It is all too easy to feel overwhelmed when difficult changes happen (or are imposed on you). In the current climate letters that arrive on the doormat often contain bad news. It is so common for families to be left with a feeling of frustration and powerlessness. It can stir up the underlying grief that sits in your heart. For me its never grief about Chloe because she is the best thing in my life, its the sadness at what your child has to overcome in order to thrive. There are often so many things you are shouting about or 'highlighting' that one more issue just feels too much to bear. Our local Sense family support group met up in May and I looked round at the families that are so important to me and thought I am not going to take this lying down. To hear from other parents that their lead professional experienced and knowledgeable in multi sensory impairment had been removed and that there were some children who hadn't even had a deafblind assessment broke my heart but also put fire in my belly. It was time to take a stand for my child and all the vulnerable deafblind children in Devon who had been forgotten in the recent commissioning process.
So with some guidance from the legal and campaigns team at Sense I wrote a letter outlining in what ways Devon were breaking the law. Thanks to years of campaigning by deafblind people and charities there is a law that protects deafblind children and adults. The deafblind guidance is there to ensure deafblind people receive the support and services they require from their local authority. Somehow when Virgin Care was given the contract to run Integrated Children's Services in Devon provision for deafblind children had been removed or forgotten. There were no senior managers with responsibility for deafblind services and so our children had slipped off the radar.
The letter was instigated by me but was a robust document written with input and support from a number of families. It has taken six months and some further clarification but we are being taken seriously. We had a meeting earlier this month with the two senior managers who have now been given responsibility for deafblind services in Devon. We sat round a table together and they apologised for what had happened and said they want to work with us to address the issues we have raised. I think they are truly listening, are trying to address the situation and will resolve it as soon as possible. They also thanked me for gathering information and providing a platform where people could share their stories both good and bad.
I did not do this work for Devon County Council I did it for our deafblind children who don't have a voice. Without the right support and guidance their potential is missed. I am so proud of how Chloe lives her life. She is determined and strong and has a spirit and zest for living which is infectious. I hope when she is older she will be proud of me for fighting for the services that make such a difference in her life.
