Policy piece

24th July 2018 • Emma Cooper

The National Institute for Health and Care Excellence (NICE) has published a draft clinical guideline on the care and support of adults with cerebral palsy.

The draft guideline, which is open for public consultation until 28th August, outlines the steps needed to address the variation across the UK in commissioning and provision of specific services for adults with cerebral palsy. The aim of the guideline is to help local and regional services to provide consistent clear pathways of clinical and social care.

Recommendations in the draft guideline include:

  • Specialist services 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).
  • Recognise and address barriers to accessing primary and secondary care for adults with cerebral palsy (these may include physical access to buildings, difficulties with transport, inadequate time given in appointments to allow, for example, hoisting and dressing, and communication challenges).
  • Provide information about national screening services (for example breast, colon and cervical cancer screening) to adults with cerebral palsy.
  • Consider regular reviews for adults with cerebral palsy, tailored to their needs and preferences. Agree with the person the frequency of review and which services should be involved based on their needs and preferences.

A permanent, non-progressive abnormality of the brain, cerebral palsy is the most common cause of physical disability in children and young people in the developed world. In the UK it is estimated that 1 in 400 babies is born with cerebral palsy, with approximately 1,800 children diagnosed each year.

Improved treatments have seen increasing life expectancy for people with cerebral palsy, including more children with severe and complex cerebral palsy who are likely to live beyond childhood and into adult life. There are now more adults in the UK living with cerebral palsy than the estimated 30,000 children with the condition.

Professor Mark Baker, director of the centre for guidelines at NICE, said: ‘Adults with cerebral palsy have a wide range of abilities – from full independence in everyday life to needing 24-hour care and attention. But irrespective of their level of disability, adults with cerebral palsy should be able to be 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.
‘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.’

Adults with cerebral palsy tend to have less fluctuation in their movement and coordination skills than children. However, their mobility may decrease because of factors such as muscle tone, weakness and pain. These, together with other symptoms associated with cerebral palsy such as pain, mental health problems, communication difficulties and nutritional problems, can affect participation and quality of life. These should also be a high priority for management and are therefore covered in the draft guideline.

The NICE guideline on cerebral palsy in children and young people aged under 25 published last year aims to help improve the diagnosis and management of cerebral palsy and reduce variation in clinical practice across the country. Because the problems this population faces continue into adulthood, the draft recommendations in this new guideline on interventions for adults with cerebral palsy – for example the use of augmentative and alternative communications systems to help improve communications skills – largely reflect those for children and young people.

You can read more about the draft guidance here.