UP – The Adult Cerebral Palsy Movement – has responded to the Government’s consultation on proposed changes to specialised rehabilitation services, calling for adults with cerebral palsy to be explicitly recognised and included.
We welcomed the opportunity to contribute to this important consultation and to make sure that the voices and experiences of our community are heard.
Our message is simple: adults with cerebral palsy have lifelong rehabilitation needs, and these must be recognised in the health system.
Cerebral palsy is a lifelong condition that requires proactive symptom management. Rehabilitation services can provide the multidisciplinary support adults with CP need to manage symptoms, maintain function, stay active in society and thrive.
Unfortunately, the proposed specialised service specification does not recognise the needs of our community, or those of others with childhood-onset disabilities. Under the current proposal, our community would not have access to specialised rehabilitation services. In our response, we made clear that access to these services is crucial for our community to manage our condition, improve health outcomes and maintain our level of function.
We have called on Government to:
Recognise cerebral palsy as a lifelong rehabilitation need. Adults with CP should be explicitly included in the future rehabilitation framework, alongside other childhood-onset lifelong conditions.
Ensure rehabilitation supports people throughout their lives, not only after an incident. For adults with CP, rehabilitation is not simply about recovery after an injury or illness. It is also about maintaining function, managing changing needs, preventing avoidable deterioration and supporting people to live the lives they choose.
Improve the transition from children’s to adult services. Young people with CP can face gaps in support as they move into adulthood, so there must be clear pathways to prevent people from falling between services.
Ensure access does not depend on where someone lives. We want a consistent approach across the country, so adults with CP do not face a postcode lottery when trying to access rehabilitation and specialist support.
Too many adults with cerebral palsy already struggle to find the right support, particularly after moving beyond children’s services. This consultation was an important opportunity to highlight that gap and make the case for change.
We will continue working to ensure adults with CP are seen, heard and included in decisions about the health services they need.
Our message to Government is clear: people with childhood-onset lifelong disabilities need lifelong rehabilitation support. Adults with cerebral palsy must have access to rehabilitation services under the new specialised service specification.