NEW NICE GUIDANCE PUBLISHED - CP in Adults

Adults with CP NICE Guidelines: Review for APCP

Published in January of 2019, the NICE guidelines for adults in CP provide guidance to

• Healthcare professionals in primary and secondary care
• Social care practitioners and professionals from other sectors, such as non-governmental, education and voluntary organisations
• People responsible for planning services, commissioners and providers
• Adults with cerebral palsy, their families and carers

Covers broad ranging topics and has been separated into four different areas

• Access to services and on going review
• Support with communication, vocational skills, independent living and electronic assistive technology
• Managing spasticity and dystonia
• Assessing and managing bone and joint disorders, mental health problems, difficulties with eating and nutrition, respiratory disorders and pain

Important points raised:

• Acesss to services should be available at different times in their lives when circumstances change.
• Aceess to a specialised multidisciplinary team is vital with  professionals encouraged to be Advocates and provide and care needs assessment.
• Development of pathways of care in local services required (mental health, rehabilitation, orthopaedics, advocacy, rehab engineering, learning disability support, specialist services – therapies)
• Improving access: physical and services.
• Yearly review for those
  • GMFCS level IV and V
  • Communication difficulties
  • Learning disabilities
  • Living in long-term care settings
  • Living in the community without sufficient practical and social Support (for example, being cared for by elderly, frail parents)
  • Multiple comorbidities
• Tone Management options discussed
• Awareness of and openness to discuss possible changes/ deterioration in the MS system (including bone health and joint deterioration, mental health, diet and nutrition, respiratory disorders, and pain). Understanding growing old with a childhood condition.
• Advice on management health and physical wellbeing for adults with cp.

There is a role for the paediatric specialists in neurodisability to guide development of services for adults with CP. The pathways of care need to be refined and there is a need for coordination between health, social and education services. The paediatric pathways could be adapted for the needs of an adult population and much can be learnt from the life long care services of people with spinal cord injury and the pathways of care for people with multiple sclerosis and stroke injuries.

The therapies have an important roles in educating healthcare professionals and other providers working with adults with CP, in the education of adults with CP about learning to grow old, and innovative service development.

You can see the full NICE Guidance here