A message for our community
National health and care policy is changing. With a new Prime Minister, a new Cabinet and a Health Bill that would shift more decision-making to regional and local levels, this is a crucial moment for adults with cerebral palsy and the people who support them.
But our message has not changed: adults with cerebral palsy need consistent, joined-up care wherever they live.
What we are calling for
- The nationwide implementation of an adult cerebral palsy care pathway.
- Annual health reviews with GPs as part of that pathway.
- Community-based support through Community Neuro Teams.
- Unified coding for cerebral palsy and a national registry, so adults with CP are properly counted, understood and planned for.
Why your voice matters
One of the biggest barriers to change is the lack of national data on the care and support adults with cerebral palsy currently receive. Too many people experience a sudden “cliff edge” when childhood services end, leaving them without the specialist support they need in adulthood.
Decision-makers need evidence. Your experience can help show what is missing, what is working and why an adult CP care pathway is urgently needed.
Take action now
The single most powerful thing you can do: share your experience of health and care services for adults with cerebral palsy through Healthwatch’s online survey: https://www.healthwatch.co.uk/have-your-say
You can complete the form more than once if you want to comment on different services, such as GP services, hospital inpatient or outpatient care, social care or another service issue.
Please find guidance on how to fill out the form here.
This is urgent. The Health Bill currently before Parliament includes proposals to abolish Healthwatch, which could remove an important independent route for people to share their experiences of health and social care.
If we want adults with CP to be seen, counted and supported, we need to speak up now, while that route is still open.
After you have shared your experience
If you contact your local Healthwatch directly, or if they contact you, please share our campaign description with them so they understand why adult cerebral palsy care must be part of local health and care planning. Please find the description here.
Please also let us know when you have written to Healthwatch by contacting our Advocacy Lead: denise@upmovement.org.uk
Every experience matters. Every response helps build the evidence. Together, we can push for the adult CP care pathway our community needs.
Join our community of UP Advocates. Find out more here.