Suzanne Hoxworth – Chairperson
I became involved with the forum March 2013, volunteering to be acting Vice- chair. I have four children and two stepchildren ranging from the ages of 22 down to 7. My 11 year old daughter, Poppy, has a severe learning disability and this has changed my life. I joined the forum because I feel parents need to take some responsibility to help shape the services available to help improve the lives of our children and families. The forum allows us to gather vital information to make this happen.
Lucy Wilcox – Treasurer
I am the Treasurer of the Cheshire East Parent Carer Forum. I have a son called Stanley who is 5 and has a rare chromosomal disorder called 15Q duplication syndrome, he has also been diagnosed with autism. Stanley currently does a dual placement spending 3 days per week at a special school and 2 days per week at a mainstream school with 1-2-1 support. I also have a daughter Molly who is aged 9 with no additional needs.
I wanted to join the Parent Carer Forum for a number of reasons. When Stanley was first diagnosed it was a huge shock and one of the things that helped me most through that difficult initial period was the help and support of the various charities and organisations that I was put into contact with. I signed up with the Parent Carer Forum at this time but initially I didn’t have the time to do a lot so I just responded to surveys and attended the open events. My circumstances changed which meant that I had more spare time and I wanted to use this time productively so I decided I would do some voluntary work. At this time the Forum contacted its members and asked if anyone was interested in becoming a treasurer, this was a perfect fit as I had recently completed a bookkeeping qualification so I decided to give it a go.
I am really enjoying being part of the forum, its great to feel that you are making a difference to services that will impact your child. I also love meeting all the other parents as it can be very isolating being a parent with a child with special needs, especially when you are a single mum like me. It helps to build my confidence which benefits me in other areas of my life. It means that I am well informed about services and potential changes in Cheshire East which helps me plan the best way to ensure that my child can get the best possible support. The great thing about the forum is that parent participation can be at any level ranging from giving your views via surveys or emails to attending regional and national meetings. There is no pressure to do more than you want, everyone who is a member of the forum has a child with additional needs so completely understands that the time you can give will vary. It is very rewarding and its great to see so many parents coming together and professionals listening to us and taking our views into account
Nicola Bartzis – Steering Group Member (events co-ordinator)
I have 4 children, including 2 on the autistic spectrum. George is 19 and the most complex: he was diagnosed with autism and severe learning difficulties aged 3, developed Blount’s disease(Bow legs) at 12 and was in and out of a wheelchair for 3 years whilst this was treated with major surgery, then at 15 also developed epilepsy. At 16, he was admitted to an adult Assessment and Treatment psychiatric unit and diagnosed with catatonic schizophrenia. Thankfully, he has made very good progress and is currently sharing a house with another young man in Winsford.
Matthew is 12 and ‘just’ has Asperger’s syndrome. I say ‘just’, but actually the difficulties we have faced and are facing are different, but just as devastating to us as were George’s – each child is unique, and needs to feel valued and accepted for themselves. Dealing with so many different agencies over the years has been a struggle, but the experience is not all negative – there are some wonderful people out there working to make our lives a little easier.
I’ve been an active parent more or less since George was diagnosed and I’ve seen first hand the changes that have happened in that time. I remember what it was like before the internet…when there were no leisure activities in school holidays, no childcare facilities, no reasonable adjustments! Like the parents who came before us, whose children were taken away to live out their lives in red brick institutions, we complained, we got organised, and bit by bit things changed. It takes time but everything we are able to do, we can because of the parents who came before us and made our lives easier and I for one am very grateful to them all. So for me, being involved is not just about making things better for my children, but all children and young people, including those who will benefit from our actions in the years to come.
We stand on the shoulders of giants.
Helen Davies – Vice Chairperson
My 3 year old daughter Megan has an undiagnosed condition which means she is completely blind, has no mobility and severe learning disability.
I have been a member of Cheshire East Parent Carer Forum since 2012 and an active member of the Steering Group since August 2013. I wish I had found out about it sooner, when I first realised my little girl Megan had additional needs, as I spent what seems like a long time aimlessly searching for people who understood how I felt, who could offer advice and signpost me to information.
That’s why I feel very passionately about raising awareness of the Cheshire East Parent Carer Forum and reaching those parents who need us. I want to make sure we provide the right help and advice when people need it, engage with them to provide feedback on services and help co-design health, education and social care provision for the future.
As the communications lead in the group, my aim is for us to put our arms round the parent carers in the community and make a positive difference to the lives of them and their families.
Ann Evans – Steering Group Member
I have two adult children, including Aidan, a 20 year with autism spectrum disorder, who attends a specialist college. Over the last 16 years, following Aidan’s diagnosis, I have negotiated the often confusing web of services and service providers. Aidan has attended some excellent schools and many of our other encounters with services have often been first class. However, we have also had some negative and distressing experiences. I joined the Parent Carer Forum because I want to do my bit to improve provision for all young people with disabilities and I firmly believe that the best way to achieve this to involve users and their parents and carers from the outset.