Adult Cerebral Palsy: National Service Specification
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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.