I am a young man (19) and have cerebral palsy.
I am studying Architecture at Cardiff University. I got three A-levels in:
I will share my experiences of health care and how it has affected my life.
I will give examples of events which had a big impact on me.
Over the past 19 years I have been to many different health services, from GPs to a Pain Clinic. At first, my parents had trouble getting the doctors to tell them what was wrong with me.[[[image-1 small left]]]
There have been many difficulties in getting the right care for me whether it was speech therapy or asking to see a different doctor. Services were provided that I didn’t need and we had to fight to get those services I did need, e.g. occupational therapy.
Nearly all of my appointments were during school hours and so I had to take time out from my education. For any child this would be unhelpful but for someone who has additional needs it was extremely unhelpful.
My mother had worked out that if I had just one appointment every six weeks by the end of primary school I would have lost a whole term’s worth of education. We had some interesting debates with appointment services when re-arranging appointments so they were outside of school time.
I will discuss how one consultant setup a Saturday morning clinic so that he could clear the back log of simple operations. He then received two letters on the same day. The first congratulating him on reducing the list, the second telling him to stop as it was costing too much. What is the price of improving a child’s life?
What is the cost of not doing all a service can do to improve the life of someone with a long term condition?
I will also discuss the occasion I had to go to Accident and Emergency around 11pm as I was very ill, so my GP wanted to check everything was ok.
When my details were taken the nurse noticed that I was sixteen and said to my parents that I would have to go to the adult hospital. My mother refused as I was under the care of two consultants at the children’s hospital. It was only because my mother said this clearly and firmly that the nurse actually listened, this is just one example of many when practitioners do not put the patient first.
In the past I have found that practitioners would talk to my parents first and then talk to me.
At around fifteen years of age there was a big change when the practitioners would talk with me first and then ask for clarification (if needed) from my parents. This has always worked well for my family and me.
Since moving to adult services contrary to what we had been told I have found the health services are getting better and better, overall it has been a very positive experience. It does however really depend on individual practitioners and their attitude to people who have disabilities and patients in general.
I will conclude by briefly sharing the frustration of health and social services insisting on asking me to complete forms in handwriting. I can only sign my signature and even though they are told this they still won’t provide the forms electronically. This really affects my independence and privacy.
If you woud like to get in touch with the Social History of Learning Disability (SHLD) Research Group, please contact:
Chair of the Social History of Learning Disability (SHLD) Research Group
School of Health, Wellbeing and Social Care
Faculty of Wellbeing, Education and Language Studies
The Open University
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