Our aim is for all adults with Cerebral Palsy to live their best lives.
Our movement is about positively making the changes in ourselves, and in society, so that we can live our best lives.
It is rooted in our belief in our own power, standing up for ourselves and our rights, and combatting ignorance, prejudice and indifference.
Our Vision
That all adults with Cerebral Palsy will have access to personalised and integrated medical services to meet their changing needs.
We believe that Cerebral Palsy shouldn’t be a barrier to living a full and active life. With better understanding, and dedicated and continuous medical provision, adults with Cerebral Palsy can be better supported to delay and cope with the degenerative impact Cerebral Palsy can have on the body.
We want adults with Cerebral Palsy to remain active members of society, despite their condition and changing needs.
We want to inspire all members of the Cerebral Palsy community to access their own power to make change in their lives.
Our hope is that through Up we can create, foster and give a much-needed voice to adults living with Cerebral Palsy and raise the profile of our large but currently under-represented community.
Cerebral palsy is a similar population size to MS and Parkinson’s disease but we don’t benefit from the same level of support and services
What are the Issues?
Adults with Cerebral Palsy face unique challenges that often require specialised care, such as pain management, mobility problems, and ageing-related conditions such as osteoarthritis and osteoporosis. Yet, inexplicably, co-ordinated services stop on transition to adulthood.
A lack of resources and specialist co-ordinators means responsibility for co-ordination of treatment can fall by default on to GPs. Yet they do not have sufficient knowledge to make appropriate and timely referrals – they don’t know what they don’t know. This situation is made worse by a lack of research and sharing amongst professionals into how to manage and treat conditions associated with ageing in persons with underlying neurological conditions, such as Cerebral Palsy.
The impact of these failings is unnecessary pain, reduced quality of life and avoidable medical problems for adults living with Cerebral Palsy. Not only would adequate, co-ordinated adult Cerebral Palsy services reduce unnecessary suffering, they would be cost-effective too, with the costs of prevention being much lower than those of later treatment of an aggravated condition.
Adults with Cerebral Palsy need support and a better understanding of their needs because:
- Cerebral Palsy is a lifelong condition
- There is a degenerative impact of living with a lifelong condition
- This can be better managed than it is today
- There is a big enough population to deserve our own dedicated services
Providing new nationwide specialist adult Cerebral Palsy services would cost around £20 million per annum – just 42p per day for each adult with CP.
The new specialist adult cerebral palsy service cost is estimated at £20m per annum.
The Government’s required 1 to 4 ratio of economic benefit means £80m of benefit is needed to justify spend.
This would be achieved if only 4,000 people (3% of the adult CP community) gain or are helped to stay in employment.
Medical issues that are almost unsolvable when patients come to us in their 40s could be averted if spotted earlier. While Cerebral Palsy is not a progressive condition, it does necessitate ongoing medical treatment into adulthood to offset medical issues, such as early joint degeneration, that can be extremely debilitating if left untreated.
Professor David Roye, Jr, MD
Leading paediatric orthopaedic surgeon, and the Director of the Weinberg Family Cerebral Palsy Center, New York
Campaigning in Action
All-Party Parliamentary Group on Cerebral Palsy
Real change for adults with Cerebral Palsy needs to come from politicians and policymakers in Government. To that end, we have provided key support for the All-Party Parliamentary Group on Cerebral Palsy, which has produced important reports on the situation facing people with CP in the UK. Its latest report, focuses on the issues of transition to adult healthcare services. It also looks at the barriers faced by adults with CP in the workplace, and how economic opportunities can be opened up.
We invite you to join us in exerting maximum pressure to ensure its recommendations are adopted by the Government.
Help #StampOutTheGap: Care Parity for Cerebral Palsy
This spiky campaign raised awareness that adults with Cerebral Palsy are treated like second class citizens when it comes to healthcare. It demanded that the Government ‘stamp out’ healthcare inequality and conduct a review into the care of adults with Cerebral Palsy. We continue to campaign for the 2019 NICE guidelines to be adopted and put into practice across the NHS to improve the lives of the 130,000 UK adults living with Cerebral Palsy. In short, Care Parity for Cerebral Palsy.
Our community response to COVID
During the lockdown we began to hear our community tell us that they were experiencing more pain and a deterioration of functional skills and that because of a country in lockdown they were unable to attend any regular therapy or rehabilitation. We needed to get our community moving despite the restrictions we were all living under.
We decided to run a 12-week online Movement Challenge. Led by a physiotherapist and an expert disability trainer, participants set their own specific personal goals and were fully supported by a Life coach throughout the challenge. Support included access to an online support group, sharing of daily tips and advice on how to keep moving and motivated, weekly video-chat group sessions and advice and support from fellow participants
These had huge benefit for all participant both physically and psychologically leaving those involved with new skills, knowledge and understanding as well as new “healthy habits”. We saw our participants flourish during this time and develop support systems in order that these new positive changes could continue. Taking the success forward, the following year we ran a similar programme, Spring in to Action a collaboration with our friends at CP Sport.