The Cerebral Palsy Charter – World CP Day 2024

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RECOGNISING CEREBRAL PALSY AS A LIFELONG CONDITION AND THEREFORE …

• Enabling access to the framework used by GPs to identify individuals with long term conditions, and offering annual medical reviews.
• Implementing systematic reviews leading to specialist neuro rehabilitation pathways for health interventions and for accessing and staying in work.
• ⁠Funding dedicated key professionals to advocate, coordinate and support individuals with CP to live and age well.
• ⁠Investing in recruitment and training to increase specialist knowledge of Cerebral Palsy across health and social care.

SUMMARY

1      Studies show that many individuals with a childhood-onset disability (COD) such as cerebral palsy may experience near-normal life expectancies; however, healthcare coordination, clinical interventions, and research efforts remain largely focused on children with these conditions.

2      For many individuals living with cerebral palsy, adult life comes with challenges in housing, employment, relationships, family life, and overall participation1. The ability to participate in society without restrictions and a sense of belonging is rated as an important aspect of “meanings of citizenship”2. This requires access to person-centred rehabilitation, social services and in many cases access to personal assistance3.

3      Current services for people of all ages with cerebral palsy in the UK fall short of the NICE guidelines. Coordinated care and services for children and young people are stretched or inadequate, and these stop on transition to adulthood. Indeed, the UK’s 130,000 adults with cerebral palsy are invisible to the NHS.

4      In March 2022, a report from the All-Party Parliamentary Group (APPG) on Cerebral Palsy, co-sponsored by this charity, set out the minimum requirements for proper coordinated healthcare for adults with cerebral palsy.

It called for NHS England, social care, education, and employment specialists to agree a national service specification for adult cerebral palsy to be used to commission dedicated specialist services based on the needs of local populations within the 42 new Integrated Care Board (ICB) areas.

None of the report’s recommendations have been implemented, leaving care for anyone with cerebral palsy falling off a cliff when they turn 18.

5      A health economics study commissioned by this charity calculated the cost of the package needed to provide proper healthcare support for adults with cerebral palsy would be approximately £20m per annum, equivalent to 42p per day for each of the UK’s 130,000 adults with cerebral palsy.

6      We are calling on the Government to recognise cerebral palsy as a lifelong condition. We are also asking the Government to pledge to ensure all adults with cerebral palsy will get enhanced health and social care support, including an annual medical review.

Join the Campaign

Join us in this campaign to move CP up the political agenda. You can play your part in the campaign in one or more of the following ways:

• Write to your MP. You can download this model letter/email, which you can then change to make it more personal to you.
• Sign the Charter here.