Category Archives: Blog

CEPCF CoChair Mandy Dickson’s Blog – October 2020

I hope you are all well and keeping safe in these difficult times.

It’s been a busy few months for our parent representatives and I wanted to take this opportunity thank our team of volunteers or stepping up and working so hard while juggling all their caring responsibilities and everything else life throws at us! Kate and I are also delighted to welcome a new volunteer – thanks Jen, it’s great to have you on the team

I’d also like to update you on some of the work we have been doing:

Raising members’ issues with the SEND Partnership
The team met with Jacky Forster (Director of Education & Skills at Cheshire East Council, and Chair of the SEND Partnership) back in September, and then again on the 15th of October.

We shared all of our members’ feedback with Jacky who has taken your points for further discussions with the relevant teams working on EHCPs, Autism, Complaints and EHE and representatives working with those teams and workstreams are following these up so we can keep you updated.

Myself, Kate and Diane met with the transport team, we took all of your questions and issues to
them and they listened. We agreed to put “SEND Transport FAQ” together for them to answer and publish on Live well – we’ll share it with you as soon as it’s out.

Message from Jacky Forster
We continue to work very closely with the parent carer forum and really value all the feedback and contributions parents make to our development plans. This blog is a wonderful way to keep in touch.  I hope you are all keeping safe and that with the higher Covid restrictions you are still able to get the support needed.  We continue to work with schools to look at how they meet needs when pupils are required to isolate. We are all committed to supporting children and young people to catch up and keep on track with their education.

SEND team virtual coffee mornings

The SEND team locality managers have asked us to set up some online coffee mornings so that parent carers can meet the teams working with their children / young people, hear an update on how the teams are working and ask any questions they may have.

Laura Rogerson (Head of Service SEND) asked us to share the following message:

To all parents/carers the SEND locality managers would love you to join them for a virtual session, if you have any questions that you want to put to the team to please send to by email to in advance.  So grab a coffee and join us on:

North session:  Matthew Lowe 4th November 2020 10am-12pm click here to register for the event

Central session: Chris Broadhurst 16th November 2020 10.30am – 12.30 pm click here to register for the event

South session: Rebecca Boothroyd 17th November 2020 10.30am-12.30pm click here to register for the event

Generally the locality team looking after your child / young person’s support will depend on the area where their setting is located rather than where you live, but if you’re not sure you can email to double check

Cheshire East Parent Carer Forum AGM

We will be holding our AGM online on the 12th of November 12pm -2pm. We will be sending out invites any moment now, and would love to see as many of you there as can make it. Our speaker is Oliver Jade who is a young man with additional needs who has been through the system and has an inspiring story to tell he will be speaking about his amazing journey.

Chair’s blog: Happy New Year!

The parent carer forum would like to wish you a merry Christmas and a Happy New year.

We would like to share with you some of the things we have achieved in 2017 also some of our plans for 2018.

2017 has been a very busy year for the reps we have been working on and helping roll out the new toolkit which schools should be using now making a uniform approach in all schools when it comes to SEN. This makes it easier for schools, parents and the LA to work together.

Myself and Chris have been working with the new short breaks team, sharing your concerns and working with them on the transfer of managing EHIPS from CCIL back into the council. There is now a team of people who will be working with families on EHIPs instead of just one person. The team are currently looking for a pre-paid card provider for EHIPs so families are not paying out of their own pocket. We also wanted some feedback on your preference on how they do the EHIPs forms: would you want them sending out before your visit from the short breaks team or would you prefer them to bring it on the day of your visit?

Cat Linde – team manager for the short breaks team – says:

‘Another productive meeting with Mandy and Chris today, things are feeling much more positive! 

Working closely with Nick from CCIL has been great and will really help towards a smooth transition for EHIPs. 

Parents now have the CWD Short Break Team contact details [you can call them on 01625 378083] and some have been in touch, it’s fab to start making links. 

My team and I are looking forward to meeting lots more parents at our upcoming coffee morning’ 

I am currently on the team looking at the new free school planned for 2020 we are currently going to tender. I will keep you informed of the progress. I think it is great that the council want a parent view on this it also gives us the opportunity to have our say on our children’s future schooling.

I would like to thank everyone who has been involved with the parent carer forum in 2017 and invite you all to get involved in 2018.

Mandy Dickson, 31 December 2017

Autism Consultation – we need your voices – 12th Dec 2017 Crewe am

Autism Consultation – we need your voices

We need as many parents/carers to come to the following consultation events to let the authorities know your viewpoint regarding support/provision for young people with Autism in Cheshire. This is being hosted by Ian Donegani – Head of Service

As part of a consultation exercise, the council are running two consultation sessions to get your viewpoint regarding support/provision for young people with Autism in Cheshire (up to 25)

Session 1: Tuesday 12th December 11am-2pm at Autism Inclusive (Crewe)
Session 2: Tuesday 12th December 5pm-8pm at SPACE4Autism (Macclesfield)

As part of a consultation exercise, we are running two consultation sessions to get your viewpoint regarding support/provision for young people with Autism in Cheshire. One at Autism Inclusive and one at Space4Autism

Hosted by:
Ian Donegani – Head of Service (SEND & Inclusion
Cheryl Knupfer – Autism Behaviour Consultant

We need as many parents/carers and also youths to come along and have your say to let the team know of your experiences of Autism in Cheshire. I know we have been there before but again this is your chance to have a voice

Children with Disabilities Short Breaks Team

Cheshire East Council and the Cheshire East Parents Carers Forum wanted to write to you to provide information on some of the developments that have recently taken place within the local authority and to answer some of the questions that you may have concerning this.  With that in mind we would like to take the opportunity to apologise for any for any concern that uncertainty about the developments has caused parents and carers and hope this information will help.

We would like to introduce a new team within Cheshire East, the ‘Children with Disabilities Short Breaks Team’.  The team has been developed to improve services for children and young people with disabilities and their families who access short breaks and to ensure that parents and carers have a direct point of contact within the local authority for enquiries and support.

The Short Breaks Team will manage all direct payment packages and work closely with short break providers (commissioned services) who offer clubs, groups and activities as part of our ‘short break local offer’ across Cheshire East.

The team consists of a Team Manager, Cat Linde and four Family Support Workers, Rachel Barker, Lisa Eyres, Rafiah Zubair and Eric Hasleden.  We are going to provide more information about the individual experiences of the team members within the next Parent Carers Forum Newsletter, however we are really pleased that all of the members of the team have come from a background where they have worked with or have personal experiences of children with disabilities.

The team is based within Macclesfield Town Hall; however they will be working across the whole of Cheshire East.  We are really excited to be working with you all on the development of the new team.

Along with Short Break Direct Payments, from the 1st April the Short Breaks Team will also manage Early Help Individual Payments (EHIPS). Over the past 18 months, with the support of the Parent Carers Forum, Cheshire East consulted around whether parent carers wanted to continue with EHIPs, this consultation received a resounding yes and a decision was made to continue to deliver this as part of our ‘short breaks local offer’.

Between now and the 1st April the Cheshire Centre for Independent Living (CCIL) will continue to manage the EHIP’s process.  We are very happy to confirm that we have already provided CCIL with the total fund to ensure that there are no further delays to you receiving your payments and we really want to apologise to you if you have had payment problems over the past month.

How EHIPs were to be delivered was not part of the short breaks consultation and the decision to bring EHIPs into the remit of the Short Breaks Team was a local authority based decision as the contract with the Cheshire Centre for Independent Living was coming to an end.  We hope to reassure you that we believe that the new team will improve the service that you receive and I can also confirm that there are absolutely no savings attached to this change.  We are confident that the development of the new team demonstrates the ongoing commitment in Cheshire East to improve services for disabled children and their families.

It is our understanding that a letter was sent by CCIL asking for your consent to share your details with the local authority.  This was actioned as without parents giving CCIL consent to share their details with the local authority, it would mean that Cheshire East would not know who to make payments to once EHIP’s moves into the new Short Breaks Team.  We understand that the letter sent by CCIL was interpreted by some parents as having a threatening tone, in that if parents and carers did not give consent then their payments would stop.  Clearly this should not have been written as a threat, as all we want to achieve is a transfer of EHIP’s between CCIL and Cheshire East with as little impact on children, young people and their families as possible and we would like to apologise for tone of the letter.  We will make sure that we feed back to CCIL that regrettably some families have been distressed by the wording of the letter.

We can understand that some parents and carers feel that they have experienced changes to what they could spend their EHIP’s on.  We would like to explain that we regret that there has been confusion as some previous EHIP’s were paid out in error using the adult criteria, which is not a specific short break criterion.  We are confident that by bringing the EHIP’s management into the Short Breaks Team we will avoid future confusion.

The national statutory guidance requires local authorities to provide short breaks that give parent carers a break from their caring responsibilities.  If for example a parent uses their EHIP to pay for a holiday in which they accompany their child, this does not constitute a short break, as the parent is there caring for the child.  If however the parent uses the EHIP to pay for a carer to accompany them on the holiday, who will take responsibility in whole or in part for caring for the child or young person, then this does constitute a short break.  The same might apply to buying a Merlin card for a carer to take the child out so a parent can have a break. The Short Breaks Team will be able to give families advice on how best they can use their EHIP’s

In addition some parent carers have asked us to clarify whether or not they can stay at a short break event with their child.  This issue is about choice for parents and carers.  You should not be made to stay by our commissioned providers as by doing so you are not being given a break from you caring responsibilities.  If however you are given the choice to stay, for example to attend a parent coffee morning being run by the same provider and you decide for yourself that you would like to stay, that is fine.  Ultimately you must feel as parent carers that you have that ability to make a decision for yourself about whether you would like to stay and not. And not have the choice taken out of your hands

The statutory guidance that all local authorities have to work too is entitled ‘short breaks for carers of disabled children’ which we have included as a link below.  EHIPs constitutes part of Cheshire East’s short break ‘local offer’, this is the short breaks that are available to children, young people and their families without having to undergo an assessment of need, either through the National Assessment Framework for Children in Need and their Families or the Common Assessment Framework.

The Children Act 1989 (“the 1989 Act”) states that local authorities have a duty to provide, as part of the range of services they provide for families, breaks from caring for carers of disabled children to support them to continue to care for their children at home and to allow them to do so more effectively.  Recent case law and new legislation has also had an effect on the services that local authorities offer and how they deliver them.

Local authorities must do the following:

  • Ensure that parents are engaged in the design of local short breaks services;
  • not apply any eligibility criteria mechanistically without consideration of a particular family’s needs
  • give families the choice to access short breaks services using a direct payment
  • “state in their short breaks service statement the range of short breaks services available, the criteria by which eligibility for services will be assessed, and how the range of services is designed to meet the needs of families with disabled children in their area; “
  • Good practice is that a ”local offer” is considered in order to provide families with access to some short breaks services without any assessment.

If you are already receiving EHIPS, over the coming weeks and months you will be contacted by a member of the Short Breaks Team who will help identify all those things that EHIPs can be used for.  There will always be things that need to be agreed on a case by case basis, as our aim is to ensure that whatever is being purchased does provide the parent carer with a break from their caring responsibility.

Please email us at  , if you would like to be contacted sooner for advice on what you can spend your EHIPS on or are interested in applying.

The Short Breaks Team will also be able to help with finding alternative funding streams and charities, so if there is something we don’t agree you can spend your EHIPs on, we can help identify alternative ways to fund and access the support that you may require

All of the new short break providers (groups, clubs and activities) are part of Cheshire East’s short break local offer along with other organisations offering short break support.  The new Short Breaks Team is working on the development of a newsletter and written details of all the short breaks that can be accessed across the local area.  Attached to this letter is a timetable of all the short break providers that we have directly commissioned (Paid) to provide you and your children with support

We have also attached a link to our short break web pages for reference.   However, we fully understand that some families may require additional support in identifying the most appropriate short break for them and their child.  This is also a task that the new short breaks team will be very happy to help with.

Having looked at the questions that we developed through the quick quiz we can see that no explanation was given around the previous short break contracts coming to an end.  In hindsight it would have been beneficial for us to have done this as it might have reassured any parent carers who were concerned about the motivation for re-tendering the short breaks local offer contracts.

Cheshire East will therefore be reviewing how it carried out its short break re-commissioning so that it can learn lessons about communicating and working with parent and carers in the future.  There was a representative from the Parent Carers Forum involved in the tender evaluation and contract award process but Cheshire East want to look at whether this process can be improved.

We have already established regular meetings between the Joint Chairs of the Parent Carers Forum, the Service Manager of the Children with Disabilities Service and the Team Manager for the Short Breaks Team, to ensure that the short breaks service continues to be developed in co-production with parent carers.

To ensure that moving the management of EHIPS into the Short Breaks Team goes as smoothly as possible, we would like to set up a working group involving the Parent Carer Forum, Cheshire East and CCIL.

The Short Breaks Team is also going to liaise with the Parent Carer Forum to arrange a coffee morning where you will be able to meet Cat, Rachel, Lisa, Rafiah and Eric.  We would love to see as many people involved as possible so that we can all be involved in the development of this exciting new service.

CEIAS workshop – update from our Chair


On Friday the 10th November 2017, the PCF held a joint coffee morning CEIAS – Cheshire East Information Advice Support.

This event was to give parents a chance to work with CEIAS to help think, how they could use their resources most effectively to support and empower parents. As there have been changes in staffing at CEIAS we looked at issues such as whether all the things CEIAS do currently make a difference or not, are there better ways of doing things or things CEIAS don’t do now but should consider, and how parents can help and influence CEIAS’ development as a service.

The event was very helpful and parents said they found the openness about staffing changes and being asked for opinions on how the service should work really positive. Lots of actions and suggestions have been taken away and we will be feeding back progress to parent carers.

If you have any questions or have any information about the service please email

Chairs’ blog – Working with the LA on Independent Travel Training

Mandy Dickson:
The parent forum have been very busy over the last few months working with Cheshire east trying to improve on departments within SEN.
I wanted to share some information with you about a new working group that I am part of looking at Independent travel training for our young people,
Our first meeting was last week and they will continue until it is felt ready to roll out.
I believe this to be a project that firstly is close to many parents’ hearts; I understand a parent’s apprehension around our children travelling independently and I will be mindful of representing these concerns in the works.
I also feel that this is an important part of introducing our children to becoming independent. Having the ability to use public transport both confidently and safely will help ready our children for such things as college, job interviews and socialising with friends.
I believe this service will give confidence to both parents and our children. I would love to hear your feedback, thoughts, ideas and concerns on this workshop. and I will keep you updated.
If you think you’d like to find out more about being a parent representative & getting involved in work like this we’d love to hear from you! Call 07794431768 or email

Parents recommend: holidays for disabled children

Following a recent question asked on Facebook, we are trying to keep track of parents’ website recommendations for finding and funding holidays with children with disabilities

If you find any new recommendations please email so we can add to the list (and if you find anything out of date on here, please shout so we can take it off)

Parent Representatives: Interview Panel

On Monday, I attended an interview with the Youth Support Service taking place at the Crewe Hub for a Participation Support Worker. Being part of the interviews, I felt that the Parent Carer Forum really does have input and that together we can reach milestones and can really make a difference to our wonderful children’s lives. I think that the SEN team really respect our opinion and together we can give them our expertise; after all, as parents of SEN children we are the experts. I honestly believe that as a forum, we can really make a change.

2017 AGM – Steering Group Review of the Year

At our AGM on Tuesday, Claire Johnson (a member of the PCF steering group, and one of your parent reps) presented a very brief summary of our forum’s very busy year!

My name is Claire. I am a member of the Steering Group, and this year I have also become a ‘Parent Rep’, working with Cheshire East to represent our members’ views and interests in finding better ways to work with our children & young people.

We are all parent carers and we are all volunteers. We know first hand how hard it can be to have a child or young person with additional needs, and the additional pressures that we face in making sure they get the health, educational and social service support they need.

In a moment we will hear from Sherann Hillman, who is Co-Chair of the National Network of Parent Carer Forums. Sherann is going to talk to us about ‘co-production’ and how we can work together with the Local Authority, CCGs and service providers to make things better.

After Sherann we’ll hear from Ian Donegani, who is Head of SEND at Cheshire East Council.

A lot of you came along to the consultation sessions we held in September and October last year, where Ian met you all and asked three questions: “What’s working well? What’s not working well? What does good look like?”

Ian will be talking about the work that has taken place since then, trying to learn from our experiences address the issues raised.

I am one of more than twelve parent representatives who has been involved in this work with Cheshire East, going to regular meetings to contribute and challenge. This has really got going since this year, and we’re still learning as we go, but it’s been a great opportunity. We have all agreed that it is great to be able to share our members’ views, and find ways to take some of the negative experiences and frustrations we have had and channel them into something more positive and constructive.

Through the forum we are able to offer support to other parent carers – sometimes just sharing advice on over the phone and at coffee mornings or on our Facebook group, but also by arranging training sessions.

We also hold Open Forums to look at a specific topic in greater detail. In November we held an Open Forum on Transition / Preparing for adulthood, where we brought together speakers and providers to meet parents and young people and share information.

This year we have held training sessions for Parent Representatives, legal training from IPSEA on SEND law and also some Confidence training sessions looking at strategies for discussing things that can be quite emotional while in meetings with professionals.

Our final speaker today will be Chris Wee, who – as well as being a member of our steering group and a parent representative, is also a Consultant Child Psychiatrist.  We know that Sensory Processing is an area where it is very hard to access support in Cheshire East, so Chris has kindly agreed to run a short workshop to share some of her expertise.

Sadly Nicola Bartzis, our Chair, had to step down from the position in February, due to personal circumstances. She is greatly missed by us all, both for all her hardwork , and also for her friendship and support, and we would like to take this opportunity to publicly thank her for all that she did. She is not able to be here with us today, but she has sent a short statement for us to share with you.

Hello everyone.

 I’m sorry that I can’t be there, but just wanted to add a few words.

This year has seen a lot of changes – and challenges!

We have been joined by several new parents on the steering group and I’m encouraged by the interest in becoming parent reps.

Our workload has increased dramatically, mostly thanks to Ian’s tireless work raising our profile and making sure that we have been included in the new SEND workstreams. We have risen to the challenge and then some – we are always in need of more parent carers who have some spare time and would like to make a real difference.

Austerity is unfortunately still with us and will be for some time. The cuts to local government funding (and the NHS) are dreadful not just to us and our families, but to all those whose job it is to help us. I really do believe that if we work together we will have a much better chance of making the most of what we have left.

A big thank you to all the parents who have donated their time and energy over the past year, without them there would be no parent voice. And thanks also to all the professionals who have made us feel included and valued.

I stepped down as Chair because of family circumstances, and wish the new Chair and the Forum continued success for the future.


A few other important people have decided it’s time for them to step down, so we would like to say a big thank you to Lucy Lee, our Treasurer, as well as steering group members Julie Wolfendale & Suzanne Hoxworth.

Overall this has been a very busy year for the Forum. At times we have been very stretched trying to do so much. It is great to feel like we are making a difference, and we would love to start getting more involved in working with health and with the regional parent carer forum, but we need do more people to do that.

If you think you might be interested in joining the steering group or representing parents please let us know

Annual General Meeting 2016

Chair’s report AGM 2016Thank you to all those of you who were able to come to our Annual General Meeting on 26 April 2016.

We had Geraldine Hills as our speaker, followed by the election of officers, a review of the year and a look ahead to some exciting changes in 2016/17!


Here are the minutes from the meeting

20160426 AGM Minutes

plus the documents we discussed

Chair’s report AGM 2016

CEPCF Treasurer’s report APR2016-1

Cheshire East PCF Structure 2016-1


Summer? Already?

Wow, it’s officially Summer now we’re into June – where has the year gone?

I hope you all managed to enjoy the half term break (and the return to school!). We also took some time off from Forum work, but back now and raring to go.

I’m happy to tell you that the MaxCards have arrived and as soon as we have signed off the application form we can start sending them out. Until then you can check out their website here.

The next date for your diary is 7th July, when we have our next Open Forum. We are continuing our look at Education Health and Care Plans (EHCPs) and hope to draw together all the feedback we have received so far. Liz Perry, Solicitor (Disability Rights) at Slater and Gordon, will be speaking, and we will also have information about Independent Support. A session on Person Centred Planning will help us all stay focussed on our young people and as usual we offer you all a free lunch and travel and childcare expenses. Don’t forget if you have an EHCP, or are going through the process, we would really value your opinions. Our survey is still open here. Details of how to book a place will be out soon.

Back in March this year, Friday 13th actually, the Forum held an event with Mencap called “Hear My Voice”. It was about the General Election and Edward Timpson MP came along to answer some questions and meet some of our parent carers. Mencap regularly publish personal stories and requested one to present on the day. I decided to write about my son George and something I have been involved in, the #LBBill. Suzanne very kindly read it out for me as I was too emotional and you can find it here:  My story

The #LBBill means a lot to me and I am proud to have been part of the crowdsourcing and discussion that led to the first and now second draft. We are currently trying to lobby MPs and I am asking you to take a few minutes to contact your MP and ask them to support a Private Members Bill.

Click image to enlarge:



Government logo

Blog #1 Democracy

Having just taken on the role of Chair, I was going to concentrate on local issues in my first blog, and our plans for the year ahead. National events i.e. the General Election, have taken over so I’ll save that for a later date.

So what does a Tory majority government mean for us, parent carers in Cheshire East?

Well, from their manifesto the Conservatives aim to:

  • reduce spending on Welfare, making it harder to claim benefits (they still have not said how they will make £12bn savings)
  • increase spending on the NHS by £8bn a year by 2020, although this is just enough to maintain current services
  • We can expect to see more cuts to Local Authority budgets
  • Replace the Human Rights Act with a British Bill of Rights (Is that Britain with or without Scotland?)
  • increase the number of free schools

I could go on, but other people can say it much more eloquently than me (blog) – all I know is, the next 5 years are going to be tough.

So what can we do about it?

Well, we can do what we always do when we get a reality check – pick ourselves up, dust ourselves down and get stuck in with what needs to be done to make sure our children and young people get the support they need.

So we will continue our conversations with the Local Authority, Health, Social Care and Education. With the people who provide the services we use and the treatments we receive. And with the parent carers we are supposed to be representing.

Cheshire East Parent Carer Forum exists to represent ALL the parent carers of Cheshire East. We are not aligned with any political party, we aim to represent all disabilities and additional needs and ages 0 to 25. We receive funding directly from the Government (I hope that this will continue!) and we are run by a group of volunteer parent carers.

BUT we can’t represent you if we don’t know what your priorities are. We can publish survey after survey after email after text after Open Forum after consultation… None of it will make a difference if we all decide not to take part. We will do our best to make it as accessible as possible, but without YOU, your ideas, your opinions, your support, the Parent Forum won’t be able to speak out or challenge some of the tough decisions in the years ahead.

So please, when you come across a request to fill in a survey or an invitation to an event, please don’t just pass over it as too much trouble. It might be that your vote input is just what we need to make a real difference.

All comments welcome!


Chair, CEPCF

Central Cheshire Buddies – Youth Club

Shavington Youth club is open every Tuesday evening from 7pm to 9pm

The Shavington Youth club runs throughout the year, we only close for the Christmas period.

On the first visit parents need to complete a Cheshire East registration form (emergency contact details etc.) Everyone welcome to join anytime

The cost per club session is £1.00

At Shavington youth centre, CCBS work in partnership with Cheshire East Youth Service we support the Shavington Youth Club. This club is for disabled children and non disabled children.

The youth service and CCBS provide a variety of activities including badminton, football, boccia, team games, baking, film nights, arts and crafts.

During the winter months we provide hot chocolate and toast.

It is a great way to meet friends, try new things, join in with competitions and team games. Just turn up on Tuesday evenings.

For more information click here to go to the CCBS website

Hear My Voice event (13 March)

The joint event with Mencap is fast approaching and will be a fantastic opportunity for parents to discuss the things that work and the barriers we experience in relation to caring for our children.

We can then present Edward Timpson MP with a range of questions about the services we use and how he envisages the provision for children and families with disabilities in Crewe and Nantwich will look if he is re-elected in May.

To book your place, please email

We are asking for a volunteer to tell their story about their journey with their child and highlight both good and bad experiences along the way. It will involve a 5 minute presenetation at the event. We would also lilke you to record your experiences as a blog which we can put on our website for all our parents to read, many of whom will no doubt identify with your experience.

If you are interested in taking part in this way please email me and we can discuss it further.

I look forward to seeing as many of you as possible on the day so we can raise lots of questions for Mr Timpson to answer!

Suzanne Hoxworth, Chair

107 Days #Justice for LB

Today is the final day in the #Justice for LB campaign, and I wanted to add my voice to this wonderful and inspiring campaign.


LB stands for Laughing Boy, the name Sara Ryan used for her son Connor Sparrowhawk. Exactly a year ago today, after 107 days in an Assessment and Treatment Unit (ATU) in Oxfordshire, Connor passed away following an epileptic seizure in the bath. This was a completely avoidable death.

This story is one that touches me profoundly because my own son George spent 16 months in an ATU. He is autistic, non-verbal and also developed epilepsy when he was 15. At 16, he displayed increasingly challenging behaviour and eventually had a mental health crisis, becoming catatonic. He went from home to emergency respite, to our local hospital in Kent. At 16 he was too old for a children’s ward, but not old enough for an adult ward (they start at 18), so the search was on for a mental health inpatient place for a teenager. After many meetings, consultations, phone calls etc, it became clear that there was no provision nationally for adolescents with George’s combination of autism, severe learning disability and mental health issues, and nor was there any support available for him to stay either at home or nearby. Many places were looked at and discounted – we were informed by some professionals that ‘there are private places who would take him in an instant, but I wouldn’t want my child to go there’. So eventually it was agreed that he would go to an NHS adult ATU specialising in Learning Disabilities, a drive of an hour and 45minutes away.

It is easily the hardest thing I have ever had to do – let strangers look after my disabled son, who I had looked after for 16 years and who was even more vulnerable because of his mental illness.

While the ward setting was far from ideal (adults, no education, older people, hospital, his siblings couldn’t visit, they also had building work going on for a while), we were extremely lucky to find a group of people who not only cared for him, but cared about him. On my visits I saw firsthand how hard they worked, answered all their questions as they tried to understand him and together work out how best to help him. We went into something called the Care Programme Approach (CPA) and our first meeting was focussed on how to work towards discharge – very reassuring after all the crisis meetings and the realisation that he would have to leave home.

It was while George was an inpatient that the BBC Panorama programme was broadcast about Winterbourne View.

After about 6 months he was declared fit for discharge, and again we entered into the ‘finding a place for George’ challenge. We lived in Kent, so he was admitted from there, but while he was an inpatient we moved to Cheshire – cue arguments over who would fund his next placement, never mind where it would be! To cut a very long story short, I am happy to report that George was eventually discharged to a residential special school not too far from my new home and has since moved into an adult home even closer. The delays took an extra 10 months, during which time he was on the ward unnecessarily. If you have read any of the publicity surrounding Winterbourne you will be aware that it is at this point that he could have been stuck more or less indefinitely, with no one willing to use their budgets to move him from the hospital to a social, community based setting.

So today I am counting my blessings, and my heart goes out to Sara Ryan and all the other families still living my worst nightmare.

Please follow Sara’s blog and if you can donate to the #Justice for LB campaign.

We’ve got a new website! – Editor’s Blog

Editor’s Blog:

Well, after lots of sweat and tears (no blood..yet!), we have launched our new website.  We have consulted with parents and professionals along the way, to try and make the site the best it can be, but it will always be a work in progress and we need your input and feedback to ensure it remains current and relevant to you.

There are some more funky bits of functionality that we will launch in the next few months (webinars and Q&A sessions with experts) but we hope even this launch version will provide you with lots of information and useful contacts which you didn’t know before.

Ultimately, we are here to make your life and the life of your family better informed and easier.

Thanks to Thrive Creative for everything you have done for us and also to all our Parent and Associate members for your input.

Let me know what you think.

Helen xx