This week I had the pleasure of meeting with Emma and Miriam from the charity, Adult CP Hub. Based in London they travelled up to Derby to tell me all about the charity’s aims and how I may be of assistance.
Emma, who has right sided hemiplegia, the same form of Cerebral Palsy (CP) as me was, until recently a speech and language therapist in the NHS, whilst Miriam is a physiotherapist.
We talked at length about the huge variations in the treatment options for adults living with CP, dependent upon where you live in the UK. It soon became apparent to me that the access I have to Dr Lin, a rehabilitation consultant based at the Royal Derby Hospital once a year for an ‘MOT’ is quite unique. Albeit this is something that I had to fight hard for some years ago.
So, the primary aim of the Adult CP Hub is to campaign for the NHS to adopt the guidelines for adults living with CP that were published by the National Institute for Clinical Excellence last month, setting out the ‘gold standard’ treatment options.
The charity also wants to establish a website which gives those with CP access to a wealth of information and provides details of best practice examples from across the country.
Emma and Miriam showed me the business plan for the Adult CP Hub, which contains some very exciting milestones. I went away from the meeting enthused and I now long forward to working closely with the charity.
It is most definitely a case of watch this space over the coming months #cpandproud 😊