected. And I think it's just breaking down those barriers where people have forgotten to have fun, forgotten how to not take themselves so seriously, I think.

Gill Phillips 09:28

Yeah, that's a heck of a lesson in life, isn't it? Just don't take yourself so seriously. Lighten up, be a bit more, I don't know, just more more relaxed. And I've found that with the workshops I run that as I get more relaxed and a bit more confident, then you can see other people get more relaxed and the sessions get more real.

Cristina Serrao 09:48

Absolutely, yeah.

Gill Phillips 09:49

It's just human beings coming together, isn't it? So I won't tell you, because this is about you not me, I won't tell you about how I worked at Calais Hoverport and dealt with parties like you, crossing the Channel ...

Cristina Serrao 10:01

Yeah, you wouldn't have got me on the hoverport, that's for sure. I would have been like feeling sick. Now we were on the lovely yacht. I'm sure it was amazing yacht, but I was absolutely petrified of being on. Yeah, it was a 70-foot yacht like amazing. No, absolutely love being near the sea. And you know, you mentioned Madeira. And that's where my family from. So for me, I think a lot of my work and it's remembering, you know, my mom's journey. And at the end of the day, my entry into this world wasn't that easy. Anyway, my mom had a really rare type of cancer leiomyosarcoma which basically, layman's terms is a fibroid that went cancerous which is very, very rare. So rare that I actually met the professor that was a doctor for 20 years. And he still called it the miracle lady. So she was probably at the time. Being in England about five years didn't speak English much. And if it wasn't for one nurse, one nurse that took time My mum always don't know her name, no idea is probably not here anymore . But one nurse took her time to just, in my mom's broken English work out, what my mom wanted to do. And it was in days of people not being told they had cancer. So my dad had obviously been told she had 6-12 weeks to live. And so, he is not man of many words, as it is he was very upset. Mom said he bought a bit of jewellery and she thought, something's up. So yeah, so basically that nurse, my mom pretty much said to her, you know, so if they can do and she said, there's an operation, but you'll probably die. My mum just turned around and said "I'm dying anyway." So I think that kind of strength from my mum. And if I think back now, I was a young carer, I had no idea. It was just how life was. I translated, I didn't bunk off school, never needed to. It's that thing of, actually, I've got that awareness. And people hear me speak. And I was born in London, I've got a real London accent. And unless you get to know me don't really understand what my background is. And having been somebody who's been in that situation, and not even realising you don't realise how much it impacts the whole family, when there's diagnosis that I'm quite fortunate actually she did have cancer again, after 30 years, they were convinced it was going to be within 20 years. So they kept her on the books for 20 years, but she had breast cancer. But you know, she's still here at 79. You know, it's amazing. Fantastic. And actually, it's one of the reasons I am launching a radio on her birthday.

Gill Phillips 12:17

Oh, happy birthday. So that will be today. By the time we put this out. So yeah, happy birthday to Cristina's mom.

Cristina Serrao 12:23

So yes, for me, it's really important. It's a year since I last played, and going back to why playing the radio is just, it helped my PTSD, I have PTSD from an awful situation 20 years ago, that was triggered in Lockdown 1. At the end of the day, that vulnerability and finding out I was in the shielded group was so hard. Without a doubt, it was so hard, I had no awareness, it was gonna impact me like that. And I just threw myself into work as much as I could, and connecting with people. And that's what's been amazing is the connections that have been made, those network of networks.

Gill Phillips 12:59

So we've got, we've got network of networks, we've got lemonade radio, we've got young carers, there's all sorts of topics and I could go off with any, because one of my favourite bits of Whose Shoes work I haven't done a lot, but I've done some and incredibly powerful and what you said there about young carers and young people, children at school, whatever, not seeing themselves not knowing that they're young carers. For me with teachers in my family. How many of those teachers know that they've got young carers in their classes, and perhaps when they haven't done their homework on time, or whatever it might be. So I've got some powerful poems. Sometimes it'd be another discussion, young carers, and then connections you and I, Cristina could do connections, I think our networks are such a big part of our lives.

Cristina Serrao 13:49

Yeah, absolutely. Trying to connect other people. And it's definitely part of my recovery. My anxiety and depression for when I was like, 16,17 probably stemmed from the situation at home, a lot of people think, Oh, was it because your sexuality? And like No, not at all, I had boyfriends? So for me, it was, I've always believed in you fall in love of whoever you fall in love with. And so, for me, when my parents found out, I was dating a girl, they threw me out. It was really difficult, not only today for me out, they denied they threw me out to this day. In fact, there was quite heated debate about only a matter of weeks ago. So people kind of block out some of the things they do in life, and you have to think hard, you move forward. And for me, it's not that I can forget, because I won't forget, I'm a bit like, an elephant like that. But I just kind of put my energy where there is good energy and move on because actually, you can spend so much time kind of wrapped up in that and of course, it still gets you on a bad day. But for me, it's what good can I do and if I can help other people who have been in similar situations, I always will. So I ended up leaving home. And what a lot of people don't know about I sometimes might mention on Twitter is actually I ended up in a really bad domestic violence situation. So I'm in social housing. Now, I've got no shame to admit, I'm in social housing, because I was given social housing because actually, somebody tried to kill me. And so that's somebody I was in a relationship. So for me, it's, you know, you have no idea what somebody has in their past, what lived experiences, and actually what it takes to talk about that lived experience. So I did say to you that, maybe I'll touch on some subjects, sometimes I won't. But you know, it's about relevance. And I think that's what comes out in my work that relevance, you know, not going to throw it all out in one go, because it doesn't help anybody, including whoever's listening to you. But what's really important is the relevance and how you can draw on your own lived experience in a safe way. And I would like to, but how I kind of learned to do that, really, and I've got to really thank a few people who saw something in me, certainly Cerdic over at the peer coaching service at Camden, Islington. He took me on as a peer coach, I hadn't worked for five and a half years. And we had clients, they were called clients, they're not service users. They all had a physical, mental health and social care needs. And I thought, okay, I can do this, I can do this. You know, I've been a youth worker, community worker. And I was like, Why am I being matched with some of these people? And I realise it's about connections. And we did a lot of motivational interviewing. And it was those connections that I made with people. And sometimes you'd have one lady, and hopefully she'll end up hearing this. And as a fan on radio, too, but she was so much older than me, who had breast cancer, who had chronic pain and lots of things going on for her. But somehow we connected and the best time ever was going to community, bingo, at a community lunch, because I was just like, I love eating, and community bingo. And it was just those connections, just being able to chat. And it turns out, she'd love to talk nearly as much as me. So it's great sessions, but it's just giving somebody a little bit of light, a little bit of relief from what their day to day is. And if I'd had me come into my home, as a peer coach, five and a half years before, maybe I'd have gone back to work sooner. Yeah, you know, I think it's the power of peer work. People need to be supported. And I think that's what's sometimes missing in some services is people don't recognise how much we give of ourselves, each and every day. You don't hide it away. It's the people know that you're in those kind of roles. But what's amazing is how much support, how much respect how much love I felt, and the people I've been working with, over the last two years, I think I've had people, clinicians managers come up to me and you know, virtually, obviously, but say to me about their own lived experience, but they're not in a situation where they can talk about it. And I feel like one day we'll get to a point where nobody hides away from with stigma, not of mental health, of very personal health conditions to people just don't want to feel like they're different. Don't feel like they're showing their weaknesses. It's not a weakness at all. Showing your vulnerability is not a weakness, without a doubt, but it's not easy.

Gill Phillips 18:06

It's not and I'm hoping, obviously that the podcast series will help with that. The kind of people that I'm talking to basically what they've got in common: passionate people, interesting people, people who are making a difference. But everybody's got huge stories really, absolutely. Definitely Yvonne Newbold comes to mind. And Rachel Jury comes to mind as two of the previous podcasts , people who are literally taking something that is a taboo subject in Yvonne's case, violent and challenging behaviour and children. And then, obviously, Rachel @Rocking2Stomas , and boys boy is she doing that! So I feel incredibly privileged to be able to do that. And it's funny, as you're talking, obviously people are coming to mind in my life. So you're talking about things come up, and they're relevant. And I would really like to give a shout out to Marcia, I'll just call her Marcia. She was my line manager when I had cancer. And really ... I was off work for 16 months, and I'd lost confidence, big time and inevitably stuff happening at work. And she just took exactly the right line in terms of helping me get back to speed, and very quickly got back to speed. But that was just how it worked out. You know, that Day 1 back at work and having someone who believes in you, a Jamaican friend of mine, I'm still in touch with her and she's extraordinary. But if Marcia hadn't been there, who knows what would have happened to me?

Cristina Serrao 19:33

Well, mine was even more peculiar because my two people who spotted me really was my, basically my therapist for my PTSD. And my surgeon so I've got a sacral nerve modulator. So it's like a bladder pacemaker, because of my Ehlers Danlos Syndrome, and you know, I have bladder and bowel conditions. And so basically, my surgeon and it was because I asked really awkward questions, people say I'm a bit challenging. But she loved the fact I asked questions. And I probably asked some questions in an information day, because it was just humouring me. But she said it, I stood out in the crowd. And for that I'm forever grateful. Judy over at Camden and Islington and Miss Elneil wrote my references for my first job. And for me, that was a big step for a therapist and a surgeon that only knew me as a patient, a service user. To write a reference for me, were just like, wow, I hadn't worked for five and a half years and UCLH took me on as a Patient Director, I was Patient Director. And again, big shout out to Natasha Curran, and Lisa Anderton, who was my mentor, and when I was like, up and down like a yoyo, who interviewed me and got me into that role. So I think there are people that you can see who have helped along the way, and there's people that I'm still in touch with. And it's amazing, I think to myself, sometimes, how am I here? What am I doing? My mom thinks it's hilarious. Still can't work out what the hell I do. But yeah, they're just like, where are you talking? You're talking in Brazil? To who? So she just thinks it's really funny. But she's always said that there's one thing she'd never worried about is that I'll always find a way. Yeah, a friend once who said to me, they called me Cris. Oh, you know, where there's a will there's a way and where there's a way There's Cris. So it's very much true that I'm always looking for opportunities, it's probably because actually, my head's at 100 miles per hour. So I'm always multitasking in my own kind of way. But then when you land in a place where that energy and that kind of fun side isn't dampened, then you can just like blossom, and just really have fun. I've never been in the job really where actually I've enjoyed it so much. And it's because I'm really fortunate. I know, I'm really fortunate that I'm given a lot of freedom to go with the energy. And I think that helps, because it meant I found other people. And we just keep on growing. And it's a bit like, it's a movement, isn't it?

Gill Phillips 21:58

So that comes back to the network. So isn't it absolutely fantastic - networks, you're building, particularly, I suppose, this is what I see the lived experience partners, and what a incredible group of people you're pulling together, they're ...

Cristina Serrao 22:11

I'm gonna remind you, I keep telling you, this is what we're doing.

Gill Phillips 22:14

Yeah.

Cristina Serrao 22:15

People bring people in. And it's us. And it's not just about me. And I'm really particular about that, because I think, having been in a role like Patient Director, where I found it quite isolating, and quite lonely, that I promised myself that I wouldn't go on this journey alone. So I used to have a really bad joke in the beginning, I'm gonna tell you it. So I'd say ... don't worry.

Gill Phillips 22:35

Beware listeners!

Cristina Serrao 22:38

So you know, when you climb the ladder, you know, you take people with you. And then I say yeah, because if you fall off the ladder, it's a softer landing. You can't say that. I've said it now, you know, so it's out there. But the reality is, I have amazing people that have been on this journey with me. For three years, people that I would love to see working right beside me one day, very much on the wage, in a team. That'd be amazing. I live in hope ... one day, so it's always about dreaming big. And things can happen. And every time I think, Is that really possible? and then something else amazing happens. So I can't believe they haven't kicked me out yet. But yeah, I sit on a fence, and there's no doubt about it. It's a very unusual role, because I am given a lot of freedom.

Gill Phillips 23:24

Well, I'm really glad that you do dream big Cristina. And long may it continue. I guess the way I see it, what you do, and the good humour that you bring to it all is pulling people together, rather than apart, it is moving things forward. Otherwise, I dunno, it would just be lip service. And people can see straight through that. I'm glad you feel appreciated. And I guess it's central to this conversation, isn't it that when people feel appreciated and supported, they do a better job. But the last couple of years have just been so difficult for everyone.

Cristina Serrao 23:56

It's been an amazingly sad, amazingly fast couple of years, like where have the last few years been because actually, our whole lives has changed, haven't they? So, but would I have met so many people? I doubt it in that short time. Yeah. It's been extraordinary for that. You know, when I was having really a lot of panic attacks, I couldn't even make it to an appointment. It wasn't so much just because I was on crutches, it would be because I'd get to the front door and I'd just have panic attack and I couldn't leave. But you couldn't call up and just say like, I'm having a panic attack. Can you please change your appointment? It'd be like, DNA didn't, did not arrive and because you've been in too much of a state to actually ring through and I just think to myself, those people that are housebound, that whichever word we want to use today I was housebound, so that a lot of it when you're ... my anxiety kept me indoors. And so for me anytime I felt vulnerable, triggered lots of things in my life. So actually stuff actually we've been able to connect with people that aren't going out much those people that shielded group So for me, you know, lots of people talked about working from home and I'm like, I wanted to work from home, people wouldn't believe that you're working from home. You know, I worked in I.T. years ago, like I mentioned, we were doing remote working years ago, absolutely, years ago. And then it just seems that what's amazing is how much things have caught up. Society has accepted people work from home. But I find it still really sad. I find it sad that it's taken a pandemic, for people to realise there is a whole workforce or people with disabilities who could work from home. You know, there's a whole group of people who with additional support, reasonable adjustments, can give a really, really good impact on any work. And I think it's opened up opportunities, but I still find it little bit sad. It's taken a pandemic for people to realise, yeah.

Gill Phillips 25:49

And trusting people to work at home. And I think that comes back to one of the themes that's coming through on the podcast is around trust. And what you assume is, and this takes me back to my background in local government in social care, and like the roots of Whose Shoes really in terms of personalization and personal budgets, but could you trust people with this money? Could you trust them to actually make good decisions about how that money would help them, rather than 'we the managers who know what people need'? And it's that whole tension and trust and Rachel saying that she had to have a scan to actually be believed that she hadn't got a bladder, it had been removed.

Cristina Serrao 26:30

Yeah, I know. How can you not believe somebody with something like that. And I think it's, I think it's actually quite cruel to put somebody through a scan unnecessarily. So I've met Rachel, when I presented that Expo with Carol Munt . Got to have a shout for Carol, here ..., she's the original pirate, but Carol spotted me, she spotted me speaking at something. And I'll be honest with you, I blame Carol, blame Carol for everything. It's all her fault. I'm here. But what's really funny is we our birthdays are one day apart, so it's really quite amusing. So I'm like, Oh, I'm like mini Carol. So yeah, it's really funny. I have a lot of respect, I have a lot of respect for the people that came before me. Without a doubt. There are people that you know, I haven't always seen eye to eye with, don't necessarily agree with everything.

Gill Phillips 27:20

Yeah, inevitably

Cristina Serrao 27:21

But I have utmost respect for the people that came before me and had to scream and shout. Miss Elneil, you know, when I came along, I think I said in my interview, as a Patient Director, I'm ready to sit down and talk. But I absolutely respect all the people before me. I will give out a shoutout to Alison Cameron. Without a doubt, that's how I spotted you. Gill because I saw your interaction with her on Twitter. And I thought, who is this lady though? Who's this Whose Shoes? And I think that's what ... when some people had forgotten how to be kind, you were always really kind. And that's what I spotted. I don't think I've ever told you that before. And I spotted that in you and I thought there's something here, you know, what, what is it? And so, for me, we're not always 100%, I'm not always 100% . You see the fun side of me, you see the side where I'm not in tears. But I've done so much crying in my life. I think that ... I'm still laughing every day that I'm able to be at work, that I'm having fun with it. And that nobody stopped my ... and I will say, crazy ideas because this lemonade radio is definitely ... my wife, bless her. She's just like, "do whatever you need to do". She's just like, it's a hobby for me. We're doing it all ourselves. We're not trying to raise any funds. It's just about connecting people and trying to do it on a budget and proving that can be done on a budget. So ... yes, so lemonade radio, which it was all about when the world gives you lemons, we'll give you lemonade radio and it without a doubt it's so gonna be so cheesy. I'm sure ...

Other 28:51

So, why didn't than anybody else tell me you about it. Apparently there's this new thing called Lemonade Radio . Check it out. w w w dot lemonade. Dot radio.

Cristina Serrao 29:04

Cuz you love lemons too. And I was like, Oh, wow, look, it's all about lemons.

Gill Phillips 29:08

Yeah, we do do lemons, too!

Cristina Serrao 29:10

Yeah, so I think it's those connections. It those, you know, things that you can giggle about that just makes each day a little bit easier.

Gill Phillips 29:18

And the connections and I think there's a whole thing there around 'the other half', the long suffering @MrWhoseShoes, the people that are so important in terms of supporting us with these wacky and time-consuming, take over your lives... When I told him I was starting a podcast series. I think he thought it might take quite a bit of my time and it has done but you know, he's special. He supported me with it. And not to go on without mentioning Ally and sometimes the stories that sit behind things and some of it quite ... you couldn't plan it. So the Scottish connection that Alison Cameron had with my Mum and tweeting as @GillsMum, and sometimes they'd actually have a chat together. And my Mum suddenly became this Scottish person with a proper Scottish accent. And she wasn't putting it on, I promise you, she wasn't putting it on. Her parents were Scottish. She had grown up with a completely Scottish accent, went to school, and they laughed at her. So she turned it off. And that was the only accent I've known. But then suddenly she became ... comparing wee timorous, cowering beasties, or whatever it was with Alison. So some of these Twitter relationships, the connections, they're very special in all sorts of hidden ways, as well as the things that people actually see. But the timeliness, I think, you know, you were talking about your role now as lived experience ambassador and the people who've gone before you, I think that like the work that I do, you know, personal budgets, and so on ... change takes time, and there are people who've gone before you. And sometimes there's a timeliness in terms of when you come along, and perhaps like the next generation almost. But everybody has contributed and done their bit enormously.

Cristina Serrao 31:01

Absolutely. And for me, it's exhausting. Come on, I need more people to take over because I'm tired after just two years for like being full throttle. But you know, without a doubt, and I remember I remember contacting Alison, I'd never spoken to her before. And actually, we didn't actually speak for another two years, probably. But I messaged her and said, I found one of her videos really inspirational, because she talks about being homeless. And I hadn't really talked about being homeless, and that how I'd had no choice but to go back into domestic violence or live in my car. And so it was, it was them kind of connections that you just think, oh, and you do look back at your life. And you do think, you know, I'm 45 I'm not ashamed to say it. But I act like I'm much younger, because I love it. Why not? Yeah, why do you have to behave like, you're like at the end, it's just for me each day that I have still here. I'm very grateful for. I, you know, I've had a rough time. 20 something years ago, I might have not been here. So for me, it's, it's hard to talk about some of the things ... I won't go into too much. But you know, there are times where I felt like I had no one, even though I was surrounded by lots of people. I talked about it when I was on the radio last year about, you can feel so lonely when you're in a room full of people or even in a house full of people. And that's how I felt. That's why immediately I kind of tried to get some help and hadn't felt suicidal in so many years. And I had, you know, I did in lockdown one. And it was quite a shock. To me, I think and part of my recovery to talk about it. So as you know, a bit of a trigger for some people. But the reality is, it helps me and it helps me get by each day. And if I kept everything ... I talk so much, can you imagine if I kept it all in my head, and I didn't have an outlet. I would definitely be quite unwell, I reckon. So for me, the more I get out, the easier it is on me. And the better I sleep. And that comes back to the radio without a doubt. I had no idea that playing on a radio and having fun will sort of make the sleep better, you know, in lockdown one, I was sleeping one hour if I was lucky at night, because I just couldn't sleep it was, it was awful. So for me started playing, I was like, wow, I can sleep! People said how can you do this after work? I was like, Oh, I don't care if I still get four hours sleep, this is fantastic. So it's finding those things that help you and people, have hobbies, etc. Or what can I do when I'm at home because I don't want to get out there. And I'm still in the high risk group and I don't want to be out, unless I need to ... apart from going to watch Arsenal, I have to tell you that. So that's the only time and even that is very strategic, how I go in how I leave without passing many people. So I think, you know, what I'd love to see is many more people being able to talk about their experiences and connecting with each other, and not having that fear of speaking to each other and just learning a little bit more about each other as well.

Gill Phillips 33:54

I think you're bringing something that's just so real and the more people who do speak out or just chat really about their experiences, rather than necessarily a big deal presentation or something very formal. I think those are the things that can encourage others to I think. We find this at our workshops, that you get people wondering how it's gonna be and then somebody lets down their guard a bit and says what happened to them and then somebody else, and you can see the other people on the table. They're just strangers, often who just met each other. But immediately there's a bond there. People are prepared to share more and to realise that we're all kind of human together and that we can find a solution together rather than ... A big thing I think we've explored a lot with Whose Shoes is the Us and Them and the Us and Them can be the team next door. It can be ... the early work I did around care homes in particular, you know, like the care staff and the catering staff. And it doesn't make one lot the bad guys. But if you're doing personalised care, what does that actually mean ... in terms of regular mealtimes, actually being able to order the food in to know what people want and to give them choice. But perhaps you've got a farmer who's used to getting up at five in the morning, perhaps you've got a woman with dementia, or man with dementia who wants to wander into the kitchen and peel the carrots or whatever. Health and safety. That's really where Whose Shoes was born ... taking real examples and thinking, we all want this, in that case, home ... people's home to be the best it can be. But what's the reality in terms of living there? working there? Or being a family member?

Cristina Serrao 35:35

But don't you think Gill, they are like buzzwords. So aren't they, because 'shared decision making'? I will be honest with you, from very early on, in my kind of long journey with my ankle, I've had three operations, it was always shared decision making about alternative types of treatments. I was a bit of a guinea pig. And yeah, I'm very well known in some places, because I screamed that clinic down. "But let's try it. It might work" you know, but had some quite radical interventions that kept me walking, thankfully. But for me, I looked back and I just think shared decision making, I was having those conversations because they weren't leaving that room until I got what I wanted to know. But I know ... Not everyone could do that. My mom would go in and just be like, "Okay, thank you, doctor", and that'd be it. And it was like, whatever the doctor said, was what went, so for me, having somebody say to me, " have you worked out which ankle replacement you want?". And I'll be like, blah, blah, blah, (my statistics) and he said, "No, you're too mobile, you 'd wear it out in a year, and so yeah, but I learned things like I can't, if I fuse my ankle, I will never be able to have a replacement. Whereas if I wait for technology, potentially I could have a replacement. And then if it fails, I still have the option for a fusion. So it's those kind of things, those nuggets of information I would never have got had I not had those conversations with very open minded surgeons who just one, you know, knew I wasn't gonna leave until they kind of answered some questions, but actually took the time to explain things to me. Because be honest, like, just give me a new ankle. Everybody has new hip knees and hips, you know, why can't I have a new ankle? And there was just like, No, it doesn't work that way. So you know, if there's anybody out there, anyone who can give me a tailor made like 3d printed titanium one, I'm willing to be guinea pig, I always say. I found somebody, I think it was somebody in India, was having one done. And then somebody in America contacted me and was having one done. And I was like, I can only dream. But even so, you know, it was an unusual break, from having that broken ankle to not walking for that many months, to then the impact of medication on me and opioid medication as well, coming off those. And I just think to myself, if I look back at my journey, and if I'd known what I know now, I potentially wouldn't have gastritis or potentially, the anaemia that I've got. They're all ... some of them are like they're related to the medication over yours. But if I hadn't taken those medication, would I still be up and about as much as I am? So it's looking at what works for you. And I think for me, it's always been that, trying to find that combination of what helps me in my health, and just being able to put my hands up and say, You know what, today's a bad day. I've got arthritis, when it's cold. It's not great, you know. And so the reality is having that openness, where I'm really fortunate in my role, you know, I talked about my physical health, my mental health, which means it comes as no surprise to anyone. And like you mentioned onions, because there is multiple layers, but really, sometimes I even go, I forgot that happened to me. But I think what's important is how you connect to people and, you know, the real fuel the real fuel behind why I'm here and doing what I do is without a doubt, my best friend Diane, and you know, I probably saving this to the end because it won't make me cry. And I don't do crying quite publicly, but the reality is, Diane was my best friend for years. We met, we worked at Marks and Spencer, Marble Arch. That's where we met. I was 16. Very fresh faced, she was older. And I have no idea what ever drew us together because we were chalk and cheese, without a doubt, chalk and cheese. But she helped me from when I went to study abroad on Erasmus. She was the person that passed me an envelope and said, "Look, I'll help you out". And I just feel like those things, those people that give that step up, that reaching hands, take it and just see where it goes. So for me, it is about giving back in whichever way I can. And, yeah, I try and keep true and sometimes none of us are perfect always. So either. Don't annoy me because then you'll definitely know I have not got a poker face whatsoever. So, so far, I've been really fortunate that if it gets to those situations, I've got people that have bailed me out.

Gill Phillips 39:39

Okay, so you won't believe what's going through my mind now. I guess when we do Whose Shoes workshops and people do their pledges, I've got this thing now that I pretty much guarantee, certainly in my mind, that I can add some value by linking them to somebody who's already doing it or somebody you know, within our enormous community and on Twitter and so on. It's lonely trying to make positive change on your own. And it's fun when you link with others. And it's even more fun when you make proper friends and magic mates and so on. But as you were talking just then, I'm thinking, oh my goodness, wouldn't an amazing, just extraordinary outcome of a podcast with Cristina be find someone who can make you a 3D printed ankle

Cristina Serrao 40:20

(Laughter) yeah, I don't know. I'd probably chicken out of the op. "I was only kidding, only kidding. Don't listen to me". You know, you know, just aside from all the jokes and stuff, you know, I've got a lot of love for a lot of people.

Gill Phillips 40:37

And me too. I have.

Cristina Serrao 40:40

And I think, I try and stay away from the negative because it's actually quite draining, it doesn't do me personally any good. And so I try and attract ..., you know, and you get drawn into it ... and I call them 'energy vampires', you know, they try and ...

Gill Phillips 40:53

I call them hoovers!

Cristina Serrao 40:53

Do you? So they're hoovers, yeah, energy vampires with their teeth heading for me. So eat a bit garlic and carry on moving on, because actually, I don't. I've been through too much to get sucked into all of that. I think I'm in a good place right now. I'm really fortunate that Kate's by my side and you know, we bicker like any other relationship but 15 years down the road. She hasn't walked away yet. So it's great. It's not easy being me. I'm not gonna lie. If you think it's exhausting listening to me, it's definitely exhausting being me. Trust me. So I think at times when people say to me "Oh, you need to take your break, realise how much all of this is part of my recovery and part of my keeping well, so it isn't just about fear of missing out but actually, I love it. And so for me, I'm going where the energy is and I always keep in my heart Diane, my best friend Diane Osborne and the fact I have responsibility you know, I inherited two, well they are young men now, they were 21. Tyrell and Kyle, I love them very much. And they are my boys now. So the fact that they you know, are high functioning autistic, I'm so proud that they went to university, one of them came out with a first, the other with a 2-1, one the year after their mom died. 10 years she was ill with kidney failure and dialysis and a failed transplant. And she always held her head up high and kept, you know, saying keep on going, she was always so proud of me. So for me, that's what's deep down. What's really deep down is not only giving back to the service that really helped my mum, when I was born. And I was born with a dent in my head. She said I thought, you were gonna be stupid. I was like, No, Mom, you can't say things like that. And I was like, Maybe I'm a bit like different, though. She's just like Hmmmm! You know, that's the translation, I won't tell you what she actually said in Portuguese. But I was born with a dent in my head, I've got birthmark on my face because I was hanging out with cancer for nine months. You know, if I can hang out with cancer for nine months in the womb, then you know, I can face anything, I reckon. So that's my philosophy on life now and seeing my best friend fight to get to the point where the boys were 21 - 10 years, you know - you've got to have fire in your belly to keep on going. When you can't, you know, you've just got to heal and keep on going after.

Gill Phillips 43:04

Yeah, this is just resonating so much with me ... my own cancer experience, the different attitude to life that I've had since then, in terms of ... I think I was always a bit of a 'life's too short for the rubbish' kind of person. But now I really am. And again, in terms of like going with the flow, and with developing Whose Shoes, I just want to connect with the people who want genuinely to make things happen. I steer away from meetings, I steer away from 'stuff'. I find ways of doing things that involve minimal stuff, and hopefully ... because apart from anything, it's more rewarding. It's more interesting for me ... We're giving quite a few shoutouts along the way. I don't know if you follow on Twitter, @SamMajumdar. He's a fantastic ear, nose and throat surgeon up in Scotland. And he's been ... we call ourselves like 'mutual mentors'

Cristina Serrao 43:56

That's great

Gill Phillips 43:57

I helped him originally with getting going with social media and so on. But Sam's got such an incredible philosophy of life and like "Gill, just go with the flow" and just building on that in a more gentle way. A lovely gentle guy who 'what matters to you' in terms of what matters to his patients, way before that was a, you know, hashtag just like it's just how he is. So, okay, so I dipped in, quite randomly I think, the other night at midnight. I saw Cristina jumping up and down and asking if we wanted to tune into Lemonade Radio and Mr. Whose Shoes was sitting there, Colin, and I think you put 'Stairway to Heaven' on for him which he very much appreciated. So tell us a bit more. I think it's time to tell us about Lemonade Radio and what's happening today, 6th of February.

Cristina Serrao 44:47

So I'm not gonna go into too much about the past but if you look at hashtag #LadyLXA, which stands for Lived Experience Ambassador, you'll get a bit of the history, but I wanted to wait respectfully for a year, to actually try and launch something myself also needed the funds to do it. So for me, prior to working for the NHS, I'd just gone bankrupt. So I've been bankrupt. So for me, I didn't even know if I could start a company, to be honest, so, just decided to, let's see what we can do and see where licencing etc, and it just ... it won't be a 24 hour station, because I still got a job, right? So I haven't convinced Kate to give up her art to, to like play all day. But the reality is, it's just a way of connecting. So, you know, when I was on the radio before, we did love talking, just connecting people and coproducing playlists and things like that. And it just became a bit of a game really, like, you know, somebody plays, I want this song for this person, a shout out, and then they will send me it and I'd be like the go between, and they go, "oh, this is what they're saying". And, and I just think it was just ... it broke it up a little bit. It broke up what was a very serious situation. And what I realised was it's just a bit of fun. And, you know, I'm not great, the whole technical bit, I'm still learning but from that, what we realised was the people that got in touch with me over the last year, when are you coming back on? And actually, not just about the energy, and I can get even more silly, especially if you give me a glass of wine on the radio, but I get even more silly, but the reality is ... there's no agenda. It isn't about, you know ... I just want to connect with people. And I'm really honest about it, my agenda is quite openly out there. It helps my sleep. You know, it helps me and my PTSD. It just puts my head somewhere else so that I'm not overthinking things. And I just love when it comes ... some songs, it takes me back and I'm like, wow, I forgot about this song. I don't even know this song. You know, my parents are Portuguese. Like, did they really listen to this stuff? I don't think so. So I don't know the words. So yeah, it's really quite funny and it gives me a chance also, to go back to my roots a bit because, you know, I'm very proud of being Madeiran. Medellin as we say, we are a Portuguese island. But the reality is, we're very different to mainland Portugal. And so if you don't know where Madeira is, it's where Ronaldo, the footballer's from, and we are just off north-west Africa. off the Moroccan coast, above the Canaries basically. And so it is a little island, it was one of the poorest, poorest places in Portugal, one of its poorest states. And so now it isn't, thankfully. My dad left, he left my mum, my sister was one month old, and he left to come to Jersey, in 1970. And, you know, they did 30 years here. And we said, you know, sell up and go home, you know, like, and it was like, Well, what's home? Make something and do something, you know, and that's what they did. And they've just celebrated 20 years. My dad told me when I was there a few weeks ago, that actually he thought he only had five to 10 years, you know, left in him because of his health. And he went out there and you know, 20 years later, I'm really quite fortunate that they're still here. So for me, they've always taught us to work hard. And if something's not working, just change it and do what you need to do to kind of survive because we come into this world alone, we leave this world alone. So I think it's really important to do what you can to help others while you're here.

Gill Phillips 48:03

Cristina, that was amazing. So if I want to plan my day today, then what do I need to do? When do I need to be around? is anything exciting happening?

Cristina Serrao 48:14

Absolutely. So today is my mum's birthday. Happy birthday Mum. Basically, today at 5 o'clock, I'll be launching Lemonade dot radio. So it's www.lemonade.radio. When you go on, just press listen. And you should be able to find it if you look on Twitter, you'll be able to find it all. J ust follow the lemons, if it's not through Whose Shoes, just follow the lemons, you're bound to find some tweets, but yeah, lemonade radio UK. You'll find me on there. And if there's any special requests, then please do let me know just send me a direct message and please yeah, follow along and let's see where we can go with this. It's just a bit of fun. And I just want people to reconnect and just you know, remember some good times so you know there'll be some funny shows. I'm planning the 'sweet and sour hour' which will be either like songs that somebody that you sweet on or for your ex that you're sour on. So yeah, I told you, it's gonna be Cheesy Squeezy. For sure. Yeah, and there's a few other ideas you know, lived experienced ladies, we're still working on that. But yeah, watch this space. I won't say more yet.

Gill Phillips 49:23

Enormous Good luck with it all. Cristina, you know, I'm not particularly into statistics, but I hope you get lots of listeners. And I know you've already got one very special statistic - which is number of listeners bouncing on a waterbed - one!

Cristina Serrao 49:35

That was so random, wasn't it? I was just like, I didn't even know she had a waterbed ... I won't name her, but I was really, I was like, wow,

Gill Phillips 49:44

So thank you for talking to me today, Cristina. It has been amazing and wishing you every success with Lemonade Radio!

Cristina Serrao 49:51

Thank you so much for having me. And really thank you for everything you're doing to make sure coproduction is still on everybody's lips. It's great working with. Thank you.

Other 50:01

What was that? Lemonade. On the radio? Oooooooh. w w w dot lemonade dot radio.

Gill Phillips 50:15

I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favourite podcast platform. And please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me. And let's hope that together we can make a difference.

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21. Cristina Serrão - Lived Experience Ambassador - Wild Card - Whose Shoes?

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Today I am talking to #LadyLXA. Cristina Serrão, host of Lemonade Radio,. Cristina pushes the boundaries and uses lived experience to drive positive change. Expect the unexpected from this energy-packed, inspirational podcast guest. Cristina is in the Shaw Trust Power 100 and a fantastic role mo...

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Episode 23. Angela Cornwall - Speedy Boarding. The passport to top health care

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Episode 23. Angela Cornwall - Speedy Boarding. The passport to top health care

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NHS England 'lived experience partner' Angela shares her practical ideas and experiences, caring for her daughter who has a very rare condition and her son who is autistic

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Gill Phillips 00:11

My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to co-production. I was named as an HSJ 100 Wild Card, and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

Gill Phillips 00:46

Today I'm talking to Angela Cornwall. She was introduced to me by Carol Munt, my podcast guest in episode seven. Carol knows exactly what I'm trying to achieve in this podcast series, and she said I must talk to Angela. I'm so glad she introduced us, as Angela is another Wild Card, using her experience as a family carer, to make great things happen. To come up with ideas that would be really helpful to other families. But as is so common, finding it difficult to get her solutions adopted to benefit as many people as possible. We will definitely talk about 'speedy boarding'. It makes so much sense. Angela brings a wealth of experience, is very practical and proactive and, like Carol, full of common sense and wanting care to be the best it can be and cost effective. I know Angela has also got some really interesting changes going on in her life and some amazing plans for the future. I'm looking forward to getting to know her more today. So welcome, Angela. Can you tell us a bit about yourself, and what's important to you?

Angela Cornwall 01:57

Oh, hi, good morning. My name is Angela Cornwall and I've been a carer for 35 years for my daughter who has a long term condition called Diamond Blackfan Anaemia. My daughter has to have transfusions every month. She's had them from the age of one, and she will do to the end of life. Natalie also has other complications with her health. She has cardiomyopathy with arrhythmia, and she also has an ICD fitted. Through caring for my daughter, you can imagine the amount of wealth of information and learning and stuff that I've done within 35 years of caring for her, the challenges that we've also face as being a parent carer. Natalie has multiple conditions, which makes it very challenging for everybody, not just myselfand but Natalie, but for everybody, the clinicians and every one that kind of crosses Natalie's path within her care. So I decided to design a 'passport of care' due to the challenges and the accessibility and the time wasting and the stress and the anxiety and the cost and effectiveness within the NHS of the way that care was being delivered. I then kind of designed a passport, a strategy of care for my daughter because what we were finding was that we were accessing care and protocols were in the way and when protocols are in the way for example, what I mean by this is, one time Natalie's blood count can go from 12 to 7 within 24 hours. So her haemoglobin drops very quickly. This means that she needs a transfusion, and it becomes life threatening because all it does is drop. That is part of her condition. We was told one time we don't transfuse on a weekend. So you could imagine my anxiety that came with 'we don't transfuse' because that was the protocol. We don't transfuse and I said well if you don't transfuse this young lady by the weekend you're going to have a different, you know, it's going to be a different ballgame altogether. So with all my knowledge and stuff of looking after Natalie, through being a young person, to now adult services, and now Natalie's independently looking after herself, but for all my experience in kind of involvement engagement, I was very much a very proactive mum. I was very engaged in Natalie's treatment. I was always asking questions, and we wanted to know and we were very engaged in Natalie's condition. So much so at Alderhey we were the first to do portacaths at home. My biggest concern was my daughter will be under the NHS for all of her life, from the day she's born to the day she dies. How much time do we need to be spending here, you know, I was very scared of her being institutionalised and obviously spending more time in hospital than, than she did, you know, having a normal life. So we kind of engaged with our services to, you know, do portacaths at home Alderhey trained me, I was very keen as a mum to do as much as I can, for Natalie. And I wanted to learn, I was very keen to learn about her condition. She had portacath fitted, due to being transfusion dependent, and obviously Alderhey trained me to, to do the portacath, which was, you know, absolutely for me as a parent, that was just brilliant, because we didn't have to spend that time in hospital. Because if Natalie spent time in hospital as a young, as a young person, obviously, I had to. You know, I found by being involved and engaged in Natalie's care, I found that we had more control and we could work together with the health team as well. So, which was really important for us, because we wanted to learn everything and we wanted to know everything about her condition. Also, what consultants never knew and practitioners never knew, you know, we also helped them as well to understand her condition. Because when Natalie was diagnosed, she was diagnosed with an orphan disease, meaning it stands alone. You know, I was given a piece of paper, which only a consultant doctor could read. And that was my only information I was ever given. Because there was nothing, nothing at all, about, you know, about Diamond Blackfan anaemia. The only report on it was a clinical report, which only when the consultant, it was actually a professor that gave it to me and said, Angela, you will not understand this, because, you know, it's clinical and I just said give it to me, I will try. And, you know, it literally was trying to look at a completely different language, it really was. But I was grateful for that. Because for me, that was really important. That was the only information I ever had. And if I had to hand that to another consultant, then he would understand it. So it was a really good link for me, even though I didn't understand it. So, for being a carer for Natalie, for 35 years, you know, we face a lot of challenges. You know, I was a hands on mum. I cared for my young baby, I cared for my young adult. And obviously now Natalie's, she's living independently, so I don't need to do that now. But we face a really lot of challenges. At two points, Natalie nearly lost her life, she went into cardiac arrest, I had to do CPR to keep my child alive. And that was at home. And, you know, we really did have some challenges. And I, you know, I think one thing that I would like to say is that, don't look at that anxious mum, as an anxious mum, you know, the anxious mum is anxious simply because she knows she's educated enough. You know, when you are looking after your family with long term conditions, you are taught by the experts. You are taught by the experts.

Gill Phillips 08:38

As you're talking, I can see how those different experiences led you to come up with a passport of care and having that clinical information that perhaps didn't make total sense to you, but would work for somebody else, to get it straight to them to bring in your personal experiences, your knowledge of Natalie and the condition and so on. So tell us about the the passport and what your dream would be for that.

Angela Cornwall 09:04

So my vision for the passport is it's, it's tough. Being a mum, being a mum caring for a young baby, adult. It's challenging, it's challenging, it's tough. We just want just to go into any health care and access a service that is quality effective for the patient, cost effective for the NHS, and a simple system. We don't want to go and wait in A&E because we don't need to wait there eight hours in A&E. Because if you look at our strategy of our pathway of care, we can show you well if you just do this, and you just do this, and you just do this, and you just do that. Every person's care. You know, I have a saying, one coat doesn't fit all. So look at the need for the person that you're dealing with, you know, look at their needs, look at what is going to make it effective. No one wants to be an A&E longer than they need to, no one wants to be on a ward. My daughter now collectively collaborates with her team and her team collaborating collectively work together. From the minute she goes in to have her treatment, to the minute that she's finishing, it's effective. There's no time wasting, and there's no money wasted. There's no life at risk. It is effective. It works. And it's just in and it's just out. So the reason for me for the passport why it was so important was because they were the challenges that we were up against, and also respecting the NHS. I had a massive issue with the money that was wasted. I could not believe it. It was ching ching, ching, ching, ching, and the quality affected my daughter's life, was affected by that time wasted. Because that meant that she had to spend more time unnecessary, in a place where she, we struggled to get her there in the first place. So you know, it's with young people ,as adults she's fine, but as young people, it's very difficult to when you are part of your management of managing a condition long term, is to make sure that it is effective, because mentally it's hard enough for anyone dealing with a long term condition. So let's not make it harder. Let's make it easier. Let's make it a pleasure, as much as you can say a pleasure, rather than trauma. Let's take the trauma out of things going wrong, you know, waiting in places for hours. Why do we need to be in a hospital? I remember one time, I couldn't understand why we had a week in hospital. Appointment on Monday, appointment on Tuesday, appointment on Wednesday, appointment on Thursday. And I'm like we're here on Monday. Can we spend the day here? Can you get the ENT people? Can we get the haematology? Can we get the heart people? Can we just make it ONE day, and we started pushing for that and Alderhey worked with us. I've been using passports for the last five, six years, maybe more. And we've always worked collectively with our team. Our team respect our knowledge of the condition. I respect them as clinicians, and we totally have a effective system that works for us. Because if I did not have that system, I think I would have folded myself as being a parent carer. So the passport for me, and for Natalie was immensely needed. Because it was just sad to see time, money, quality of life, you know, being affected by something that was just so simple.

Gill Phillips 13:13

Yeah, this is amazing, Angela, and the face that's going through my mind. And it links back to a podcast that I did with Rachael Grimaldi, who invented CardMedic. And very similar in a way in terms of something that you think well, this is so simple that surely somebody must have thought of it beforehand. Then the phrase I came ... the phrase I came up with Rachel was simply brilliant. Now, that's what I'm hearing here that it's simple. And I love simple things. And it's brilliant because it meets all those different objectives. And I'm thinking, Well, hang on a minute, nobody wants to wait in A&E. But then in this case, each minute that passes, each hour that passes, it's dangerous, you can see that you know what needs to happen. And also you've got a young person or now a young adult. And in terms of what it means to them, none of us want to wait in A&E but for some people, it's particularly difficult or impossible, and making everything, everything worse. So I'm really intrigued by the passport and I'm sure the listeners are as well. So what would the passport look like? I come to hospital and I've got this document.

Angela Cornwall 14:25

Yes.

Gill Phillips 14:25

Just talk us through that.

Angela Cornwall 14:27

So the document basically will just be a passport identifying the patient. They have all the normal numbers, you know the NHS number, and then it will have a strategy of care. So for example, Natalie's one is clinical, Joel's one, because he's autistic and LD, his one is a bit different. So the clinical one is ... so Natalie goes into hospital, and if she's got to go into A&E, hi, my name is Natalie. Then it has all her details that she needs. Then it also has the team that look after Natalie. So it has her cardiologist, it has her hematologist. It has everybody that looks after Natalie, there's their point of call. If you're not sure, as a consultant, you refer, you refer to, to this number here,.You refer, and you speak to the haematology team, because they know Natalie. But also, if you engage with Natalie, Natalie knows her condition too. So please respect the fact that she actually knows her condition as well. So collectively working together with that team, communication, and that passport will put you on a pathway where it will tell you. So she'll call her haematology team. She'll say right OK I'm due for a crossmatch. They say right Nat come in. She'll go in for a crossmatch. Then they'll crossmatch, and they'll say right transfusion the next day, depending on her Hb. So the pathway just identifies the clinical need, and it puts everybody in contact with who needs to be contacted. So if a consultant is not sure, then he can phone the haematology, he can phone the consultant for the heart, you know, depending on whatever their clinical need is. So it basically is an easy strategy just to go through any system, because protocols don't suit everybody.

Gill Phillips 16:23

Things like "we don't do transfusions at the weekend". That is not a patient-centered protocol /pathway.

Angela Cornwall 16:30

Yeah. Especially when Natalie's condition is so rare. And I'm like, Have you ever heard of Diamond Blackfan Anaemia? No, I've never heard of it. Okay, so you've never heard of it. So at that point, that pathway would have been perfect. And this is why it's designed. Because you need to know, you need to know what Diamond Blackfan anemia is, and you need to know what to do. So for us the passport was, you need to know it, and you need to know what to do. If you're not sure of it, then we'll teach you. We'll show you, we'll put you in contact with people that know the condition very well. We know it very well. We're collectively work together as a team. So there's no mistakes made.

Gill Phillips 17:09

And I would imagine that with very rare conditions fora clinician to say I don't know, is a sign of strength, because they couldn't possibly know all about everything., Rather than assume that they know things and then do something which could be very dangerous.

Angela Cornwall 17:24

And then at that point, because when Natalie was younger, I started a charity called DBA. UK. And it got everyone together to communicate and speak together and support each other through the journey. Because one thing that we did identify with Natalie's condition, it was a serious condition. And it was a bone marrow defect, you know, she doesn't make red blood cells from the bone marrow. And back in the days when she was younger, the only option we had was a bone marrow transplant. But we refused that one. So it was a serious condition. So we also had to communicate with everybody. And putting everyone in contact it spread the knowledge, I respected a consultant that stood in front of me and said, Well, I've never heard of a DBA. And I'm like, Okay, well, here's a link. If you're interested and you want to learn about it. Then there we go. There's the experts, learn about Diamond Blackfan anemia, because you will meet these young people, they are going to be in your health care, at some point they are going to be and now I think there's quite a lot. Now, I'm not sure I'm not looked at the numbers on how many diamond Blackfan anemia. But on the support group that we initiated it. There. I think there was about 250 in the UK. So which was a fair, good amount. But also that was really important for information like the NHS, it was important for doctors to tap into and understand about the condition and make links with doctors that specialized in it as well. So yeah, yeah.

Gill Phillips 18:59

And you're just mentioning in passing, setting up support groups, that must have helped so many others because it can be very isolating can't it, to have something that's really unusual and to come together with other people who really understand.

Angela Cornwall 19:13

It was really important for me, because I'm a talker. And I think collectively people work together. It's easier. And I suppose had this vision for just pulling a group of people together. We were just 4 parents, 4 children who had the same condition. And then after six months DBA UK was born. We wrote up a constitution. We got it into a charity status. And I think now there must be about 400 or 500 families on their books. So my vision for that was also for the children because it was really tough. It was really tough having a transfusion every month and typically and I identified that. And I thought, wow, it's a tough thing for a baby to have a transfusion. Yeah. And I thought, we need to bring everyone together, we need to kind of unite with this and talk about it and support each other and let the kids forget about having a transfusion. And that's why we chose the PGL center in Lincolnshire, because it has activities, kayaking, and they was doing the stuff that, you know, these kids spend a lot of time in hospital and that just be normal for the day. Let's do some rafting and kayaking and sit around a bonfire and get some marshmallows because these kids spent so much time in hospital being transfused and prodded. And, you know, because there's other complications, there's, it's a long journey, it's a long clinical journey. So it was really important. So that was my vision, mainly for the children to relate with another child that had the condition and understand that you're not the only one there really. And it was also good for the parents. Yeah. It was really nice to meet other parents and give them some hope. That things are changing, we're all pushing for change, we want things to change. And Natalie is 35, you know, and it's given other people hope that is bad as it sounds, life's does still go on.

Gill Phillips 21:25

Because it's all about quality of life, isn't it. And I think the way that you've described can hear a phrase like my child's got a rare condition. But thank you for sharing that, Angela, because I think for people to hear what that means for the child to have a monthly blood transfusion or whatever it might be. And they're just children, they're children who want to live the lives that other children, so to be able to bring that normality to them, and bring them together with other children who really understand is such a wonderful thing to have done. And the other thing, we've talked about Alder Hey in passing, yeah, and I know, when we had a chat beforehand, I was really kind of got those goosebumps around the work that you've done at Alder Hey, because I'm proud of the work that we've done with Alder Hey around Whose Shoes and true coproduction and leading ultimately to a new neonatal unit. And so I've been to Alder Hey I've been with Helen Calvert, the mum who introduced us and Joanne Minford, the wonderful paediatric surgeon that I was working with who's just been transformational. But you were involved in the actual design of Alder Hey. And I remember the story you told me about, why would you design it with four walls? Tell us a bit about that.

Angela Cornwall 22:39

So I was at an appointment with my daughter, and you know, as you do very vocal positively, the best I could be. And we were looking for a consultant who was for my son. And then this lady passed me she said I'm so sorry. She said, I've overheard your conversation and, and stuff like that. And she said, I totally agree with what you're saying, we have the same issue. So then my son got an appointment. And then I got a phone call. She said, I really hope that you don't mind me contacting you, but the chief exec ... the points that you were raising when we were communicating, and were really important, and we'd like to invite you to the 10 year strategy build for Alder Hey So she said you we'd like to invite you the chief execwould actually like to invite you. How ..., you know, would you like to attend? So I was like, Yeah, that's fine. Brilliant. So off I went. And I'm a practitioner by trade, because part of my programme for myself was to educate, educate, educate while I was caring because it was my normality. And I went into the boardroom, sat with, chief executives, directors. I think there was another two parents there as well. They also got invited and we shared our views around the board table what we thought as parent carers, we've been an Alder Hey day for a long time. And you know, obviously we would be there for a long time. And as a practitioner, I believe that I sat with Natalie in all of her times when she went to surgery from a cleft palate and from when she had an IV porta calf and picc lines fitted I spent a lot of time with Natalie, all the time she spent in hospital so did I and fabulous obviously the work they do is absolutely just life saving and amazing work they do, but your environment is everything. And the four walls was just not... it was it was just not right. It just didn't feel right. So when they were doing the new build for Alder Hey what I explained was that, you know, visually a child will he'll know if they see things if you're In just like a surrounding four walls, you know you're healing process you're ... your mind is not going to be active, you're not going to be looking at things. And for me, the vision was was to bring the park into the hospital, because it was just a ward. And it was very gloomy. It was just clinical, it was just medical, it was just the nurses. But it was also my vision for it was to bring in the outside world a little bit into the wards for the children. Because as a practitioner, holistic practitioner, visualization is really important as part of the healing, it's part of your well being. And that was not in the ward. So by bringing the park and making the front of the hospital glass, the children could sit on the ward, and look outside and see the real world moving. Because it's almost felt like the segregation from the real world and a ward. And I thought part of healing, let them see the real world let them see the lady coming with her two dogs every morning at nine o'clock. You know, and and the builder walking across the park with his hat on going to work and all the cars and the kids going into school. That was real, that was the real world, you know, it took out the segregation from being well. And I believe that by adding that to the ward, it would be happier. And if they're happier, they're going to heal quicker. So initially, you won't have bed blocking, you won't have sick children being in places longer than they need to. Let's get them healed and out as make it a happy experience. It doesn't have to be doom and gloom, it doesn't have to be sad. Let's just make the two worlds meet an, you know, and open the front hospital up, bring the outside in.

Gill Phillips 27:05

So that's another simply brilliant idea, isn't it? How simple just to be able to see life. And it reminds me I think a podcast you might enjoy Angelo, I did one with Joan Pons. Laplana, who tweets as @roaringnurse, which gives you a clue about what he's about. And a part of his story was literally ... and obviously taking a risk in terms of his job to some extent and what you're allowed to do to rearrange ITU so that a young man could see out of the window, because that's what he'd said mattered to him. Yeah. And he said that as soon as that happened, that the the guy started to heal in a way that was not anticipated. So powerful.

Angela Cornwall 27:46

Totally, and I and I'm glad I took them actions with my daughter, because that's the way that we done it. Because I used to take her out even with a transfusion, I was taught how to, she had an IV transfusion that would last for ... first unit of blood lasts for about three hours. So we'd go for a walk because I was trained, I had to be trained to lock off the transfusion. But we were allowed to go for a walk because that was that's what was important to us to keep engaged. Just wanted to take the institution away from health care, it needed to be a better journey, because I just felt that as a parent that needed to be done. You know, Natalie would often stand on the back of her IV transfusion. When Natalie was transfused, it was the IV with the little wheels and you'd wheel it down and I'd stand her on the back. And, you know, we'd have fun with that, you know, not everyone was pleased about that. But I was trying on the ward to identify if anything was going wrong, you know, so I knew how to ... the reason why I asked them to train me is because Natalie was getting very bored in one place. So her behavior was starting to change, her mood was starting to change. I need to take this child off the ward, and I need to be moving somewhere. Just, can we go to the shop, you know, in the hospital, let's just ... can we just move with people. So show me what to do. What's the safest way I can do this. I need to do this. And they taught me how to manage that. And we would often go to the shop. She would stand on the back of her IV machine - she'd stand on the back. And it became a game, it was fun. It was fun days. It wasn't traumatic. It wasn't a sad experience. We created fun with what we had. And they were the good old days.

Gill Phillips 29:49

And as any bored child would, you know, if they're bored, they're going to play up whereas if they're having fun, being wheeled along with mummy and having a laugh then it is so positive All around, and it links Angela, again with another podcast you might enjoy the one we've done around family integrated care. And that's with Nadia Leake and Rachel Collum and they're two mums. And they're talking about exactly what you're saying you know being trained with medical procedures right from the beginning. So that you can be a proper mummy, proper parents, to your child and feel confident and taking that possibly premature or sick baby back home after the neonatal experience. And being able to be to feel like you're the mummy rather than the theoretical mummy of this hospital child, it very powerful.

Angela Cornwall 30:40

Yeah, I was very engaged in Natalie's condition, because I just needed to be engaged in it, I needed to know where we were going, I needed to manage it, I needed to support Natalie, Natalie would then want to learn about it. And she now lives very independently on her own in her own apartment. And yes, she has little ups and downs, no complications. But considering we were told she'd never make it past five, and that was 30 years ago. And well, what was very important for us as well was a consultant actually explained this to us the other day, he says, when Natalie was younger, it was really important - I said, there's two ways we can do this. Now either your condition controls your you or you control and your manage your condition. And that is what I taught Natalie, from a very, very young age. And her consultant stood in front of us. And he said, clinically, Natalie should not be here. He said, and we've been baffled as to why she's still here. He said, and the only conclusion that we all saw, is the power of how she thinks. Yeah, and so this was living proof that having fun with her care and treatment was really important. And keeping it real as possible is so so important, you know, not taking away the reality of the normal world, you know, sometimes people can get bogged down with the clinical and then it becomes quite, it can be a sad time, or it can be a happy time. You know, it's really important which way you are looking at, and this is why, for us effective care that works is important. It's important for the patient is important for the carer, it is important for the NHS, the NHS is the cost, the carer, my mental stability is very important to take care of my child. If I'm not well, then I can't take care of my child, my child's quality of life is vital. So it's an all winner, you can't lose. It's an all win.

Gill Phillips 32:44

Well, I'm loving this conversation because having fun, and not just for children, for all of us, people at work, is a big part of what I do. And in terms of firing people up to think that it doesn't all have to be difficult, pathways and procedures. It's about just seeing the human side of things, and firing people up to think that they can make a difference, just as you're doing. I mean, you know, I think you've understated your story. And you know very well, that obviously it was Natalie's thinking but it was having a mum like you who didn't take no for an answer and who didn't just roll over when they said your child won't live past five. And it's a fantastic thing that parents are people who love their children, who get labeled as if you like family carers, but it's the love obviously of your child, the children that shines through, but it comes at a cost and everything that the NHS can do to work with you and support that and recognize that and keep you well and having your own life as well, rather than just be totally consumed by the carer role. It's how to tease out that isn't it and all work together for quality of life for everybody.

Angela Cornwall 33:59

I think that's why my outlet was to study. So I was doing holistic therapy. So the nurses were absolutely made up because my training days they would all be getting treatments. You know, when all the kids were asleep and we'd be on the wards as moms I'll be right that's it. You know, I'm doing therapies. Who wants one? It really,. It really did work. But one thing I will say I mean for Natalie's one, was really important because there was a clinical need but my son is autistic and he's Asperger's autistic and, you know for mental health, also the passport was really vital is where speedy boarding came as well, because I was working in mental health services young adults, young children, and I could not believe how hard it was to access their health care. It was absolutely, my jaw hit the floor. Because I thought wow If this child does not have a pathway, the child cannot access its health care, simply due to the autism, the sensory overload. It is so difficult for patients' clinical or mental health. And these passports are vital for accessibility and quality.

Gill Phillips 35:27

And I think you were talking about children, was it in a residential setting?

Angela Cornwall 35:31

I think it was challenging. So for young adults who have severe challenging behaviors, severe meltdowns, they can go from two staff members to four in 0.0 seconds. And it was finding a way of .. I was asked to take a young person to hospital and because he had not been successful, and I was like, right, okay, I understood autism because at that time, my son was 21. Second year in university, just diagnosed with autism, Asperger's, ADHD, dyslexia, dyspraxia, and I kind of understood that anyway. And I kind of see the challenges I was asked to take this young person to hospital, because obviously due to the behaviors and and stuff like that, it was not easy to access. And because of my knowledge of autism, Aspergers, and mental health, as well, because obviously, a lot of my qualifications now are around that, I understood what was needed to do. So for him, the waiting room was not an option, not an option at all. You had to worry about safety of others, staff, us, anyone else who's around, because if that young person went into a complete meltdown, then it would be aggression, it would be violence, because obviously, just due to the anxiety and stuff like that. So what we found was, I designed the passport around, it was a sensory, sensory, so we identified what was going wrong, looked at what was going wrong. And we rectified that. So the issue was, obviously was around sitting in a waiting room. We can't sit in a waiting room, the noise, smell the amount of people activity for this person, it was not an option. So I said, Right, okay, because, at one point Natalie couldn't sit in long waiting rooms. And we had a bout of that for a very long time where it just wasn't working. So I said, Can we come at the end of clinic? Because it's easier, we just come in through the door, see the consultant, and then we go. So I kind of use that same method, where we say "the last two patients, can we be one of them last two patients?". When we went into the appointment, we need someone who understands about autism, because I have a autistic person here. And we have to get it right. There's no room for error. If we don't get this, right, we have a sensory overload, we have an overload, and then behavior will change. And then we're in trouble. We need to exit the building. So we need to get it right, right from the minute we walk through that door. So what I requested while I knew the team at Alder Hey anyway, because obviously my engagement with Natalie. So we worked with the learning disability nurses, and we said, Right, we're coming in, so we'd had a consultation the day before. We're coming in tomorrow, this is the time she will meet us at the door, go to the door. And then we'd go into see the consultant. So rather than sitting in, we had a sensory room where it was just sensory based. So while we were waiting that 5-10 minutes, we had a sensory room which controlled the behavior, and also identified the need for that young person. Because obviously, that was what was needed. And it also kept the young person safe. And it also kept other people safe. And it was the first time in a very long time that that young person actually had any medical attention, because it was always a challenge. You know, it was always a big, big challenge because everyone was always worried about behaviors and the risks and stuff like that. So when we actually got a heart scan yet again, it turned into play. It turned into excitement, it turns into Wow, look at what this machine does. It was engagement with that young person and looking at you know, wow, look at this As you know, how amazing is this machine, it can look at your heart, look at your heart beating, and it was involving that person with their care. And yet again, back to collectively working together, involving the person with their own care. And the fascination was there. So we had a gap. But at that point, we had that gap time to get that trick, get that get in, what we needed to get in was the ECG. And it was done for fine, you know, and it then became a great experience. It wasn't complete meltdown, complete bad behavior, it was something that that young person ... and I said, all you need to do is engage him in his care. If he understands what is going on. And he's safe, and he feels safe around his environment, you won't have no problems. And that's exactly what we've done. And that pathway was effective. It worked. And, well, I think we attended maybe four appointments, when it was a complete disaster. And my son's autistic as well. And it's so important, there's nothing worse than, you know, and this is what I was doing some work with my local GP surgery. And I was saying, because I have Joel my son, Joel is autistic. So he had an appointment, and then he's called me and he's just put the phone down, because he's like, Mum, I can't deal with it. And I'm like, right, okay, and what's your problems? You know, and he said, the doctors just not understanding. I said, Okay, fine. So I requested my GPS, if someone is on hand, had autism awareness, so they are aware, you know, it's so important that awareness goes in, the doctors need to be understanding that autistic are uniquely different people. And they need to be respected for that, rather looked at different and not everyone understands. That way. You know, sometimes you have to change your way to make care work more effectively. And if that person has that need, like for my son, if you explain too much to him,there is too much information. You know, if you just say, Joel , go to the doctor's pick up the form, and get a blood test. 10 o'clock. That's it. So it's understanding. So I was asking for people to be educated around this, you know, and because that's the first point of call, isn't it? When you walk into any GP, doctor's surgery, hospital, if you've got no one that doesn't know about autism and mental health, then you're going to be in the protocol, which probably is not going to work.

Gill Phillips 42:58

So I think, in the last 10 minutes ... people talk about personalised care. And I think in the last 10 minutes, you've probably given a masterclass what it actually means, you know, like, in terms of preparing the appointment, you know, something really simple, like, the last appointment of the day, someone's gonna get it, so why not the person who actually needs it?

Angela Cornwall 43:21

Yeah, because I just feel that, you know, a lot of trauma, you know, hospital shouldn't be about trauma, but it shouldn't be that mentally stays with them, young people, it's gotta change is gotta be it's gotta change ... a positive, happy experience. Because the effect from that psychologically has got to be a lot better. Why should hospital be the place that you want to run from, you should initially want to go there because you understand what's happening. And I just feel that it shouldn't be a negative experience. It shouldn't be a bad thing ,it should be effective for everyone, you know, patients, NHS, whoever it needs to be, the staff.

Gill Phillips 44:07

Families. Yeah, I had the other side of the coin with my mum when she was early 90s, poor mobility at the time and needed a lot of help and being offered a, you know, sent a hospital appointment at 8.20am or whatever it is in the morning, you know, it's just not gonna happen. Yeah, just not gonna happen. And the level of preparation and anxiety and parking and goodness knows what, that will go around that. So I think the phrase is, it's not rocket science, is it?

Angela Cornwall 44:37

And yeah, yeah, it's not rocket science. And I think when you calculate the waste, whether it be time, effort, money, the calculation of that is a massive, you know, it's absolutely massive. And if people were to go back to the drawing board and look at that, ...hospital should be "okay. I'm not feeling very well today, I identified that I do need to go there or medical clinicians identified I need to go there. So I will go there". It should only be used for the purpose it's built, you know, it shouldn't be used for any other thing other than the purpose that is built for, you know, that's how I see it.

Gill Phillips 45:23

So what a conversation.

Angela Cornwall 45:26

Yeah. And I also think that, like carers, I think we should be recognized for what we do , the input that we have, the knowledge because what the NHS has to understand is that you trained us, for the mothers and the fathers and the carers, the caregivers, who look after sick adults and choose to take that role in their life. They need to respect that they trained us, you know, they trained us so they have to respect our words. Our knowledge is not from Google or textbook, our knowledge is from what we've been taught by standing with possibly some of the best clinicians in the in country, in the world, you know, and that information is come back to us and I think the NHS need to identify that that there are some families who are very proactive in looking after their sick family members, and they're very knowledgeable, we need to have that respect because it's not just being that mum, you know, or dad or caregiver,it is the knowledge that comes with us, some people are really keen to understand and know about the illness and my life now is based upon, you know, I'm now going to write books and become an author, I'm a holistic practitioner. You know, I've got my qualifications around mental health. My gosh, my clinical knowledge is just literally just, you know, amazing amount of stuff I've had to do and IV ports Cathy I have done, saved Natalie's life. At one point, she went into cardiac arrest, and I had to do CPR to keep her alive. And so my whole life is now clinical. And as a parent carer, I'm very heavily engaged in planning services with our CCGs. And, and making quality care assurance really is a is really important to me. So that journey that I've took with Natalie, and Joel is really sort of like made me who I am today and I'm now going to move to Cornwall on the 25th of this month. I'm a practitioner, my children are fully grown. They're all in their own homes and living independently and driving and doing what they need to do best. And I'm now going to take my knowledge and my training, and I'm going to start a retreat in Cornwall, and become an author and still stay engaged with the exp by experience. Because that, to me is quality,it is a passion. And it's really important. And I just think that's something that I always do. It's very important to me, yeah, just take life a little bit slower.

Gill Phillips 48:22

So I think we've got a whole episode in the future about your life in Cornwall, I think we can't go into it now because it'll be ... the retreat, I think is aiming to help children and give them a great experience. I've got my links with the fabulous teams in Cornwall around healthcare and specifically maternity care. So, you know, I'm sure that our stories are coming together more and more. It just seems extraordinary that our different experiences, but very important in our lives in Alder Hey and our future stories in in Cornwall, and the fact that your name is Angela Cornwall is just a bonus. So, so thank you, Angela. I think it's such an important contribution that you've made there. I'm trying to get now that ... you know, people say they want to listen to lived experience stories, they want to hear from family carers. And people on this podcast series are contributing that so knowledgeably and so generously, so let's get people listening to these podcasts and make a difference.

Angela Cornwall 49:28

Fabulous. Thank you very much for inviting me.

Gill Phillips 49:31

I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favorite podcast platform. And please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me. And let's hope that together we can make a difference.

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23. Angela Cornwall - Speedy Boarding. The passport to top health care - Wild Card - Whose Shoes?

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Today I'm talking to Angela Cornwall. She was introduced to me by Carol Munt, my podcast guest in episode 7. Thank you Carol!Angela is another Wild Card, using her experience as a family carer, to make great things happen. She designed a 'passport...

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Storytelling and music - what a combo!!

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My name is Gill Phillips, and I'm the creator of Whose Shoes, a popular approach to co-production. I was named as an HSJ 100 Wild Card, and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you. When I first started the podcast series, I had no idea really how it would evolve. My original idea in creating Wild Card Whose Shoes was to hear different voices, find new ways of telling stories, find new stories to tell a bit of creativity, and hopefully inspire people who should be listening, to listen.

So how's it all working out?

I've been reflecting on this a lot over the last week. My head's been a bit crazy with all sorts of thoughts and ideas. Three separate strands I think have been part of my week or, perhaps Monty Python style, it might probably turn out there are more than three. I don't know. We'll see. So last week, Cristina Serrao, told her story on the podcast, episode 21. It's a big story and telling a personal story is always a really courageous thing to do. It feels risky to put stuff out there and share things that are sometimes deeply personal, and perhaps haven't been said before, hoping to support and encourage others who might be going through something similar. And to offer hope. We all need hope. I'm enjoying chatting with all the different guests. And inevitably, the different conversations are resonating with me, and reminding me strongly of different aspects of my own life. My own story if you like. And Christina definitely drew me in to share some of my own personal journey.

I feel inspired to make some more podcasts in the future, perhaps telling the story of Whose Shoes, how it all came about, which is a total blend of professional and personal, the whole me discovering, honing and following up what really matters to me and trying to make a difference. It's been a joy to watch Christina go from some inevitable natural nervousness about how it might be received, to I think a real pride. I think seeing people engage with the podcast and in turn, find resonance in their own stories. And everybody gets that little bit stronger and bolder in the process. We'll connect a little bit more. And this theme of connections and network of networks, and how we can use storytelling to support this, is the main theme of the podcast today. The Symphony of Us is not my name. You'll find out more in a minute. But it's a great name, isn't it?

Christina's podcast coincided with the launch of Lemonade radio, a wonderful new radio station, blending storytelling with music. Aha, we know a bit about that. In the Christmas special I did with Flo episode 15. We talked about how we've used music in lots of different ways in MatExp, maternity experience. And it gives me an excuse I think to share that clip again, that clip from MatExp The Musical on the mainstage of NHS Expo in Manchester because that always makes me smile. So that brings me back to the second thing that happened this week. Or perhaps it's the third if you count Christina's podcast and Lemonade radio as two things. I'm getting confused already. And now you're starting to understand why I'm not a massive fan of counting things that don't necessarily need to be counted.

Anyway. Here's a little conundrum for you. What have a lifelong Coventry City Football supporter, a community pollinator, a bereavement midwife, a primary school teacher, a spiritual minister, and a young woman who was born in Iran and came to Coventry aged two, got in common? More than you think. The Symphony of Us. So what am I talking about? So the second, or whatever thing it is we're up to, thing that happened this week was I dragged long suffering Mr. Whose Shoes off to Coventry Cathedral. Coventry was named as the City of Culture 2021. I think it must have been a bit of a mixed blessing, trying to put on events that pull people together and celebrate the city during a global pandemic. And certainly in normal times, I would have enjoyed getting much more involved.

But there we were, gathered in the cathedral for The Symphony of Us, a masterful musical extravaganza, by Paul O'Donnell, a proud 'Cov kid', as he calls himself. Paul describes it as a show that celebrate who we are as people. I can't possibly do justice to this in terms of explaining what happened, how it unfolded, and most importantly, what it felt like to drink it all in. Six 'ordinary' in inverted commas, people sharing snippets of their lives, and through spoken word and music, weaving them together in this beautiful tapestry, and actually in the same space as the famous tapestry by Graham Sutherland in Coventry Cathedral. Apparently. It was originally envisaged as six separate monologues. But it didn't work out that way, as connections were inevitably found between people's stories and they simply had to be joined together in a more creative way. Again, huge synergy with what I'm trying to do with the Wild Card Whose Shoes podcast. We found ourselves joining in with a Coventry City football song, 'Let's Sing Together'. As this coincided almost exactly with the launch of Lemonade radio, for me it was really emotional.

07:07

One more time. For those who are fumbling around for their programs, and didn't quite make it. So here in this wonderful cathedral of ours, in this great city of ours and for the team playing Southampton today in the FA Cup, One nil up at half time. ...

Gill Phillips 08:21

Music and stories evoke memories. I was immediately transported back to 1987, the first and only time that Coventry City have won the FA Cup. At the time I was working for Coventry City Council in Social Services, as it was called then. I was quite heavily pregnant with my second child. The atmosphere locally was electric. And just like the words of the song, the football build up and the eventual victory over Tottenham brought people together. Well, except for me and my brother because he's a lifelong Spurs supporter. But that's not really relevant here. Even people who weren't football fans, who weren't Coventry City fans, came together in the excitement of it all. I remember the open top bus with all the players coming back through Coventry, bringing the cup home. The shops were either closed or deserted. The streets were absolutely rammed with people. And there was excitement and celebration outside the council house. As the bus eventually worked its way through the cheering crowds to bring the players to the Civic reception. I've no idea how that would all work out today. There were people standing on the rooftops, people standing on high, narrow brick walls, people climbing up the lampposts and telegraph poles, everyone trying to get the best vantage spot.

So where was I? Well, I was incredibly lucky. No doubt because of my heavily pregnant state, the Director of Social Services invited me to come... I don't know if it was a party or not. You never know what's a party these days, but there was a band playing. And he invited me to come and watch from his executive office, which had a balcony looking out over the green where it was all happening. I had a perfect view, with my eldest son who was only two at the time. And of course, Mr. Whose Shoe ... who didn't at that time know anything about his Whose Shoes destiny. It was wonderful. No need to climb telegraph poles for us. And then the players made their way through the Council offices. I wasn't a Coventry City fan, but everyone was on that day. And it's amazing how events and celebrations like that pull people together in a very special way. So that was just one tiny bit from the Symphony of Us, and what was being relived, especially amongst the older people who were actually there at the time, each with their own unique set of memories.

As the symphony continued, we learned more about these 'ordinary' people, their personalities, their passions, what they had each contributed in life, what was important to them, and most interestingly, some of the things that they found that they had in common. Very sadly, two of the mothers had babies who had died, which emphasized the importance of the innovation around introducing bereavement midwives into maternity services. One of the men had grown up as a rainbow child, having had an older brother who died before he was born, and what influence that it had on his life. Everyone taking part had lived in Coventry for many years. But three were born in other countries. And so it went on. Roze, the youngest participant is now seeking to revive Coventr's twinning links. Coventry is twinned with 26 cities around the world, which 'in my day' at the Council were really strong, proud links. So how wonderful to see a young person picking this up and running with it. And to do this Roze was using... you guessed it, music. I'm hoping she will join me one day as a podcast guest to find out more. We're all connected. If you dig a little, if you show curiosity and get to know people.

Unusually very unusually, a classical orchestra was playing in the background, right the way through the performance, the 'orchestra of the Swan' they were called, I think it's called interpretive art. And then as a backdrop, the orchestra were playing against the etched floor-to-ceiling glass at the entrance of the cathedral, with the iconic ruins of the old cathedral in the background, and all that they symbolise in terms of war and peace, suffering and recovery. It was late afternoon and the spectacle became more and more beautiful as it started to go dark. And the participants ....protagonists ... performers, I don't really know what to call them, were picked out in beautiful purple shafts of light. For me a variation on the lemon light bulb, seeing these people all lit up in purple. Purple for me is the colour of change. And I found it highly significant and inspiring.

So what about the final thing number 3, or 4 or wherever we've got up to. At the end of the week, I was talking to my friend Claire Flower. Claire is a music therapist at Chelsea and Westminster hospital. Our maestro pianist who played #MatExp The musical on the main stage of NHS Expo in Manchester. She who pulled together our alternative version of Deck the halls with boughs of holly, in our Christmas special podcast edition with #MatExp partner in crime, fab Obs Flo, talking about decorating hospital wards at Christmas, Episode 15. If you want to check it out, even though it's not Christmas,. Always one to be creative and innovative. I was excited to hear a little bit about Claire's new job as a consultant, AHP, allied health professional, more of that anon. I think it's really interesting and exciting. And I'm hoping to speak to Claire at some point on a future podcast. But in particular, relevant to here,.

Claire was telling me about the 12th European music therapy conference that's happening in Edinburgh in June, where of course music will be celebrated. Claire knew this would interest me. In fact, she said it's got a Gill Phillips feel to it, which made me laugh. The conference title is 'music therapy in progress. Please disturb'. Its aim is, and I quote, "to create a playful yet rigorous space where we can shoogle and be shoogled " My mum who's Scottish by background used to use the word shoogling and I hadn't heard it for a while. I'll post a link to the conference in the programme notes as it looks wonderfully innovative and exciting. I just love the idea of formal events - this one is being held at the Queen Margaret University in Edinburgh - using more disruptive means to help people explore new ideas from real challenges. Positive movements such as Black Lives Matter and 'Me too' are mentioned, and the challenges posed by the COVID 19 pandemic, you can see influencing the spirit of the conference. It just seems to me throughout the history of mankind, creative arts have been used to tell stories, to make sense of our experiences, and to push and challenge and try and improve lives. So it's wonderful to see this tradition continued and in itself pushed a bit further.

So I think my lemon lightbulb moments are just jumping out at me for this episode. In one part of my life, I'm collecting more and more lived experience stories, and stories by just people who are passionate about improving healthcare, improving people's lives and well being. And it's obvious how much richness they have. In another part of my life, I hear apparent interest from the 'powers that be' in learning from ' lived experience'. So Eureka, I think well, why don't you listen to the podcast? Now, obviously, to be fair, many people are but not nearly enough. How about including some of them, or relevant clips from them, in clinical education? How about bypassing that bit where experienced clinicians say and often, with deep regret, oh, I never realized that you felt like that? Or that my words were received like that, when they hear real patient stories, people's stories?

Why do people have to keep repeating these painful stories, sending the same messages. So thank you to all the wild cards, the 'please disturb' people, the pirates and the shooglers. Here's to building a social movement of finding out what really matters to people in the most holistic sense, and truly listening. I absolutely love the title, 'the symphony of us'. I absolutely love the idea of celebrating ordinary people who are not so ordinary. I guess my Wild Card Podcast Series is a symphony of us. I have some wonderful new people lined up to share their stories, their challenges, their ideas. Let's listen. Let's disturb and shoogle. And let's all sing together.

I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favorite podcast platform. And please leave a review. I tweet us Whose Shoes thank you for being on this journey with me. And let's hope that together we can make a difference.

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22. 'Symphony of Us' - please disturb - Wild Card - Whose Shoes?

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Gill Phillips @WhoseShoes reflects on a week of gathering ideas and examples around the use of music in storytelling, listening to 'ordinary' people and spreading best practice.Celebrating 'ordinary' people who are not so ordinary.Lemon lightbulbs 🍋💡🍋 Creativity and music are powerful ways of rea...

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Go Cristina! Lady LXA!