World Cerebral Palsy Day: Ground-breaking report gives voice to young people with CP

Children and teenagers with cerebral palsy (CP) are being systematically let down by authorities as they seek to transition to life as an independent adult. MPs and campaigners have gathered testimonies from young people with CP from across the UK.

Growing Up: The transition from childhood to adulthood is a new report that lays out the reality of life with CP for young people in the UK.  It includes a series of recommendations for the government to adopt in order to make life easier for the 30,000 children with CP.

The report’s most striking feature is the personal stories it includes. The results and suggestions were influenced by dozens of written responses from people with cerebral palsy, academics, and charities, all of whom describe the immense difficulties they or others encounter daily.

Sarah Cooper, an adult living with cerebral palsy, said: ‘I have learnt through grit and determination to exist and thrive in the able-bodied world.’

Hazel Irving, a person living with cerebral palsy, explained how she must choose between financial independence or pursuing a normal teenage life that includes socialising with her friends. She said: ‘My story is not unique. We all lost funding at a similar age and have since become more dependent on aids.  We have all lost a lot of freedom. Either [we] work, and then have no energy for a personal life, or don’t work and have a bit more strength to socialise.’

The All Party Parliamentary Group for Cerebral Palsy and charities Action Cerebral Palsy & Caudwell Children have produced a 10 point plan to help youngsters with CP transition to adulthood:

    1. The next King’s Speech should include an AEERT Bill to offer education, employment, and training prospects to persons with cerebral palsy and other lifelong, chronic, fluctuating conditions.
    2. Every young person with cerebral palsy requires a “roadmap” to adulthood that includes their education, health, and care requirements.
    3. Each child and teen with cerebral palsy and their family must have a lead care provider from diagnosis through to adulthood.
    4. 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.
    5. Each integrated care system must empower young people with cerebral palsy by developing dedicated budgets to access essential resources and services.
    6. Every integrated care system in England should build regional cerebral palsy centres with multi-disciplinary teams.
    7. Local SEND partnerships need cerebral palsy expertise.
    8. The government should invest in high-quality healthcare, treatment, and education to unlock the potential of young persons with cerebral palsy.
    9. All UK countries should have specific care paths for young individuals with cerebral palsy and adult services.
    10. The Cerebral Palsy Integrated Pathway (CPIP) must be expanded to develop registers throughout the UK.

 

To mark the publication of the report on World Cerebral Palsy Day, APPG Co-Chair Paul Maynard MP (Con, Blackpool North) will seek a debate in the House of Commons to formally recognise the report in Parliament, and APPG Co-Chair Mary Foy MP (Lab, City of Durham) will introduce an Early Day Motion to encourage Parliamentarians to register their support for the report.

 

Download the Report

Read the full report and reccomendations for Government
Four people standing by an Action Cerebral Palsy banner looking at the camera smiling

“In the 22 years since I founded Caudwell Children I’ve been fortunate enough to meet hundreds of children living with cerebral palsy and watched many of them as they have grown up and become young adults. In doing so I have also met lots of parents and carers who have all too often expressed the difficulties they have faced in securing the appropriate support and assistance for their child. It was always my ambition for the charity to lessen some of the burdens of families caring for a child with a disability by plugging the gaps left by statutory services and other charities. By successfully removing some of the barriers children and young people with cerebral palsy face in early childhood we raise aspirations and provide the platform from which they can pursue their ambitions for independence, further education and employment. Sadly, the positive life experiences of early adulthood we wished for the young people the charity supported is too frequently not the reality. Upon leaving caring and nurturing environments like Caudwell Children, school or home, they find the harsh reality is a world which neither understands or acts like it cares about the immediate or longer term needs of anyone with a complex disability like cerebral palsy. We want to change the experiences for young people transitioning into adulthood in the future and believe the considered recommendations within this excellent report give Government a practical and achievable roadmap for change.”

John Caudwell, Founder & Chairman Emeritus, Caudwell Children Tweet

“Action Cerebral Palsy is delighted to have co-sponsored with Caudwell Children, the APPG on Cerebral Palsy work on Transition to Adulthood. We know first-hand how the aspirations, life chances, health and wellbeing of young people with cerebral palsy depend on the quality of planning, pathways and provision of expert support during these vital years. “Too often, as this and earlier APPG reports identify, young people with cerebral palsy and their families are let down, sometimes from a very early age, by systems which are inadequate, uninformed and underfunded. We hope that the recommendations within this excellent report will lead to lasting improvements in the support available for these young people as they begin their adult life and enable them to lead their best lives.”