Making change happen

Adults with cerebral palsy (CP) are the largest group of people living with a lifelong condition in the UK. Yet too often, adult CP is overlooked.

Services fall away after childhood. Awareness among professionals is low. Many adults are left to navigate a fragmented system alone – repeatedly explaining their condition, fighting for referrals, and managing preventable health issues without support.

Our advocacy priorities

GPs for CP – Clear clinical guidance for GPs, longer appointments where needed, and defined referral pathways to specialist services.

Transition reform – planned, coordinated transition into adult services at 18 – a bridge, not a cliff edge.

Specialist adult CP services – Multidisciplinary services that understand cerebral palsy across the lifespan, not just in childhood.

Data and evidence – Making adults with CP visible in health data and using research to influence policy and commissioning decisions.

Local advocacy – Supporting our members to challenge decisions, raise concerns, and speak directly to local leaders about gaps in care.

Cerebral Palsy Awareness Month: March

This World Cerebral Palsy Awareness Month, we are coming together to campaign with YOUR changemakers, chosen by the UP community.

Together, we’re shining a spotlight on one of the biggest gaps in adult CP care: primary healthcare.

Why adults with CP are falling through the cracks of primary care

Although cerebral palsy is recognised by the NHS as a lifelong condition, meaningful support for people with CP often disappears at 18.

Our campaign is calling on the Government to ensure all adults with CP can access preventive healthcare – not just crisis care.

We are calling for:

  • • Clear clinical guidance for GPs on managing adult cerebral palsy
    • Defined referral pathways to specialist adult CP services
    • Longer GP appointments where needed
    • Better communication between GPs, hospitals and community teams
    • Formal recognition of CP as a lifelong condition in health checks
    • Inclusion of adults with CP in the Quality and Outcomes Framework (QOF)

If you’re under 50 and have CP, annual health checks are currently unavailable.

This has to change.

What you can do

  • • Write to your MP
    • Share your lived experience
    • Talk to your GP
    • Use #TheDoctorWontSeeUsNow on social media
    • Become an UP Advocate

To get involved: sign up to be an UP Advocate by emailing emma@upmovement.org.uk.

Your voice matters – and together, our voices are harder to ignore.

Letter templates

You can adapt the templates below to reflect your own experiences. Personal stories are powerful.

Template 1 – Email to MP from person with cerebral palsy

Template 2 – Email to MP from carer of an adult with cerebral palsy

Template 3 – Email to MP from parent of a young person approaching adulthood

Template 4 – Email to MP from ally of the CP community

Discover how you can become an UP Advocate to add your voice to the campaigns that matter to you.

Because change doesn’t happen by itself. It happens when we demand it – together.

Be there when it matters

Parliamentary Lobby | March 18, 2026 at 3pm
We’re taking our campaign for Annual Reviews directly to MPs and peers. Join us at Parliament to demand the healthcare adults with CP deserve. We’ll provide full training and support. You bring your voice. Watch out for updates.