Guidelines
Cerebral Palsy in adults: the care you should expect. These guidelines make a difference to our expectations about the support and services adults with cerebral palsy and their families should be receiving.
This quality standard covers care and support for adults with cerebral palsy (aged 25 and over). It describes high-quality care in priority areas for improvement.
NICE quality standards describe high-priority areas for quality improvement in a defined care or service area. Each standard consists of a prioritised set of specific, concise and measurable statements. NICE quality standards draw on existing NICE or NICE-accredited guidance that provides an underpinning, comprehensive set of recommendations, and are designed to support the measurement of improvement.
Quality statements
Statement 1 Adults with cerebral palsy are referred to a specialist multidisciplinary team if their ability to carry out usual daily activities deteriorates or is expected to deteriorate.
Statement 2 Adults with cerebral palsy who have complex needs have an annual review with a healthcare professional with expertise in neurodisabilities.
Statement 3 Adults with cerebral palsy who want support to live independently are referred to a professional with expertise in independent living.
Statement 4 Adults with cerebral palsy who want support to work are referred to a professional with expertise in vocational skills and independent living.
Statement 5 Adults with cerebral palsy who have communication difficulties have their need for intervention assessed by speech and language therapy services.
- These guideline, published in January 2019, cover care and support for adults with cerebral palsy. They aim to improve health and wellbeing, promote access to services and support participation and independent living.
- As an adult with Cerebral Palsy, the Guidelines state you should expect that:
- Your care and support always fits your needs and the things you want to achieve
- You’re offered regular check-ups with your care team
- You know how to get more help when you want it, or if your needs change a good range of specialist
support is available locally to provide your care.
- These guideline, published in January 2019, cover care and support for adults with cerebral palsy. They aim to improve health and wellbeing, promote access to services and support participation and independent living.
- We recognise this to be a milestone in the campaign to improve the lives of adults living with Cerebral Palsy in the
United Kingdom. - Key recommendations
- The call to commissioners to develop local networks of support
- The need for multi-professional involvement to provide optimum care
- The recognition that the needs of adults with Cerebral Palsy can change over time, necessitating regular
reviews where appropriate - A recognition that there needs to be clear, supported transition between children and adult services
- Recommendations that a key person should be identified at initial consultation and clear channels of
communication sign-posted making it easier to access support when required - An importance given to physical activity for adults with Cerebral Palsy in maintaining their level of
physical fitness, and mental wellbeing
- This document released by NHS England in 2019 advocates improvements which would greatly benefit the adult
Cerebral Palsy community. Click here to view full guides. - Key recommendations:
- More joined-up and coordinated care Breaking down traditional barriers between care institutions, teams and funding streamsSupporting people with long-term health conditions and connecting ‘episodes’ of care
- More proactive service provision
- Population health management Using predictive prevention to better support people to stay healthy and avoid illness complications
- Differentiated support to individuals Providing the right support so people of all ages can take control of how they manage their physical & mental wellbeingMove away from one-size-fits-all statutory services
- Delivery of care by flexible teams working across primary care & local hospitals Developing services to meet local needs, including GPs, allied health professionals (AHPs), district nurses, mental health nurses, therapists and reablement teamsExtra recovery, reablement and rehabilitation support to support people with the highest needs
- Better care for major health conditions
- Research and innovation to drive future outcomes improvement
For younger members of our community and those about to be transitioning into adult services, these guidelines are relevant
- This information explains the care that NICE has said works best for children and young people under 25 who have
cerebral palsy. It will help you know what to expect from health and care services. - This information is written for parents and carers, but older children and young people with cerebral palsy may also
want to read it. There is a section for young people on the support they should get when they are moving to adults’
services. - These guidelines also cover moving to adults’ services: information for young people with cerebral palsy.