If you have cerebral palsy, you might know the feeling. One day you have a whole team around you, physiotherapists, doctors, specialists who understand your condition inside and out. Then you turn eighteen, and it all disappears. People with CP often describe this as falling off a cliff. We think that says it all.
This year, we responded to the UK government’s call for evidence on its new Mental Health Strategy. We wanted decision makers to understand something that too often gets missed: cerebral palsy does not end at eighteen, and neither should the support that comes with it.
Why this matters
Around 130,000 people in the UK live with cerebral palsy. It is a lifelong condition, but the care system does not always treat it that way. Research consistently shows that adults with CP are more likely to experience anxiety and depression than the general population. Chronic pain, poor sleep, difficulty getting around, and isolation all play a part. Mental health struggles can, in turn, make it harder to plan, organise, and make decisions day to day.
The knock on effects reach into every part of life. In Denmark, researchers found that only one in three adults with CP were in work, with thinking and planning difficulties identified as a major barrier. We do not have equivalent UK figures, and that is part of the problem too, which we come back to below.
What we’re asking for
We believe the answer already exists, it just needs to be built properly and rolled out everywhere. NICE, the body that sets clinical guidelines in England, published clear guidance on cerebral palsy in adults back in 2019 (called NG119). It sets out what good care should look like: physiotherapy, occupational therapy, speech and language therapy, specialist CP services, and crucially, mental health support, all joined up rather than scattered.
Some places are already showing what this can look like. University College London Hospitals runs an Adult Cerebral Palsy Service that brings mental health support into the same team as physical care. St George’s in Wandsworth has a Community Neuro Team doing similar work. In Sweden, the CPUP programme follows people with CP throughout their lives, and Norway has built mental health directly into its national CP guidance. England already does this well for children, through the Cerebral Palsy Integrated Pathway. We are asking for the same commitment to be made for adults.
We are calling for:
- A national adult cerebral palsy care pathway, built on the NICE guideline, rolled out consistently across England rather than depending on where you happen to live.
- Community Neuro Teams available to all adults with CP, bringing mental health support alongside physical care rather than treating them separately.
- Regular GP health reviews, so physical and mental health concerns get picked up early, not after a crisis.
- A commissioning framework for adult CP services, similar to the one that already exists for children, so services are funded and planned properly.
- Better data. Right now, cerebral palsy is often recorded inconsistently in health records, so nobody has an accurate picture of how many adults are living with the condition or what they actually need. A proper national registry would change that.
Where organisations like UP fit in
Good clinical care is essential, but it is not the whole picture. Peer support, creative activities, mindfulness, and simply connecting with people who get it all make a real difference to wellbeing. That is exactly what we try to offer through spaces like our Virtual Community Centre, and we know from experience how much it helps people feel less isolated and more able to cope with everyday challenges. We also think support for young people navigating the move from children’s to adult services deserves more attention, because that is often where things start to go wrong.
This is about all of us
Recognising both the physical and mental health needs of adults with CP is not a nice to have. It is what a lifelong condition actually requires. We put this evidence forward because we hear from our community every day about what falling through the gaps really feels like, and we think it is time that was reflected in national policy.
Click here to view our submission to the Department of Health & Social Care