I beg to move,
That this House has considered the national service specification for adult cerebral palsy in the NHS.
It is a pleasure to serve under your chairship, Ms Jardine. I am grateful to secure this debate. Approximately 130,000 adults in the UK have cerebral palsy. Although the NHS now officially categorises it as a lifelong condition, there is clear evidence that specialist support stops at the age of 18. A national service specification for adult cerebral palsy in the NHS would ensure that the transition from childhood to adulthood is supported by relevant healthcare services and the necessary support. It would ensure that support continues to be provided throughout adulthood. I pay tribute to Up—the Adult Cerebral Palsy Movement, and Action Cerebral Palsy, for their dedicated advocacy for people with cerebral palsy throughout the UK, their campaigning on this issue and their support in preparing for this debate.
I will start by talking about my experience. As hon. Members will be aware, one of my daughters has cerebral palsy. Although she is still a child, I remain concerned about the level of support that will be provided to her when she reaches adulthood—a concern that I am sure many parents of children with cerebral palsy will relate to. During childhood, layers of support are provided, ranging from paediatricians to services that often are supplied at school and through the NHS such as physiotherapy, speech and language support, and occupational therapy. Parents are rightly concerned about what the transition at 18 looks like and whether wraparound healthcare remains. Sadly, the reality for many people with cerebral palsy is that after the transition, they are left with little support for their health needs and to help them function in life, including for day-to-day activities such as work.
Throughout this debate I will refer to the 2022 report of the all-party parliamentary group on cerebral palsy, “Barriers for adults with Cerebral Palsy on achieving full life participation: access to healthcare services and progressing at work”. Although the APPG is now disbanded, the key recommendations remain relevant. I pay tribute to my hon. Friend the Member for City of Durham (Mary Kelly Foy) and the former Member for Blackpool North and Cleveleys, Paul Maynard, for their work to commission the report.
For many adults with cerebral palsy, their experience is similar: they receive care and support through paediatric services before reaching adulthood, then find themselves facing a cliff edge. In essence, they are left without the support that they received for the first 18 years of their life. Cerebral palsy affects about one in every 400 children in the UK, but the severity of each child’s cerebral palsy varies greatly, and many have more complex issues, with one in two having a learning disability and one in four having a severe learning disability.
The first recommendation in the APPG report outlines that NHS England and social care, education and employment specialists must agree a national service specification for adult cerebral palsy, to be commissioned based on the needs of local populations within the 42 integrated care boards across England. Furthermore, in the 10-year health plan, the Government made the commitment that 95% of people with complex needs should have an agreed personal care plan by 2027. Many adults with cerebral palsy have complex needs and, with that, elevated health risks. They are 14 times more likely to die from respiratory disease and three times more likely to die from cardiovascular disease. In 2023, a review of 69 studies to assess the prevalence and incidence of chronic conditions among adults with cerebral palsy showed that 21% had depression, 21% had anxiety, 24% had asthma, 28% had epilepsy, 32%8 had incontinence and 38% had malnutrition.
I would welcome the Minister’s response outlining how the commitment in the 10-year health plan can be achieved for adults with cerebral palsy. I would also welcome the Minister considering how a national service specification for adult cerebral palsy could be implemented within the 42 ICBs, including by encouraging ICBs to implement the NHS framework for the commissioning of services for children and young people with cerebral palsy as a blueprint for adult cerebral palsy commissioning and provision.
In March 2021, the then APPG on cerebral palsy published its first report, entitled “Early identification, intervention and pathways of care of infants and young children with cerebral palsy: the case for reform and investment”. One of the report’s key recommendations was that all health authorities should be required to implement NICE—National Institute for Health and Care Excellence—guidelines. Dr Charlie Fairhurst, head of children’s neurosciences at the Evelina London children’s hospital and chair of the committee for NICE guidelines on cerebral palsy, accepted those recommendations, which have been implemented in the NICE guidelines for children. It is therefore disappointing that the recommendations for adults outlined in the 2022 report, including the full implementation of NICE guidelines, have not been implemented for adult cerebral palsy in the NHS.
In May 2025, NHS England published the commissioning framework for children and young people with cerebral palsy. The framework aims to simplify and summarise the existing guidance available. It also highlights best-practice care pathways that could be replicated by other systems and enables systems to identify population need through data. Over the past year, eight ICBs have been piloting that framework for children, which involves undertaking a baselining exercise to understand existing service provision and to identify service gaps for children with cerebral palsy. However, as we know—and as the 2022 APPG report highlighted—the needs of local populations differ across the country, and the results from just eight ICBs are not enough to provide an accurate representation of the effectiveness of the framework.
The existing postcode lottery of specialist support constrains the lives of adults with cerebral palsy and results in worse health outcomes, not to mention lower education and employment participation for individuals, with the subsequent substantial economic loss. Analysis from the Northern Ireland cerebral palsy register has shown that the prevalence of cerebral palsy in adults is comparable to that of multiple sclerosis or Parkinson’s disease.