Cerebral palsy in adults

Context

Cerebral palsy is a disorder of motor development caused by a non-progressive pathology that affects the developing brain. People with cerebral palsy may also have disorders of communication, learning, feeding and vision, and epilepsy. Cerebral palsy is a lifelong condition and there is not yet a cure for the underlying brain disorder.

There are now more adults living with cerebral palsy than there are children with cerebral palsy. Adults with cerebral palsy have a wide range of abilities – from full independence in everyday life to needing 24‑hour care and attention.

New interventions are coming into routine clinical practice for the management of premature babies and babies in a poor condition at birth who are at high risk of developing cerebral palsy. These may change the pattern of cerebral palsy and its related comorbidities. With improved survival, more children with severe and complex cerebral palsy are likely to live beyond childhood and into adult life. As they become young adults and transfer into adult services, this group will continue to need regular monitoring of their health and wellbeing.

Adults with cerebral palsy should be able to become as functionally independent as possible. Many may wish to go into further education, gain employment, participate in leisure activities and contribute fully to society. Barriers to these goals should be minimised so that adults with cerebral palsy have equal access to all opportunities.

Adults with cerebral palsy tend to have less fluctuation in their motor skills than children. However, their mobility may decrease because of factors such as muscle tone, weakness and pain. Comorbid symptoms, such as pain, mental health problems, communication difficulties and nutritional problems can, individually and in combination, affect participation and quality of life. These should also be a high priority for management.

As adults with cerebral palsy who have ongoing care needs grow older, there may be changes in their care arrangements. It may not be possible for their parents to continue to be the main carers and other support may be needed, either in the community or a residential setting. There is always the need for ongoing training and support for those who are caring for adults with cerebral palsy.

Adults with cerebral palsy and associated comorbidities may have difficulties with all aspects of health and daily living. However, this guideline has not been able to look at the evidence and develop recommendations for all areas of care. Areas that are not covered include bowel and bladder continence, sexual health and dental health. The principles of access to services, providing information and appropriate referral, discussed in the guideline, apply not only to areas directly addressed but also equally to other areas of care.

The care and support needs of adults with cerebral palsy depend on the severity of impairment and the presence or absence of comorbidities. There is significant variation in how services are currently provided to meet these needs. However, there is not a single system appropriate for all adults with cerebral palsy. In line with the Equality Act 2010 and the United Nations (UN) Convention on the rights of persons with disabilities, this guideline aims to ensure that adults with cerebral palsy have easy access to equitable, cost-efficient services, with a clear network of referral to more specialised services as appropriate.