One of the driving forces behind Adult Cerebral Palsy Hub is our work towards securing improved medical care for Adults with Cerebral Palsy. We believe that to provide optimum care for adults with Cerebral Palsy, change is required to reconfigure health care services to meet the requirements as laid out in the guidelines published by The National Institute of Clinical Excellence (NICE) in January of this year.
We recognise that to make change within the structures of the NHS is not a simple task. Over the past few months we have worked hard to galvanise the medical community into action. However, it has become very clear that in order to achieve clear integrated care pathways dedicated to adults with Cerebral Palsy, pressure needs to come from outside the healthcare system as well.
We need to raise the profile of the needs of adults with Cerebral Palsy in Parliament and ask for support with the development of a National Framework of care.
Last week thanks to the tenacity of ex Para-Olympian and Adult Cerebral Palsy Hub Ambassador Leon Taylor, Emma and Miriam together with Leon and his wife met with The Shadow Disabilities Minister, Marsha De Cordoba to make this case.
The meeting went very well and the Minister, seemed generally surprised at the numbers of people affected by Cerebral Palsy in this country and recognised the disparity in profile of cerebral palsy in comparison with other condition such as Multiple Sclerosis, Parkinson’s Disease and Autism.
Marsha De Cordoba was incredibly engaged with the issues and took pains to understand what the changes have been in the understanding of Cerebral Palsy and why this necessitates better and different health care for adults. She recognised that the issues for adults with Cerebral Palsy are multi-faceted and understood why we needed to raise the profile of Cerebral Palsy as a lifelong condition amongst her parliamentary colleagues.
To help us with this in the first instance, she offered us the opportunity to host a reception at Parliament to coincide with World CP Day; which takes place this year on Sunday 6th October, in order to raise the profile of the issues we addressed. She also agreed to helping us with introductions to members of the Health and Social Care Committee and to address this directly to government ministers through posing oral and written questions in Parliament. We also discussed that unlike many other conditions, there is not currently an All Parliamentary Group for Cerebral Palsy and she offered to guide us in establishing one.
We left the meeting feeling very positive and that the Shadow Minister for Disabilities, had clearly heard and understood the issues and challenges faced by adults like Leon and Emma. We are grateful for her support in building the political dialogue we require for the development of a National Framework of Care, and we will be working hard to take some of her suggestions forward, starting with organising an event in parliament to celebrate World CP day in October.
