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To: Simon Stevens, Chief Executive, NHS England
Better care for adults with Cerebral Palsy
I want NHS England to:
1. Fund specialised medical pathways specific to adults with Cerebral Palsy that are common throughout the country.
2. Extend the knowledge base of Cerebral Palsy in adults through funding research.
3. Create a national register of patients with Cerebral Palsy, as is common in other countries, to monitor the number and needs of people with Cerebral Palsy to inform service planning and research.
1. Fund specialised medical pathways specific to adults with Cerebral Palsy that are common throughout the country.
2. Extend the knowledge base of Cerebral Palsy in adults through funding research.
3. Create a national register of patients with Cerebral Palsy, as is common in other countries, to monitor the number and needs of people with Cerebral Palsy to inform service planning and research.
Why is this important?
Adults with Cerebral Palsy (CP) are failed in the UK by lack of dedicated and co-ordinated medical provision. The lack of recognition and knowledge of the degenerative impact of CP results in adults not benefiting from the timely monitoring, maintenance and intervention required to enable them to fulfil their full life potential.
I am a 41 year old mother of 3 who has CP and until recently was living a full and active life working as a Speech and Language Therapist. I underwent major hip surgery in September 2015 to try to slow down the progress of the arthritis in my hips caused by the degenerative impact of the strain put on my body by CP. I am now unable to work and use crutches to aid my mobility.
I have become increasingly frustrated at the lack of knowledge and services available for adults with Cerebral Palsy and I know my experiences are not unique.
Adults with CP face unique challenges that often require specialised care e.g. pain management, mobility problems, and aging-related conditions such as osteoarthritis and osteoporosis. Yet, co-ordinated services stop on transition to adulthood.
The key barriers for successful healthcare are
• The lack of young adult services and no obvious transition pathway from paediatric to adult services.
• No best practice guidance on the treatment and management of adults with CP
• Lack of knowledge and understanding of long term impact of living with CP
The impact of these failings is unnecessary pain, reduced quality of life and avoidable medical problems for sufferers, whilst decreasing their ability to participate in the workforce. This is also leading to increased cost and strain on already stretched health and social care services.
We are too big a population to ignore
• 111,000 people have CP in the UK (similar population to MS and Parkinson’s)
• The current UK incidence rate is around 1 in 400 births (making it three times more common than Down syndrome and nearly 30 times more common than muscular dystrophy)
• Approximately 1,800 children are diagnosed with cerebral palsy every year
• There are an estimated 30,000 children with cerebral palsy in the UK who will all require support as they transition into adulthood.
• Research indicates that most will have a similar life expectancy to non-disabled people
The costs of Cerebral Palsy
• Care Commissioning Groups, Local Authorities and Trusts struggle to provide any information as to the number of children diagnosed with CP, the service and care pathways available to them or the total cost of cerebral palsy care (2016 study by Action Cerebral Palsy)
• The lifetime costs for children born in 2016 with cerebral palsy is estimated to total £2bn. This is based on international benchmarks, with 20% related to medical costs and 80% to indirect factors such as reduced employment opportunities and premature mortality
• Over 20% of CP sufferers will experience a decline in mobility by the time they reach 40
I am a 41 year old mother of 3 who has CP and until recently was living a full and active life working as a Speech and Language Therapist. I underwent major hip surgery in September 2015 to try to slow down the progress of the arthritis in my hips caused by the degenerative impact of the strain put on my body by CP. I am now unable to work and use crutches to aid my mobility.
I have become increasingly frustrated at the lack of knowledge and services available for adults with Cerebral Palsy and I know my experiences are not unique.
Adults with CP face unique challenges that often require specialised care e.g. pain management, mobility problems, and aging-related conditions such as osteoarthritis and osteoporosis. Yet, co-ordinated services stop on transition to adulthood.
The key barriers for successful healthcare are
• The lack of young adult services and no obvious transition pathway from paediatric to adult services.
• No best practice guidance on the treatment and management of adults with CP
• Lack of knowledge and understanding of long term impact of living with CP
The impact of these failings is unnecessary pain, reduced quality of life and avoidable medical problems for sufferers, whilst decreasing their ability to participate in the workforce. This is also leading to increased cost and strain on already stretched health and social care services.
We are too big a population to ignore
• 111,000 people have CP in the UK (similar population to MS and Parkinson’s)
• The current UK incidence rate is around 1 in 400 births (making it three times more common than Down syndrome and nearly 30 times more common than muscular dystrophy)
• Approximately 1,800 children are diagnosed with cerebral palsy every year
• There are an estimated 30,000 children with cerebral palsy in the UK who will all require support as they transition into adulthood.
• Research indicates that most will have a similar life expectancy to non-disabled people
The costs of Cerebral Palsy
• Care Commissioning Groups, Local Authorities and Trusts struggle to provide any information as to the number of children diagnosed with CP, the service and care pathways available to them or the total cost of cerebral palsy care (2016 study by Action Cerebral Palsy)
• The lifetime costs for children born in 2016 with cerebral palsy is estimated to total £2bn. This is based on international benchmarks, with 20% related to medical costs and 80% to indirect factors such as reduced employment opportunities and premature mortality
• Over 20% of CP sufferers will experience a decline in mobility by the time they reach 40
