Part of the Stories of Change project. Film by Gemma Thorpe; image by Kay Aitch.
Sarah’s son, John, born a healthy baby, suffered brain damage due to medical negligence at three weeks old. This left him partially sighted with a hemiplegia affecting his right hand. He suffers from epilepsy, has severe learning disabilities and is on the autistic spectrum.
John inspires and humbles me every day. The effect on him, how he has struggled to live in a world that is clearly not easy for someone with his problems has been massive. He has struggled for the past 19 years. John is now transitioning to adult services, which has brought new challenges and frustrations. It is me that has researched and planned adult provision for my son. (It took me two years to do this.) It is always me that that has to chase up issues with various agencies. The services we have received have been minimal really. There is a strange mix of pride, feeling guilty for needing, that often gets in the way of families like mine asking for the help that we need.
I dread accessing front line services. It’s like being in the midst of a challenging mental and physical game. I feel powerless and so frustrated. I can only assume that the people who work there are also under stress which causes them to respond unprofessionally.
Privatisation of services means you have to ‘shop around’ yourself. Thankfully, after much hard work, John now has an individual budget that meets most of his needs. Privatisation of services gives choice. John now attends a farm three days a week. This has been the most positive experience where he has blossomed unbelievably, in ways I never thought possible.
I have to work hard at managing John’s life. Researching what is out there to ensure that John’s needs are met has taken me hours and hours. It is me that vets these places – is this person, place, going to be able to meet John’s needs; is this place safe for my son? I often wonder what checks many of these places that offer adult provision undergo.
Sadly, experiences of social run services is very, very poor. The lack of communication, and, again, dishonesty dumbfounds me.
What can make my situation better? A continuity of someone who I can call upon should I need advice and help, which isn’t very often. Once the transition process is over, Helen, the Social Worker who is professional, works with me in a calm, supportive and intelligent way, will no longer be involved…..we will be ‘transferred’ over to adult social care. This means that we will not have a social worker allocated to John, who knows and understands his needs, and us as a family. I am told that if I need help, whoever is on duty, they will sort out the issue. No continuity or understanding of John…. and this leaves me feeling sad, very unsupported and fearing the future.
Stories of Change is a collaborative project between Sheffield First Partnership’s Better Connected Programme, the University of Sheffield, local artists, and people of Sheffield; it is investigating how public services can be better connected to the actual needs of people who use them. By bringing together people from different communities and age groups, this project will help to frame an overall picture of how different kinds of crises might complicate the connection between people and public services.