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Chronic Fatigue Conditions Support Group

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Chronic Fatigue Conditions Support Group

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Developed by NHS England. A guide providing advice and support to help you in your career development.

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Created by NHS England, this framework enables you to create your own wellbeing plan.

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Information and resources to support patients with autism

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Information and resources to support patients with autism

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Autism in girls and women is increasingly recognised; subsequently midwives will be caring for more autistic pregnant women and people. In this article midwife Karen Henry, newly appointed lecturer at the University of Suffolk, shares her personal experience and the ways she is involved in improving unequal care.
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This year I was invited to be involved in a maternity transformation project with the Suffolk and North Essex Integrated care system. The aim of the project is to provide a forum for NHS leaders, local authorities, stakeholders, and communities to work together to improve health and care outcomes through addressing inequity and inequality within services. I was invited because I am an autistic midwife who has been working to improve access to maternity care for autistic women and birthing people. As part of the project, I was involved in filming a ten-minute cultural curiosity film called 'it's ok to ask' where I talk about what it feels like to be autistic and how maternity staff can support autistic women. The films form a set of 11 films covering a vast number of topics which can cause inequality in healthcare. The films can be accessed here: https://vimeo.com/showcase/9905864

Further information about the project is available here: https://www.sneeics.org.uk/resources/flipbooks/5-year-maternity-equity-plan/

As a student midwife back in 2016, I noticed a reluctance in some midwives to provide care for autistic women which perhaps stemmed from a lack of autism awareness, understanding and training at the time. Even today autism training consists of little more than an online learning package that takes 10-30 minutes to complete so no wonder some midwives feel out of their depth when supporting autistic women.

Autistic women report poor maternity experiences, they feel judged, isolated, stigmatised against and neglected. ¹ Hospital environments are reported to be sensory overloading due to the different noises, lights, smells and sounds which can cause autistic women to feel disabled and unable to process information. 2,3,4 Many autistic women do not tell their midwife they are autistic because they fear being judged and fear having their babies removed. ¹ This means they are not supported and sit with this fear throughout their pregnancy as well as navigating difficult maternity environments. For women who disclose their autistic status, they feel misunderstood and unsupported, possibly because they appear to manage appointments well due to an ability to mask ⁵ and act in particular ways to fit into society which is exhausting.

Continuity of carer makes a difference to how women perceive maternity care. They feel happier when midwives tailor care around their communication and sensory needs. However, many women are not offered reasonable adjustments due to poor staff knowledge ⁶ despite them being a legal requirement under The Equality Act 2010.

As an autistic midwife I have been working on initiatives to create accessible maternity care for autistic women. One such initiative was being supported through The Florence Nightingale Foundation, to create a series of support plans for pregnancy, birth, and the postnatal period.

Download the plans below:

The intention for the plans was to open up conversations between autistic women and maternity staff whereby women can find out what to expect at appointments and they can then share any adjustments to be made to make appointments and care accessible for them. Some ideas include extra time for antenatal appointments, appointments at quieter times of the day, to be accompanied or record conversations to enable more processing time, visits to the labour and postnatal wards so they are more familiar if they go into hospital at all plus having access to a single room may be beneficial. The film has lots more ideas for reasonable adjustments, plus I have written an article for the Practising Midwife journal with more ideas which will be published in 2023.

Another initiative I am part of is a collaboration with other autistic midwives, authors, educators, researchers, and health professionals who have formed a maternity autism

research group (MARG). Our aim is to improve the experiences of autistic people accessing maternity services by signposting information and resources through a website that holds autistic people at the heart of everything we do. The website is still early in its development, and it is hoped that MARG will become an accessible and comprehensive resource for the latest high quality, neurodiverse positive research, information, resources and training for maternity professionals and autistic people. The research group meets at least once a month to discuss advancing research in the field within social and biopsychosocial models of autism. The website can be accessed here: https://www.maternityautism researchgroup.co.uk

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It is important for research and information to be led by autistic people because for a long time, autism was studied from an outsider's perspective, often through the lens of autism being a deficit. ⁷ Early autism research was conducted by men such as Hans Asperger and Leo Kanner who studied young autistic boys and because of this, it is often assumed that autism mainly occurs in boys or that it is something which can be grown out of which is simply not true. ⁸

Autistic people have differences in how they experience the world yet, obtaining a diagnosis is difficult for women because the diagnostic criteria is based upon the behaviours of autistic boys and the research by Kanner and Asperger. Autistic girls appear to learn to imitate gestures and facial expressions from others, plus they learn social scripts and the importance of eye contact which enables interaction with others. This is known as masking or camouflaging which, all autistic people consciously or unconsciously do to be able to fit in with society despite it taking a lot of energy and potentially leading to burnout. ⁹

Autistic girls are more likely to be undiagnosed, diagnosed as adults when they have autistic children, or they are misdiagnosed with other conditions such as a learning disability, learning difficulties such as ADHD or medical conditions like Epilepsy or Ehlers Danlos Syndrome which then overshadow other conditions. Undiagnosed girls may be found under the care of social services with perceived behavioural problems, poor school attendance, ¹⁰ and may also be victims of abuse including sexual abuse due to their vulnerability. Undiagnosed girls may also be found in mental health services with poor mental health, stress, anxiety, and depression where autistic women are more likely to die by suicide than autistic males. ¹¹ It is important therefore, for midwives to be mindful to consider undiagnosed autism in women booking with a similar history. It is not for us to be diagnosing them but any of those experiences can impact experiences during the perinatal journey, so it is important to curiously delve beneath the surface and consider offering care adjustments and referral to specialist support.

The message I want to portray in this article is that whilst autism is deemed to be an invisible difference (or a disability to some), it does not have to remain hidden because this is associated with being out of sight and so out of mind. I feel that autistic women and maternity professionals can work together to co-create individualised, welcoming, and accessible care.
References
My passion for sharing this knowledge and improving maternity services for autistic women stems from me being an autistic woman, a midwife, and a mother of an autistic daughter who may access maternity care at some point. I feel that midwifery is not just a job, it's our identity which is modelled around kindness and wanting to provide excellent support and care to women. We have the potential to change future maternity care experiences for autistic women when we are armed with knowledge of the difficulties some autistic women may have when accessing maternity care and the practical things that may make a difference.

Pohl, A.L., Crockford, S.K., Blakemore, M. Alison, C. and Baron-Cohen, S. (2020) 'A comparative study of autistic and non-autistic women's experience of motherhood'. Molecular Autism11(3).

Burton, T. (2016) Exploring the experiences of pregnancy, birth and parenting of mothers with autism spectrum disorder. [Accessed on 2nd August 2020] https://pdfs.semanticscholar.org/5cca/93654dc6151211a9154c6fe1d36f989baca4.pdf

Grant, L. (2015) From Here to Maternity. London: Jessica Kingsley Publishers.

Hendrickx, S. (2015) Women and girls with autism spectrum disorder. London: Jessica Kingsley publishers.

Blakemore, M. (2017) Autism, Pregnancy and Motherhood: Special report says women overcome systemic abuse to become great mums. [Accessed on 15th August 2020] https://www.amaze.org.au/2017/09/autism-pregnancy-and-motherhood-special-report-tackles-systemic-abuse/

Hampton, S. (2020). Autistic mothers and the perinatal period: maternal experiences and infant development. D. The University of Cambridge.

Fletcher-Watson, S. and Happe, F. (2019) Autism: A new introduction to psychological therapy and current debate. Oxon: Routledge.

Prizant, B. (2019) Uniquely Human. London: Profile books.

Lai, MC., Lombardo, MV., Ruigrok, ANV., Chakrabarti, B., Auyeung, B., Szatmari. P., Baron-Cohen. S., MRC AIMS Consortium (2017) 'Quantifying and exploring camouflaging in men and women with autism' 21 (6), pp. 690-702. United Kingdom. Sage Publishing.

Moyse, R. (2021) Missing: the autistic girls absent from mainstream secondary schools.D. University of Reading [Online] [Accessed on 31st May 2021] http://centaur.reading.ac.uk/97405/13/24901800_MOYSE_Thesis_Ruth%20Moyse_Redacted.pdf

Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., and Baron-Cohen, S. (2014) 'Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study'. Lancet Psychiatry.1(2):142-7

December 2022

Karen Henry Midwife and lecturer, Suffolk, UK

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Addressing inequity and inequality within maternity services for autistic women - Maternity & Midwifery Forum

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Autism in girls and women is increasingly recognised; subsequently midwives will be caring for more autistic pregnant women and people. In this article midwife Karen Henry, newly appointed lecturer at the University of Suffolk, shares her personal experience and the ways she is involved in improving unequal care.

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#resolutions #veganuary #financialworkshops #reflections #shout #annualleave

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East of England Financial Wellbeing Webinars with HSBC

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East of England Financial Wellbeing Webinars with HSBC

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Links for webinars can be found on page 2 and 3 of the PDF file

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5 things to do to get you into a positive mindset to start your day of work

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How we treat each other at work has an enormous impact on how teams perform – with potentially fatal consequences if you work in healthcare. Founder Chris Turner reveals the shocking impact of rudeness in the workplace, arguing that civility saves lives.

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When rudeness in teams turns deadly | Chris Turner | TEDxExeter

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#summerselfcare #civility #kidseat4free #ThankfulThursday #Positivitree #practicerelatedfeedback

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Complete this Microsoft form and a member of the PMA team will contact you within 72 hours

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A free, confidential listening service run by a range of health care professionals

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Supporting Mental And Emotional Wellbeing | Nurse Lifeline

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Nurse Lifeline. Here to listen. Here to encourage. Here together. Our aim is to provide peer-support and raise awareness of mental and emotional health and wellbeing. Look out for useful links to resources, and positive and inspiring stories on our blog.

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The RCM is calling for employers to sign the new Caring for You charter, with fresh commitments on health, safety and wellbeing as well as rejuvenating its working relationship with RCM activists and branches. The charter commitments are strategies that the employer should be applying as part of the employment contract and in compliance with Health and Safety Legislation, Nursing and Midwifery Council (NMC) Standards for Midwifery and Education.

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Healthy and well rested midwives, maternity support workers and students are at the heart of providing safe, high-quality care for women and their families. Putting your heart into maternity care starts with Caring for You.

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A journal based app, which helps you manage your emotional wellbeing

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Proud to launch and gift our nursing version of ShinyMind to all NHS nurses, midwives, and health care support workers in England.

ShinyMind is an evidence-based, proven mental health and wellbeing app, co-created with the NHS

ShinyMind gives people the power to shine, improve their wellbeing, build confidence and transform their lives.

NEW Large-scale Mental Health Virtual Group Consultations

Discover our new and pioneering Shine Bright Mental Health Virtual Group Consultations that are reducing workload of GPs and widening access for 100+ patients at a time.

Dr Shankari Maha

GP at Lea Vale Medical Group and Strategic Clinical Lead for BLMK ICS

Robana Hussain-Mills

Head of Professional Standards and Leadership - Nottingham and Nottinghamshire CCGs/ICS

Dr Nicole Atkinson

Clinical Lead, Nottingham and Nottinghamshire ICS & Senior Responsible Officer for Notts ICS Primary Care and Primary Care Networks

Simon Browes

Chief Executive Officer, Nottinghamshire Alliance Training Hub

The mental health and wellbeing app built to help everyone shine

An empowering, proactive and interactive resource with over 150+ masterclass exercises and tools for people to explore, discover, learn and understand themselves better.

ShinyMind is a personal, confidential resource proven to reduce stress and anxiety, and helps people build confidence and personal resilience to ride the ups and downs of the rollercoaster that is life.

Reduce Stress and Anxiety

To help deal with the challenging world we live in, our interactive tools and masterclasses can help you learn more about and manage stress and anxiety better. Of nurses we support working in challenging environments, 94% say ShinyMind helps them feel better and our Wellbeing Prescriptions are helping patients worry less.

Shine Bright

We want to empower people to understand themselves better, to develop greater self-awareness in all areas of their life so they can think well, feel well, be well and shine their brightest.

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The only app co-created, developed and tested in partnership with staff from all levels in the NHS and given the most challenging real-life assessment.
Trusted by NHS clinicians and now prescribed by clinicians as a 'Wellbeing Prescription' in the NHS, we have also worked closely with NHS England and Improvement to build a nursing version of ShinyMind to support over 500,000 nurses, midwives and health care support workers across NHS England.

Recognised as "Outstanding Practice" by the Care Quality Commission, ShinyMind has been assessed by the Academic Health Science Networks and is showcased as a 'Proven Innovation' on the Innovation Agency Exchange, suitable for widescale adoption across the health ecosystem.

ShinyMind is also available to those working and supporting their local communities in councils, social services, care homes, housing, education, police and fire services.
As organisations that serve and deliver for our country alongside our NHS, we want to share ShinyMind with as many people working in the public sector as we can.

ShinyMind is a trusted, evidence-based mental health resource proven to improve employee wellbeing and mental health, performance and teamwork.

44% of work-related absence in the UK is due to stress, depression or anxiety, with 12.8 million working days as a result. ShinyMind has been tried and tested among people in the most demanding jobs within the NHS and is proven to reduce sickness absence caused by these mental health conditions.

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Masterclasses

We all love learning about ourselves and in a busy world it's good to know your time is being spent well. That's why we've provided the science behind every activity. With over 150+ interactive masterclasses, ShinyMind allows users to build a personalised resource to guide self-exploration and stimulate learning, self-awareness, reflection and growth.

And we're always working on new Masterclasses in collaboration with renowned authors, speakers, therapists and coaches to support our ShinyMinders.

The ShinyMind app recognises these challenges, and that different people have different needs. Users can filter what's important to them... ShinyMind is now showcased as a 'Proven Innovation' on Innovation Agency Exchange, the online resource managed by the Academic Health Science Networks (AHSNs) established by NHS England to spread innovation in health at pace and scale.

Jan Ross

CHIEF EXECUTIVE,

The Walton Centre NHS Foundation Trust

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ShinyMind - Mental Health & Wellbeing App co-created with the NHS

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A mental health and wellbeing app co-created with the NHS, giving people the power to build confidence and transform their lives.

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#reversementoring #retentiondropin #shinymindapp #ThankfulThursday #itsokayto

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4 things to consider at the end of the day to help you transition to rest

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Civility Saves Lives website

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Civil work environments matter because they reduce errors, reduce stress and foster excellence.

Almost all excellence in healthcare is dependent on teams, and teams work best when all members feel safe and have a voice.
Civility between team members creates that sense of safety and is a key ingredient of great teams.
Incivility robs teams of their potential.

Live feed tool is having some difficulties, so this will be back live as soon as we can.

Incivility has been shown to reduce team functioning, clinical decision making and patient outcomes.

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Civility in the workplace, including the clinical setting, is important. Civility improves patient outcomes. Civility Saves Lives

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#IDM2023 #ACTtraining #ThankfulThursday #MHFA #PositiveWorkingGroup #mindfulness #SCOREsurvey

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#introductions #wellbeingresources

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Free online training on a range of topics such as; managing workplace stress, burnout, improving work-life separation, building resilience and understanding trauma

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PMAC specialises in providing bespoke training solutions to individuals and organisations across the UK. We pride ourselves on our ability to deliver engaging, yet professional training to small bespoke groups, up to larger audiences.Established in 2018, PMAC was launched in response to a large demand for health related training courses that offer value with no compromise on course quality.Our courses are developed in line with clients requirements, using life and professional experiences.

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A list of support available for our NHS people created by NHS England

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We know that our NHS people are often faced with significant stresses. The NHS can only achieve the extraordinary things for patients that it does if the safety, health and wellbeing of our people is recognised as a key priority.

If you need someone to talk to, we have introduced a confidential text support service, you can access support by texting FRONTLINE to 85258 for support 24/7. This service is available to all our NHS colleagues who have had a tough day, who are feeling worried or overwhelmed, or who have a lot on their mind and need to talk it through.

It's important to ensure our health and social care colleagues are looking after themselves and get timely support should they need it, this in turn can help to support better patient care. The free and confidential self-check tool can provide you with further information on the range of support offers that are available and help you to identify what option is the right one for you to access. The self-check tool is now available.

We also have a range of additional support offers in place for our NHS colleagues which suit a range of different health and wellbeing needs. Scroll through the options below to find the one that works best for you.

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NHS England » Support available for our NHS people

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We know that our NHS people are often faced with significant stresses. The NHS can only achieve the extraordinary things for patients that it does if the safety, health and wellbeing of our people is recognised as a key priority.

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Information and resources to help Professional Midwifery Advocates (PMAs) and Professional Nurse Advocates (PNAs) support colleagues affected by grief and loss.