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Please use this form if you wish to name a practitioner or setting

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All feedback on our feedback wall is anonymous for the poster but we also ask that no school or practitioner is named especially in negative feedback, however this also means there is no way that our feedback can be used to improve performance of a particular individual or setting. Please continue to add your feedback to the wall https://padlet.com/warwickshireparentcarervoice/feedback but if you want to provide us with more specific feedback you can use this form. Please note that all feedback must be from the last 3 months.

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Thank you for coming to our Feedback wall - please only give feedback for things that have happened within the last three months.

You can see the topics we are collecting data on by scrolling across the screen - don't worry if what you want to tell us about isn't listed just put it in the 'Other' column at the end.

To add a post click the + icon and it will open up a 'post-it' where you can give us your feedback.

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The 'post-it' will look something like this (on a laptop)

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The 'post-it' will look something like this (on a laptop)

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The 'post-it' will look something like this (on a phone)

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The 'post-it' will look something like this (on a phone)

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In the box that says Subject tell us what specifically you want to give us feedback on e.g. Timescales, Good practice, a particular service

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Use this space to give us details of your feedback - please don't name individual practitioners but please do give us some specific information about what is happening so that we know what changes are needed or what needs to be celebrated.

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Click the 'Rating' and select whether your feedback is positive :) neutral :| or negative :(

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If you want to add a file / photo / link you can do that by clicking these icons (on a computer they are in the middle of the box on a phone they are at the bottom of the screen

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We reserve the right to edit or delete any posts that contain offensive language or identifying details.

If we do this we will add [Edited for x reason] to be transparent.

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If you are concerned that sharing your experience will identify you or your child please feel free to email hello@warwickshireparentcarervoice.org

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Please use this form if you wish to name a practitioner or setting

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All feedback on our feedback wall is anonymous for the poster but we also ask that no school or practitioner is named especially in negative feedback, however this also means there is no way that our feedback can be used to improve performance of a particular individual or setting. Please continue to add your feedback to the wall https://padlet.com/warwickshireparentcarervoice/feedback but if you want to provide us with more specific feedback you can use this form. Please note that all feedback must be from the last 3 months.

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Please use this form if you wish to name a practitioner or setting

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All feedback on our feedback wall is anonymous for the poster but we also ask that no school or practitioner is named especially in negative feedback, however this also means there is no way that our feedback can be used to improve performance of a particular individual or setting. Please continue to add your feedback to the wall https://padlet.com/warwickshireparentcarervoice/feedback but if you want to provide us with more specific feedback you can use this form. Please note that all feedback must be from the last 3 months.

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We are always looking for more people to get involved with our work - if you are interested please join us as a member https://in.lamplight.online/in/zAK37/9413bd7c4a82daa14d05ddd4112fb7781ce22e0b8f497589a29fe2576ce5b143

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I can confirm that I have a child/children aged 0-25 with additional needs

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Please use this form if you wish to name a practitioner or setting

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All feedback on our feedback wall is anonymous for the poster but we also ask that no school or practitioner is named especially in negative feedback, however this also means there is no way that our feedback can be used to improve performance of a particular individual or setting. Please continue to add your feedback to the wall https://padlet.com/warwickshireparentcarervoice/feedback but if you want to provide us with more specific feedback you can use this form. Please note that all feedback must be from the last 3 months.

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My child has an EHCP and significant SEND needs (Autism, PDA profile and ADHD). Despite professionals identifying interventions that enabled him to engage in education, key provision was removed and no effective replacement was put in place.

Since the removal of specialist alternative provision that provided regulation, emotional safety and engagement, my child’s attendance has collapsed and he has been unable to access education for many months. During this time, I have repeatedly asked the Local Authority to consider how his needs can be met, but I have felt passed between departments rather than supported to find solutions.

The most frustrating aspect has been that everyone agrees my child has significant needs, yet responsibility for providing suitable education appears to be disputed between services. Parents should not have to become legal experts, submit complaints, tribunal appeals and pre-action letters simply to secure education for a disabled child.

The EHCP process itself has felt adversarial rather than collaborative. Provision that was clearly helping my child was treated as temporary despite being integral to his ability to engage with education. Decisions affecting his education were made without meaningful consultation and the impact on his wellbeing has been significant.

I would like Warwickshire County Council to:

Act sooner when a placement is clearly breaking down.

Work collaboratively with families and professionals.

Recognise that attendance difficulties can be a consequence of unmet need rather than parental choice.

Ensure EHCP provision is specific, enforceable and actually delivered.

Provide timely alternative education when children cannot attend school.

Listen to children and families who are telling them what is working before removing successful support.

My child wants to learn. The system has too often focused on attendance figures and processes instead of understanding why he is unable to attend and what support enables him to succeed.

As a parent, I feel exhausted by having to continually fight for provision that should already be available through my child’s EHCP and legal entitlement to education.

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SENDIASS website is not available - looks like someone has forgotten to renew the domain name... how are parents supposed to access support?

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Good that the EP service has asked my 18 year old son to consent to us as his parents receiving his most recent EP report

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Really pleased that my daughter's secondary school has made the reasonable adjustments she needs (quiet spaces for lunch, use of 'loops', sitting on the edge of assemblies etc) without any fuss or diagnosis

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[Edited to remove school name] school Nuneaton

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[Edited to remove school name] school Nuneaton

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I've just found out from my niece that they are learning about neurodivergence in her school. [Edited to remove school name] school Nuneaton. Some of her terminology was a little on the worrying side. Saying children with neurodiversity are children in need, and they wonder around not really knowing what they are doing. She is 8 nearly 9, whilst it's refreshing to hear the conversations are happening, it is worrying that some of the terminology is not how people with experience would describe neurodiversity. I think more training is needed to ensure lessons are fully equipped and describing the community in the right context. This happened in her PHSE lesson

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Please can you survey special schools to find out if they have/are planning to get air conditioning. The heatwaves are only going to get worse and our child's school is unbearably hot our choice during this weather is go to school and risk seizures or don't go to school and miss education. We're not the only ones in this position. Parents are discussing fundraising for air con but the school has over a million on reserves. Surely this should be a priority on health and safety grounds!

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Its changed in the past year and now all on the app. Gone the card and written times... its now a virtual queue but scanning a QR code at each ride. The staff helped me son amd described it well. Was a successful trip all round.

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Confusing messages sent the last week of term saying that transport is cancelled for the rest of the week and then another one to say ignore the first one! Do they know how much stress and panic this puts us through! Make sure you have the facts before sending an email!

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We didn't qualify for HAF this summer as they had changed the criteria and we don't get free school meals. Can't find anything for my son to go to without a HAF code as everywhere is either booked up or don't take bookings without a HAF code. Also many usual HAF providers are no longer doing SEND HAF sessions anyway which is disappointing to hear.

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I am a parent carer struggling to get the social services team to actually help. I'm completely burnt out and we have been listed as a family in crisis for 8 weeks with no one listening to my sons needs that I'm no longer able to meet

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Our overnight respite at Gramer and Holly House had been cancelled due to the site being used as an emergency place of safety again. We were then told it could go ahead as Holly had reopened but it was cut to one night to ration provision as only one building was open over the summer due to staff shortages over the summer. None of this was communicated properly and it will have a huge detrimental effect.

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Our social worker didn't turn up for our child in need meeting.

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We were told that the reason we couldn't have PA hours was because we had overnight respite funded by social care. Not only was this inaccurate and you can have both PA hours and overnight respite, but our overnight respite is fully NHS funded. This means we are receiving no funding at all from social care but still being penalised as if we are.

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We don’t qualify for HAF. Our son attends mainstream school with a 1-2-1.

Holiday clubs can’t take him without a 1-2-1 and there are none able to provide someone.

We have managed to get his school 1-2-1 to help for a few days at a local holiday club with his twin brother, but we are paying for this on top of the holiday club cost.

Children with disabilities are left massively isolated throughout school holiday meaning getting them back to a school routine is more stressful than it needs to be.

Essentially children are discriminated against because 1-2-1 support isn’t available. If you are lucky enough to have a school 1-2-1 who is free to help it’s great, but there should be more support.

I had an idea that teaming up with local teacher training colleges might be useful, the trainees would get valuable experience working with SEND children and families, they would already have DBS checked.

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Councillor [post edited to remove councillors name] 

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Councillor [post edited to remove councillors name] 

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My councillor has aimed abuse at the childrens bereavement Centre at Birmingham because it has a rainbow on the sign and then when called out on the local forum he calls bereaved parents lunatics!

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EOTAS planco really hard to get hold of and no clarity about who we should contact while she takes 4 weeks annual leave.

Barely any provision for my child and noone seems concerned. Funding for the EOTAS package had been really slow to be released meaning we had to either cancel desperately needed psychiatrist session that has previously been funded as part of his EHCP. SENDAR asked if we could cover it while we wait die it to be set up... we have done so but many families would not have over £300 available to do so.

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We asked for an assessment from family help, went through the whole assessment just to be refused at panel for any respite which was so disheartening. My son will not leave the house without a trusted adult which means that 1 of us parents is always trapped at home, with another child at home this is reallt hard and has meant I have had to give up working.

He is EOTAS but has next to no provision and so does not even go out for school.

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Email that transport for next year cancelled

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Email that transport for next year cancelled

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Lovely start to the holidays i had already had an email to say transport confirmed for next year and no changes. Then first day of summer holidays an email to say its cancelled and whe i tried calling and couldn't get through.

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Nice holiday club for people in Nuneaton

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Why don't plan coordinators don't have voice mail?

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In the hope of making my autistic child’s upcoming specialist appt at the hospital in Coventry easier I have attempted to advocate for reasonable adjustments.

I am concerned about how lacking their awareness of what this is is!

Imagine if you were going to an appt in a new hospital and you looked online for a map and it wasn’t there. And it said on the letter - if you need a map just let us know in your appointment. That would be pretty ridiculous right!?

The UHCW letters say let us know if you need reasonable adjustments by bringing your hospital passport with you!

Well for one we don’t have one. It’s our first appt there. And secondly that would be a hit like shutting the barn door after the horse has bolted.

My little like many neurodivergent kids and adults needs to know where they are going. What it will look like and what will happen. They need this info in a way that is easy to understand. We also need this info so we can prep for what things might be overwhelming, frightening, etc.

We don’t just need to know what will happen in the appt. We need to know what the waiting area is like. What the main entrance and lifts are like.

It’s a long drive so we need to know if there is anywhere for us to get our wiggles out after a long drive.

We need to know if there are any Changing Place toilets and where they are. (Pretty sure there are none at UHC so will be changing nappies on dirty disabled toilet floors again. In a relatively new build hospital??!!??)

When I ring and explain this it seems like I am asking for a golden carriage to take us there. But I’m not.

All of this info is super easy to put together generically for the hospital and pop on a page that houses the info that they assume everyone needs - map of the hospital, parking info etc.

Even the map that is for everyone is super hard to understand. But where is the disabled parking in relation to the entrances? Where are the play areas (if any??)

But anyway I have probably spend a full working day on the phone to different people and googling what there is etc.

It shouldn’t be that hard.

It shouldn’t feel like I’m being inconvenient.

As it is if I don’t prep my child in this way it will be a wasted drive for me. A wasted appointment slot because they won’t be able to do the things they need to.

A massive waste of everyone’s time and money. So by advocating I’m trying to save that waste.

It’s not that hard.

Some photos of key parts of the hospital.

A video walk through of getting from the car park into the front entrance and to the visitors desk. A video walk through of the outside areas and eateries.

Please please ask them why on earth this isn’t there as absolute bare minimum.

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I have recently moved to Rugby I have no idea where to turn. Been refused OT because she has autism and adhd. She also has severe hypermobility suspect EDS. But need someone to assess the house try get window and door alarms/locks is this something I’m going to have to fund myself. She has no danger perception and just had a neighbour knock my door because my child was hanging out the window with blanket dangling out of it she’s nearly 11.

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Struggling to access an updated OT assessment for my son who we were told many years ago had definite motor coordination issues. He's nearly 9 and outgrowing his pushchair so looking at what we should get/do to support him next. Really struggling to know where to go as school aren't being supportive and OT never replied

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We had a great time at different activities at Ladybug Lodge this week. The facilities they have are amazing and it was really well organised. Disappointed to find out that they were accepting Warwickshire HAF codes but our social worker gave us the wrong information about how to book so we ended up paying out of pocket when we didn't need too.

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Good to see this new service but the online referral form has a lot of compulsory fields for demographic data - are they all actually necessary, my YP didn't really want to fill them all in? Also no option for heterosexual on the sexuality question

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We used them for my son's blood tests. They come out to home and are very good at making it really easy. There is a small charge but reasonable and test results back very quickly. Much less stressful than going to hospital.

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Nothing really out there in Rugby apart from computer explorers at Houlton that we can find so difficult to entertain him now

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Take A Break cancelled this week due to lack of staff 😢

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Great acccessibility guide from Draycote Water

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Great acccessibility guide from Draycote Water

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Great guide for all sorts of needs - why can't everywhere have something like this?

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The Sensory Room at Hatters Space Family Hub is great and you can book it for a private session for your family

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Saw this advertised in the library but apparently it’s only for those who care for adults - parent carers forgotten again

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The SYC have been amazing with both my sons, I honestly can't thank them enough. Both boys attend the Quiet Session on a Tuesday evening, spending the time playing Dungeons and Dragons. It's a safe space for them to socialise to their own abilities.

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Lack of inclusive summer child care and activities in Warwickshire 

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Lack of inclusive summer child care and activities in Warwickshire 

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Each year I research and fail to find summer kids clubs and fun activities which provide support for kids with additional needs and have SEND knowledge and understanding. We don’t qualify for HAF and my son struggles at the mainstream summer clubs. He would love to get involved in fun clubs and activities and make friendships but there just isn’t the provision near us. The activities via ileap start mostly at 12 or 14 plus which will be great in a few years but there is a real need for more extra curricular provision to support our young people through the long summer holidays.