A new set of guidelines has been published today by the National Institute for Health and Care Excellence (NICE) to address variation in the provision of services for adults with cerebral palsy.
It aims to help local and regional services provide consistent clear pathways of clinical and social care and sets out what’s needed to tackle the variation that exists in the provision of specific services for adults with cerebral palsy.
Emma Livingstone, Co-founder of the charity Adult Cerebral Palsy Hub and 42 year old mother of 3 says, who was diagnosed with the condition as a young child, has responded; “We welcome the NICE guidelines, it’s a start in recognising that people with Cerebral Palsy (CP) require their own bespoke services delivering clinical pathways to receive healthcare. It is written to a Gold Standard, highlighting how we can improve services for people with CP. We look forward to seeing changes in the clinical landscape and as a charity we are looking at the way those services are delivered to best meet the needs of people with CP.”
Emma continues, “Whilst bespoke services and clinical pathways for Parkinson’s Disease, MS and MND are comparatively well developed, there is no equivalent specialised services for adults with Cerebral Palsy.”
There are 111,000 people living with Cerebral Palsy in the UK and two thirds of those are adults. CP is a lifelong condition and most adults with CP will experience degenerative changes leading to a decline in their mobility by the time they are 40. Consequently, they will require increased specialist medical care.
The numbers of people with CP in the UK (and globally) are similar to those with Parkinson’s Disease (145,000), Multiple Sclerosis (100,000) and Motor Neurone Disease (45,000).
Miriam Creeger MCSP HCP Neurophysiotherapist and Co-founder of Adult Cerebral Palsy Hub, adds, “We want CCG’s to create integrated pathways so that people with CP have bespoke services that they can access. Services need reconfiguring to keep people active and mobile for longer, this will create less of a strain on the NHS”.
“Sharing good practice and expertise to improve the understanding of health conditions associated with CP within multidisciplinary teams of specialists across healthcare settings would help support people living with CP to stay active and independent members of society for longer and improve their chances of better physical health and better mental health too.”
“Whether people receive medical support for their changing needs will be down to how hard they can fight for it and which part of the UK they live in. We hope that the NICE Guidelines herald the beginning of an improvement in access to the quality of medical care for people living with CP.”