The case for a National Service Specification for Adult Cerebral Palsy in the NHS

This month, I secured a Westminster Hall debate on the need for a national service specification for adult cerebral palsy in the NHS.

In the UK, 130,000 adults have cerebral palsy. Despite the NHS now categorising cerebral palsy as a lifelong condition, there is clear evidence that specialist support stops at 18. More can and must be done to ensure that the transition from childhood to adulthood is supported by relevant healthcare services and the necessary support.

As a parent of a child with cerebral palsy, this is not a hypothetical concern for me, it is deeply personal. Throughout childhood, families often rely on a robust network of paediatricians, physiotherapists, speech and language therapists, and occupational therapists.

But when young people with cerebral palsy reach adulthood, the current reality is that there is just too little support, leaving many facing what has been described as a “cliff-edge” – suddenly without the support they had been experiencing for the first 18 years of their lives.

Adults with cerebral palsy face far higher rates of chronic illnesses. A review undertaken in 2023 to assess the prevalence and incidence of chronic conditions among adults with Cerebral Palsy showed that 28% have epilepsy, 32% have incontinence and 38% have malnutrition. Many also have complex needs, and with that, significant elevated health risks. Adults with Cerebral Palsy are 14 times more likely to die from respiratory disease and 4 times more likely to die from cardiovascular disease. Yet services do not reflect this increased need.

The All-Party Parliamentary Group on Cerebral Palsy has now disbanded, but I referred substantially to their 2022 report called ‘Barriers for adults with Cerebral Palsy on achieving full life participation: access to health services and progressing at work’ throughout the debate. I would also like to pay tribute to the former Chairs of the APPG – Mary Kelly Foy MP and the former Member of Parliament, Paul Maynard.

The report’s recommendations remain relevant today and I focused specifically on the first half of the recommendations which spoke to current health services and provisions.

The first recommendation in the APPG report therefore sought to introduce a national service specification for adult Cerebral Palsy, to be commissioned based on the needs of local populations within the 42 ICB areas across England. This would ensure that the transition from childhood to adulthood is properly managed and that specialist support continues after 18.

Whilst I welcome the NHS England commissioning framework for children and young people with cerebral palsy published in May 2025, it is currently only being piloted by 8 out of 42 ICBs. The current postcode lottery of specialist support and the difference in the needs of local populations across the country mean that the results from just 8 ICBs will not be enough to provide an accurate representation of the effectiveness of the framework. I would encourage ICBs across the country to implement this framework.

I also believe that Ministers should undertake to review the remaining recommendations outlined in the APPG report, including extending the Quality and Outcomes Framework to incorporate the creation of general practice-level Cerebral Palsy registers.

The third key recommendation in the report outlined the need for training covering adults with cerebral palsy for those working in general medicine, general practice and nursing from an entry level. Written evidence included in the 2022 APPG report outlined that medical undergraduate students do not receive training about cerebral palsy in adults.

The fourth recommendation suggests that each ICB should undertake a gap analysis of existing Cerebral Palsy services for adults against NICE guidelines and use the result to inform and guide their local commissioning decisions.

Finally, recommendation five presses for ringfenced funding to be provided to ICBs to allow them to develop much-needed specialist services at a local level.

Until there is a national service specification for adult cerebral palsy in the NHS, specialist support will not be consistently provided across the country. I will continue to press for change until adults with cerebral palsy finally receive the care, support, and dignity they deserve.