Adult Cerebral Palsy: National Service Specification

Jim Shannon Excerpts

Tuesday 10th March 2026 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman for securing this debate, and I thank him for sharing his personal story. That personal knowledge adds to the debate.

Studies by Queen’s University Belfast indicates that adults with cerebral palsy often struggle to navigate adult health and rehabilitation services after moving on from paediatric services. That can limit their access to physiotherapy, occupational therapy, speech and language therapy, orthopaedics and neurology. Does he agree that the best way to navigate this issue is to establish a clear, co-ordinated transition pathway from paediatric to adult services, with dedicated case management so that nobody is left behind when it comes to their care?

[Daniel Francis]

I absolutely agree. Between the APPG’s 2022 recommendations and the example the hon. Member gave of the analysis in Northern Ireland, it is clear that the evidence is there, and hopefully we will hear from the Minister about how we can continue to progress some of those matters.

I would welcome a commitment from ICBs across the country to implement the framework as a blueprint for adult cerebral palsy commissioning and provision, as the hon. Member outlined.

The 2022 report’s second recommendation highlighted the need to support GPs in identifying adults with cerebral palsy by extending the UK-wide quality and outcomes framework to incorporate the creation of general practice-level cerebral palsy registers along the lines of the expansion of the QOF to learning disabilities. That would make a profound difference in the health outcomes of children with cerebral palsy when they transition into adulthood care pathways. Would the Minister look to extend the quality and outcomes framework to incorporate the creation of general practice-level cerebral palsy registers, similar to the expansion of the quality and outcomes framework to learning disabilities?

The third recommendation aims to ease the transition into adult care pathways through a national service specification for adults with cerebral palsy in the NHS, which must include training covering adults with cerebral palsy for those working in general medicine, general practice and nursing from entry level. For many adults with cerebral palsy, their primary co-ordinator of care is their GP, who, despite their best efforts, often does not have the specialist knowledge or training to support their patients.

Written evidence submitted to the APPG as part of the report highlighted that medical undergraduate students do not receive training about cerebral palsy in adults. One way to support GPs in identifying adults with cerebral palsy is to extend the UK-wide quality and outcomes framework to incorporate the creation of general practice-level cerebral palsy registers along the lines of the expansion of the quality and outcomes framework to learning disabilities. That would make a profound difference in the health outcomes of children with cerebral palsy when they transition into adulthood care pathways. Would the Minister outline how the current NHS staffing guidelines could be amended to include the incorporation of training for those in general medicine, general practice and nursing from an entry level to cover adults with cerebral palsy?

The report’s fourth recommendation outlined that each ICB should be required to undertake a gap analysis of existing cerebral palsy services for adults against NICE guidance and use the results to inform and guide their local commissioning decisions. This must include investment in services to support and address associated conditions. The results should then be used to establish regional multidisciplinary cerebral palsy clinics for adults, providing access to a range of psychological, physical and complementary therapies. The recommendation highlights that disability access co-ordinators appointed in both acute and primary centres would be able to provide referrals to the clinics and ensure that reasonable adjustments are made.

The report also highlighted that the provision of a neurologist during the transition from childhood to adulthood is an essential component of adult cerebral palsy care to ensure that, when a patient is discharged from their paediatrician, they do not face that cliff edge in support. Will the Minister agree to investigate how ICBs can undertake a gap analysis of existing cerebral palsy services for adults against current NICE guidance, and how they can include adults with cerebral palsy in their integrated needs assessments?

The report’s fifth recommendation suggests that, to ensure the provision of specialist services, the Department of Health and Social Care should provide ringfenced funding to ICBs to enable them to develop the much-needed specialist services at a local level. Will the Minister agree to look at ringfencing funding for the 42 ICBs so that they can develop specialist cerebral palsy services?

Finally, I want to demonstrate why national service specification is so needed. Emma Livingstone, the co-founder and chief executive officer of UP, The Adult Cerebral Palsy Movement, is in the Public Gallery, and her lived experience perfectly encapsulates why national service specification for adults with cerebral palsy is needed. Emma was diagnosed with cerebral palsy at two years old. At 16, she was discharged from medical services after being told that she was the best that she would ever be.

Unfortunately, without any integrated care during Emma’s adulthood, she experienced a significant decline in mobility in her late 30s. That led to Emma having multiple surgeries, and unfortunately having to give up her work as a speech and language therapist. In Emma’s own words,

“In my late thirties, my mobility declined rapidly. I needed hip surgery, then more surgeries, and eventually had to give up work. What shocked me wasn’t the physical deterioration—it was the silence. The coordinated care I’d received as a child simply vanished when I turned 18.”

Emma is sadly not alone in experiencing that. The APPG report found that

“the transition into adolescence and adulthood is often accompanied by a decline in physical function,”

with up to 50%

“of people with Cerebral Palsy experiencing deterioration in walking function between 20 and 40 years of age.”

That statistic alone is reason enough to show why national service specification for adult cerebral palsy in the NHS is so greatly needed.

I would welcome the Minister’s response to the five recommendations from the APPG report that I have highlighted today.