Adult Cerebral Palsy: National Service Specification

Tuesday 10th March 2026 Westminster Hall

10:57

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

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.

[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.

11:10

[The Minister for Care (Stephen Kinnock)]

It is a real pleasure to serve under your chairship, Ms Jardine.

I thank my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) for securing this important debate. Many Members in this House speak on issues of importance to their constituents; far fewer bring the depth of personal experience, the understanding and the long-term perspective that he has of this issue. His own experiences of caring for a child with cerebral palsy reflect the realities faced every day by parents and carers across the country, and he speaks with such compassion and authority.

Adults with cerebral palsy make up a significant but often overlooked part of our population—around 130,000 people across the UK. For far too long, they have been “invisible to the NHS”, in the words of the cerebral palsy charter. Although cerebral palsy is a lifelong neurological condition, we frequently see well-structured, multidisciplinary paediatric care systems simply evaporating when people reach the age of 18. Adults are left navigating a fragmented system with no clear pathways, limited specialist input and inconsistent recognition of their needs.

We know that adults with cerebral palsy face disproportionately high risks of chronic pain, fatigue, mobility loss, falls, respiratory illness and cardiovascular disease—harms that are preventable with co-ordinated, proactive care. Young adults who have both cerebral palsy and a learning disability often receive better support, because they can access well-established learning disability pathways that provide structured reviews, specialist teams and co-ordinated care. By contrast, young adults with cerebral palsy alone often fall outside those pathways, and therefore struggle to access the same level of timely, proactive support, despite having significant and lifelong needs.

On the point that my hon. Friend the Member for Bexleyheath and Crayford made about ringfenced funding, we expect ICBs to commission services for people with cerebral palsy based on local population need, and informed by NICE guidance and national service specifications. That approach is consistent with the wider NHS financial framework, which does not create condition-specific funding pots, but rather supports local systems to make evidence-based decisions across all long-term conditions. Similarly, on extending the qualities and outcomes framework, or QOF, to incorporate the creation of general practice-level cerebral palsy registers, we are operating in a very challenging fiscal environment. QOF indicators must be evidence based, deliverable at a national scale and balanced against the need to reduce administrative pressures on general practice.

Current policy is that ICBs should use NICE guidance and national service specifications to commission appropriate local services, rather than creating condition-specific national incentives. Although we have no plans at present to commission any formal gap analysis of adherence to, or non-compliance with, NICE guidelines, I wish to remind all ICBs of their responsibilities and the importance of adhering to those guidelines.

NHS England’s revised service specification for adult specialised neurology services, which was published in August last year and comes into effect next month, represents an important step forward in improving care for adults with cerebral palsy. For the first time, it sets clear expectations for how people with lifelong neurological conditions, including cerebral palsy, should move between general practice, community services and specialist centres.

The specification requires integrated care boards and specialist centres to organise services using a population health approach, ensuring equitable access to both general and specialist neurology services and oversight from multidisciplinary teams. That means better communication between GPs and specialist services, clearer and more consistent referral pathways and stronger recognition that cerebral palsy is a lifelong condition that requires timely review and escalation when needs change.

On cerebral palsy specifically, the service specification mandates a networked, multidisciplinary model for adult cerebral palsy care, emphasising integrated care pathways, structured transition from ages 13 to 14 and annual reviews for complex needs. It ensures equitable access to specialists, specialised treatments such as botulinum toxin and requires services to address physical and communicative barriers to care. Those changes will directly support early intervention, reduce unwarranted variation between local systems and help to embed more proactive, joined-up primary and specialist care, improving outcomes, continuity and quality of life for adults with cerebral palsy.

The updated neurology service specification ensures that cerebral palsy is embedded within a broader national framework, strengthening national expectations for adult cerebral palsy care. One of the most important ways we are strengthening support for adults with cerebral palsy is by improving awareness and understanding within primary care. The service specification now requires integrated care boards and specialist centres to work much more closely with GPs, strengthening communication and clarifying referral pathways so that primary care clinicians understand when an adult with cerebral palsy requires specialist review or escalation.

That is crucial, because too many adults report difficulty in securing informed support in general practice or face long delays in being referred to clinicians with expertise in neuro-disability. Those new expectations are designed to ensure that GPs have the confidence and the clarity they need to identify emerging concerns, initiate timely investigations and support adults whose needs may change as they age.

Importantly, the specification also strengthens national recognition of cerebral palsy as a lifelong condition, helping to embed more consistent, informed support for adults across primary care settings. That includes the requirement for services to identify barriers to access and make reasonable adjustments for disabled people. That is an important safeguard for adults with cerebral palsy, many of whom experience pain, fatigue, visual perceptual changes, challenges or communication needs that can affect their interaction with health services. These reforms ensure that GPs are supported by a clearer national framework, better referral pathways and stronger system expectations.

As we have heard from my hon. Friend the Member for Bexleyheath and Crayford today, too many adults with cerebral palsy feel that their support drops away as they transition out of paediatric services. That is exactly why the reforms we are delivering through our 10-year health plan are so critical to strengthening the support available for people with cerebral palsy throughout their lives.

Our 10-year health plan sets out a vision for a health and care system that is more personalised, more integrated and more proactive for people with long-term and complex conditions, including cerebral palsy. That means moving away from reactive care based on crisis points towards lifelong support that anticipates needs, prevents deterioration and joins up specialist community and primary care services. The plan focuses on delivering more care in the community, making greater use of technology and building a more preventive health service that supports people to stay well for longer.

Our 10-year health plan will ensure that people with complex needs are supported to be active participants in their own care. As part of that, 95% of people with complex needs or long-term conditions will have an agreed personalised care plan by 2027. Care plans will be a feature of the developing neighbourhood health service, which will deliver more care in local communities and move away from a one-size-fits-all approach, giving people more power and choice over the care that they receive.

Work is under way to determine the definition of complex needs in the context of that target and how care plans will be delivered in the future, including who will be best placed to co-ordinate and support their delivery. We know that key shared decision making is central to patients’ ongoing care, and care plans will look to promote that further. In developing future models of care planning, we will continue to take into account the varied experiences and needs of people with different conditions, such as cerebral palsy.

We also recognise the importance of preventive, proactive care, including annual reviews, as recommended in NICE guidance for adults with cerebral palsy. Although not currently mandated through the quality and outcomes framework, those reviews remain an important mechanism for identifying changes in mobility, pain, fatigue and mental health, and for ensuring that people are offered appropriate interventions early. The 10-year health plan’s focus on personalised and proactive care will support integrated care boards to improve access to those reviews as part of a more consistent offer for adults with cerebral palsy.

The plan will also ensure that no young person is lost in the gaps between children’s and adult services, a point at which many families tell us that they feel most vulnerable. NHS England’s children and young people transformation programme provides a clear nought-to-25 model of care to achieve that. For young people with cerebral palsy, that means earlier preparation for transition, co-ordinated support from a multidisciplinary network and clearer expectations for how professionals should plan and hand over care.

No young adult with cerebral palsy should reach their 18th birthday and face a cliff edge. They have waited far too long for the NHS to acknowledge their existence in policy, planning and commissioning. They deserve the dignity of services that reflect the reality of their lifelong condition. They deserve the best, and we are delivering improvements through integrated, system-wide reforms designed to support lifelong person-centred care.

The steps under way provide a more effective and sustainable foundation for improving outcomes for adults with cerebral palsy. Again, I thank and congratulate my hon. Friend the Member for Bexleyheath and Crayford for his tireless advocacy and work to ensure that this issue receives the attention that it deserves. I congratulate him, once again, on securing this important debate.

Question put and agreed to.

11:22

Sitting suspended.