Action Cerebral Palsy Manifesto
Action Cerebral Palsy Manifesto
Manifesto 2024
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Cerebral palsy is the most common cause of physical disability in children, and yet it is a misunderstood and underrepresented condition. Too many children with cerebral palsy and their families have struggled for too long with a system which is inadequate, fractured and underfunded. We urge political leaders and policy makers to ensure these children and young people are able to access from birth onwards the very best possible intervention, care, education and support which meets their complex and changing needs.

To Read the Action Cerebral Palsy 2024 Manifesto and Explanatory Notes, please click below.

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Click here to download the Action Cerebral Palsy 2024 Manifesto.

Click here to download the Action Cerebral Palsy 2024 Manifesto Explanatory Notes.

How Political Leaders and Policy Makers Can Help Children and Young People with Cerebral Palsy?

  1. Implement best practice standards pathways of care from birth, via the proposed framework developed by the NHS England Children and Young People Transformation Programme Task and Finish Group on Cerebral Palsy. Click here to understand how this will help.
  2. Invest in recruitment and training to increase specialist knowledge of CP across health, education and social care workforces to promote early diagnosis, referral, intervention and support. Click here to understand how this will help.
  3. Fund dedicated lead professionals to act as advocate, co-ordinator and support from diagnosis to transition to adulthood. Click here to understand how this will help.

Action Cerebral Palsy calls on the next government to commit to policy change which will achieve better outcomes for all children with cerebral palsy and their families in the UK.

2024 Call To Action

Early identification, intervention and standard national pathways of care are vital to improve the life chances of these children.

Early intervention has a profoundly positive impact on the lifelong prospects of children with cerebral palsy, (Cerebral palsy–don’t delay, Sarah McIntyre et al. Review Dev Disabil Res Rev. 2011;17(2):114-29. D10.1002/ddrr.1106) and yet there are often unnecessary delays in the early identification and referral of infants, which in turn prevents effective early intervention taking place at the time when it can have the most impact due to early neuroplasticity. 

Up to 50% of all infants with cerebral palsy are not identified as being high risk for the condition at birth, and their needs are not addressed through any developmental surveillance scheme as they grow.  A key reason for these unnecessary delays is a lack of awareness of the early presenting features of cerebral palsy amongst primary healthcare professionals as well as parents and the general public.

Systems for surveillance are similarly not sufficiently robust. All children in England receive five mandated health visiting reviews currently. These are: antenatal, 10-14 days, 6-8 weeks, 9-12 months, and 2-2.5 years. These reviews play a crucial role in the early identification of children with atypical development patterns or impairments likely to result in disability. However, health visitors currently do not conduct a baby’s first developmental assessment until the 9–12-month review.

This means that there is no mechanism to routinely assess younger infants for developmental difficulties when they first begin to show these signs. Detection of cerebral palsy at nine months will often mean that valuable time for impactful intervention has been lost, which will impact that baby throughout its life. (APPG on Cerebral Palsy Report: Early identification, intervention and pathways of care of infants and young children with cerebral palsy: The case for reform and investment, March 2021)

Due to the complex nature of cerebral palsy which can involve numerous and interrelated health, sensory and developmental challenges, national standard of care pathways for cerebral palsy would provide a robust model for all disabilities.

To support Integrated Care Boards (ICBs) with improving care for children and young people with cerebral palsy, NHS England has developed a framework for ICBs that aims to simplify and summarise existing guidance available, enable systems to identify population need through data and highlight best practice that could be lifted and shifted into other systems. This framework should be used by Integrated Care Systems as a supportive tool to aid the commissioning of high-quality services for children aged 0-18 with Cerebral Palsy. (Integrated Care System framework: commissioning services for children and young people living with Cerebral Palsy 2024)

We call upon the next government to hold ICBs to account to implement the framework in full whilst providing the necessary resources for them to do so.

Action Cerebral Palsy is not alone in calling for investment in early intervention and investment in the children’s workforce. There have been numerous reports and research documenting the vital importance of infancy and early childhood on later outcomes and the evidence of return on investment for early intervention. There are serious shortfalls in the specialist workforce needed to provide intervention and support to children with cerebral palsy throughout their growing years.

Within healthcare, Health Visitors are a highly skilled workforce and are well-equipped to work in partnership with parents and communities to improve early identification and intervention for infants with cerebral palsy. Health Visitors play a crucial role in mitigating some of the known risk factors for cerebral palsy. However, there is a crisis in Health Visiting workforce in England. The 2023 State of Health Visiting, UK survey report reported an estimated shortage of 5,000 health visitors in England, a decline of more than 40% of the workforce since 2015. This means that there are not enough Health Visitors to meet the scale of rising need and to provide crucial support, surveillance and screening of “at risk” infants and their families. The APPG on cerebral palsy report concluded that “The Government must urgently invest in the health visiting workforce to increase its size and capacity and offer specialised training in the early signs of movement difficulties in infants, to ensure health visitors have the tools to identify signs of cerebral palsy as early as possible.” APPG on Cerebral Palsy Report: Early identification, intervention and pathways of care of infants and young children with cerebral palsy: The case for reform and investment, March 2021

Moreover, there needs to be an investment in the upskilling of these key first-line healthcare professionals to help promote earlier referral, diagnosis, intervention and support. “Non-specialist health professionals, such as: GPs, community paediatricians, health visitors and social workers must receive specific training on the early signs of cerebral palsy and associated neurodisabilities in infants.” – APPG on CP Report on Early identification, intervention and pathways of care of infants and children with cerebral palsy: The case for reform and investment, March 2021

An Action Cerebral Palsy Freedom of Information (FOI) survey in 2018 explored the awareness of the incidence of CP within statutory services and the availability of specialist health and educational professionals to support this cohort. Only 42 of the 189 NHS trusts contacted were able to access and provide data on the number of children and young people diagnosed with cerebral palsy in their area. Furthermore, just six out of 408 local authorities responded with a number of children and young people diagnosed with cerebral palsy in their local area. 145 other authorities responded to say that the information was not easily obtainable. The FOI survey found that trusts and local authorities were quick to point to provision of physical therapies – especially physiotherapy – rather than all the developmental therapies. Very few trusts (2) were able to provide the number of children referred to developmental clinics in their area, suggesting that these clinics simply do not exist, or that there is no overview to assess need and provision. The results of this FOI survey are concerning and of particular alarm is the lack of data on children with CP available within Healthcare Trusts and Local Authorities. Without this data, effective planning for workforce support and resources for this vulnerable group has led to poor services for too many children with cerebral palsy and their families.

Within education, the needs of children with physical disability, including cerebral palsy, are ignored within the SEND and AP Improvement Plan. Requiring the Practitioner Standards under development within the SEND and AP Improvement Plan to encompass the skills and expertise needed to meet the needs of the physical disability (including cerebral palsy) cohort of children is vital. These specialist skills must be available from all community paediatric teams and from specialist teachers for physical disability and not just from speech and language therapists and education psychologists as the current plan proposes. 

To enable this, schools, local authorities and families need to have access to expertise and specialists by increasing training and recruitment and by drawing on existing expertise in specialist schools and 3rd sector organisations, including those that provide early intervention services.

Numerous consultations have shown that families require better grassroots support from expert professionals who can empower them to ask questions and receive honest advice and support.

Parents giving evidence to the team preparing the NHSE Children and Young People Transformation Board Cerebral Palsy Integrated Care System framework: commissioning services for children and young people living with Cerebral Palsy, confirmed this. “I find it difficult to keep track of and navigate all the appointments”. The Framework states that ICBs should develop a coordinated care pathway enabled by Care Coordinators and Key Workers to support children and young people and their parents and carers to access the services in a coordinated manner.

The APPG on Cerebral Palsy reports also recommended lead professionals to support families. “When navigating the assessment and diagnostic process, each family should be assigned a “partner” within each child development team or from a specialist voluntary provider. This partner could be any qualified professional with knowledge of cerebral palsy who is able to provide monitoring, in-reach, information, and support to the family, and help them to refer to and co-ordinate services”. APPG on Cerebral Palsy: Early identification, intervention and pathways of care of infants and young children with cerebral palsy: The case for reform and investment, March 2021

“A neutral advocate, able to act on behalf of the family, and co-ordinate their EHCP plan and suggested services, would prevent costly tribunals down the line, as well as providing families with much-needed guidance and support. In addition, a single lead professional would ensure there is cohesion and continuation in a child’s EHCP and care. Every family with a child with cerebral palsy must be allocated a neutral lead professional, with knowledge and experience of cerebral palsy, to support and coordinate their EHCP and suggested services. This professional will be an advocate for the family and have the capacity to act on their behalf”. APPG on Cerebral Palsy Report: Best Practice in Education, Health and Care Plans (EHCPs), Teaching, and Learning for Children with Cerebral Palsy: The case for quality provision and standardisation, October 2021

In Action Cerebral Palsy’s own national online parent and carer survey conducted in summer 2021, when asked by Action Cerebral Palsy what parents felt had been the biggest obstacle to getting the appropriate education and therapy support for their child, 32% said “no independent advocate who is there to help”.

Moreover, as families and young people look ahead to the transition from childhood and children’s services into adulthood and adult services, families and young people with cerebral palsy have told the APPG of their fears of the ‘cliff-edge’ they face when the structures and systems of fulltime education come to an end. Parents who have effectively functioned as project managers for their child’s education, health and social care needs face the prospect of being excluded from joint decision making as their child reaches the age of 18. The result is they often watch in frustration as arrangements for their son or daughter fail to meet their diverse needs. Some parents have told us that they feel powerless to intervene to support their son or daughter who must now face challenges, choices and decisions far beyond those required of other young people of the same age. For many young people with complex needs but who have mental capacity, their 18th birthday is an arbitrary date on which their life and entitlements will radically change.

The ICS Framework for children and young people with cerebral palsy also acknowledges the cliff edge facing families at transition to adult services and recommends “To support continuity of care, it is also imperative that ICBs develop appropriate transition pathways from local and specialist teams to adult and lifespan services to support a coordinated transition to adult services.” (Integrated Care System framework: commissioning services for children and young people living with Cerebral Palsy 2024)

The role of the young person and their family must therefore be at the heart of timely pre-transition planning. They will know better than anyone what will need to be put in place and what the pitfalls will be. Their voice must be heard, respected and acted on so that potential difficulties can be pre-empted and solutions put in place.

“To remedy this, each child and young person with cerebral palsy and their family must have a dedicated lead professional to act as an advocate, co-ordinator and support from the point of diagnosis through to the completion of their transition to adulthood. In addition, young people with cerebral palsy and their families should be empowered to become self advocates for their conditions and life needs through their transition to adulthood with full oversight of a dedicated care plan that determines which services and support they need.” APPG Report: Growing up: the transition from childhood to adulthood, October 2022

  1. Sign up to our 3 point Action Cerebral Palsy Manifesto. Action Cerebral Palsy is the only UK charity actively campaigning specifically on behalf of children and young people with cerebral palsy and their families.
  2. Meet our Senior Team to discuss how to help your constituents affected by cerebral palsy by emailing our Chief Executive, Pilar Cloud at: pilar.cloud@actioncp.org
  3. Visit our website at actioncp.org/2024manifesto for full explanatory notes and research
  4. Share your support of our Manifesto via social media, tagging @action_cp with the hashtag #ACPManifesto24

Here is what families are telling us:

“I have to fight for everything. I have to ask and repeat and remind and cajole. The next mum will have to do the same. It’s awful having this burden on top of the time consuming, physical and emotional burden of caring.” APPG on Cerebral Palsy Report: Best Practice in Education, Health and Care Plans (EHCPs), Teaching, and Learning for Children with Cerebral Palsy: The case for quality provision and standardisation, October 2021

I feel alone and that no one is listening… Integrated Care System framework: commissioning services for children and young people living with Cerebral Palsy 2024

I know that good therapy is important but find it hard to access it so have had to pay for private care. Integrated Care System framework: commissioning services for children and young people living with Cerebral Palsy 2024

It is unclear what transition to adult services means for us. Integrated Care System framework: commissioning services for children and young people living with Cerebral Palsy 2024

Wilf dips his toes in water with his mother

A Parent's Story

“Cerebral palsy is a lifelong condition, there is no cure, and despite it being the most common physical disability in childhood there was little support in helping us as parents adjust to the new reality of our lives; a lifelong commitment as carers. That may now change thanks to the work and efforts of Action Cerebral Palsy; they are working hard to try to ensure that no more parents face the anxiety, loneliness and isolation that we have felt and that children and their families have the support and help that they need at every stage of their journey.”

– Helen Hunt, mother of Wilf

To share your story or get involved with our 2024 campaign, please email us at info@actioncp.org