I am married to Ken who is now retired and we have two children both in their twenties. Our daughter is Autistic, has a severe Learning Disability and has a progressive physical disability which affects her legs called Hereditary Spastic Paraplegia (HSP) all of which classes her as a young person with complex needs. She currently lives at home with us and attends a local college where she is doing supported internship. We are starting to look at a life beyond her living at home which is scary.
I am one of the founding members of the Parent Carer Forum in Sunderland and its current chair. We set up the forum in 2008 with a £500 grant from the LA and have grown from a group of parents coming together for coffee and chat to a parent led constituted group who works strategically with the LA SEND team, the CCG and local commissioners. We still like to get together and have coffee and chat.
I was honoured to become the NE and Cumbria representative of the NNPCF in 2013 representing the 13 LA areas that stretch from the Scottish boarder in the north to the Yorkshire border in the south and covering the width of the country from the North to the Irish Sea. A diverse region with rural populations, bustling cities and everything else in between. The region is full of committed parent carer forums who try to work together for the benefit of all children and young people with SEND across the region.
In 2015 I was elected to be one of the co-chairs of the NNPCF a role which I have found fascinating and terrifying in equal measures. However I firmly believe that it is only by working with others that the outcomes that any parent wants for their children and young person can be achieved. This is particularly so for the parents of children and young people with SEND and it is up to us to keep reminding all partners that our children and young people are first and foremost children and young people.
I became the NNPCF steering group rep for the North East and Cumbria in May 2013, and more recently, I was appointed as co-chair. For the last few years I have become fully immersed in the work of the National Network and I find it fascinating. Considering that all the Local Authorities in the country are supposed to be working to the same system how come the outcomes for children, young people and their families are so different in different areas?
In addition to the work I do for the forum and the Network I am also an Elder at my Church, a governor at the school my daughter used to attend, a Director of the multi Academy Trust and vice chair of Special Olympics Sunderland, which my daughter has been a member of for 6 years. All this is made possible due to the fact that Ken retired a couple of years ago so he can keep the home fires burning while I go and conquer the world. But seriously, Ken and I both believe that you have no right to complain about something if you are not prepared to do something about it yourself. Everyone can do something it doesn’t always have to be big things, lots of small things can make a really big difference.