Adults Living with Cerebral Palsy

Susan Pattison recently attended the Physiotherapy UK Conference (2019) and this years theme was “Managing Complexity”. There was a number of sessions on Adult Cerebral Palsy (CP). Of particular interest was some preliminary data from RADICAL Research and Brunnel University who have been surveying whether physio services are meeting the needs of adults living with CP.

Most children with cerebral palsy have access to physiotherapy to support their growth and development during child hood. However 2 thirds of people living with CP are adults. Preliminary findings from a survey of adults living with CP found the transition to adult services often meant they were discharged and felt “left and abandoned”.

Although CP is consider to be non-progressive, participants in the survey reported deterioration in their physical abilities with age & difficulty in accessing physiotherapy services that understood their needs. 103 of the 114 respondents had accessed physio in the past 12 months, but sadly only 33 considered they had received the physio they needed.

80% of the respondents reported they had fallen in the past 12 months, with 22% of these falling 15 times or more. Interestingly when asked the reasons why they had sought help from a physiotherapist not one person identified falls as a reason.

The question and answer session that followed, concluded that NHS physio services identifying themselves as either children or adult was not helpful, and children and adult teams needed to share experience and knowledge to enable adult physiotherapists to have the confidence and experience to be able adults with CP to access services and support.

Inspiring personal stories from a Paralympic athlete Zen Zhou and a self-confessed mad man Max Stainton who rode a pony to the Base Camp of Everest, illustrated what adults living with CP could achieve with the support of physiotherapy.