NICE has published new guidance on the care and support needs of adults with cerebral palsy and aims to tackle the variation that exists in the provision of specific services for adults with cerebral palsy.
Cerebral palsy is a life-long physical disability acquired in childhood. Everyone with cerebral palsy is affected differently – symptoms vary widely and the effects can range from minor problems to severe disability. Most people with cerebral palsy live well into adulthood and many have independent and active lives. Although the brain injury that causes cerebral palsy does not get worse over time, its effects on the body change, so people often need different care and support as they grow older.
Adults with cerebral palsy, in line with the general population, are living longer, but are more likely to acquire impairments and illnesses associated with later life.
They can have a decrease in their mobility because of factors such as worsening muscle tone, weakness and pain. These, as well as other symptoms associated with cerebral palsy such as pain, communication difficulties and nutritional problems, are also a high priority for management and are therefore covered in the guideline, as are mental health problems that may arise as a consequence of cerebral palsy.
The guideline aims to help local and regional services provide consistent, clear pathways of clinical and social care. It recommends that:
- Commissioners and service providers should develop pathways that allow adults with cerebral palsy access to a local network of care (for example learning disability and mental health services, rehabilitation medicine or specialist neurology services, specialist physiotherapy and occupational therapy services, wheelchair services).
- Factors that prevent adults with cerebral palsy accessing primary or secondary care services, or participating in activities (for example, physical barriers, including access to buildings, and personal barriers such as carers with unmet training needs) should be identified and addressed.
- Regular reviews for adults with cerebral palsy, tailored to their needs and preferences should be considered. The frequency of review and which services should be involved should be agreed with the person, based on their needs and preferences.
- Adults with cerebral palsy who would like to like to live independently should be referred to a professional with expertise in independent living for advice on, among other things, what adaptions to their home need to be considered.
There are now more adults in the UK living with cerebral palsy than the estimated 30,000 children.
Paul Chrisp, director of the Centre for Guidelines at NICE, said: “Adults with cerebral palsy have a wide range of disabilities – from full independence to needing 24-hour care and attention. But whatever their level of disability, adults with cerebral palsy should be able to be as independent as possible. Many may wish to go into further education, get a job, take part 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 every available opportunity.
“This guideline will help 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.”