We are pleased to announce the publication of the NICE guideline Cerebral palsy in adults (NG119) developed by the National Guideline Alliance (NGA).
Cerebral palsy in adults is a new guideline which follows on from the previously published NICE guideline on cerebral palsy in children and young people and is also related to the NICE guideline on spasticity for the age group of children and young people up to 19 years. Cerebral palsy is a lifelong condition and there is not yet a cure for the underlying brain disorder. The main aim of the guideline is to help and support health and social care professionals and people with cerebral palsy (particularly related to their changing needs with age) in making shared decisions about the clinical and social care that is on offer.
The guideline makes specific recommendations about regular clinical reviews of people with cerebral palsy. New interventions are coming into routine clinical practice for the management of premature babies and babies who are at high risk of developing cerebral palsy at birth. These interventions 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. This is why as they become young adults and transfer into adult services adults with cerebral palsy will continue to need regular monitoring of their health and wellbeing and regular reviews are likely to lead to earlier identification and treatment of complications and comorbidities.
Barriers to accessing services that people with cerebral palsy may experience and how they could be addressed is also described in the guidance. 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 may have spasticity and dystonia (both of these are forms of abnormal muscle tone). The severity of symptoms for both conditions may fluctuate in response to health, social and emotional wellbeing, and environmental factors. They cause pain and impact on quality of life. How spasticity and dystonia can be treated and managed is also covered in the guideline.
There tends to be less fluctuation in motor skills in adults with cerebral palsy than in 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 and the identification and monitoring of these is highlighted in the guideline.
The guideline takes into account equality issues because people with cerebral palsy have protected status under the Equality Act (2010) and the UN Convention on the Rights of Persons with Disabilities. Recommendations reinforce this legislation and are designed to advance equality.
"Cerebral palsy in adults" [NG119] is available on the NICE website from 15 January 2019.