WORLD CEREBRAL PALSY DAY: New video by adults with cerebral palsy shows how physio barriers can be overcome

The video was scripted and voiced by adults with cerebral palsy (CP) in partnership with researchers they had spoken to about their personal experiences of how well physiotherapy and physiotherapy services meet their needs.

These interviews, and the production of the video, took place as part of a study led by Brunel University London, of which the findings offer insights to physiotherapists, policy makers and healthcare organisations who have the potential to shape future service development.

Cerebral palsy is a condition affecting about 1 in every 400 children in the UK, and can affect their movement, coordination and development, to varying degrees from mild to severe impairment. Improvements to life expectancy mean that there are now an estimated three times as many adults with CP as there are children.

These adults can have weakness, fatigue, muscle stiffness, and pain in their muscles and joints, which may worsen with age – and they are more likely than other adults to experience diabetes, stroke and chronic respiratory conditions.

"Despite this great need for physiotherapy services for adults with CP, the services in the UK appear somewhat chaotic,"said Gemma Cook, the doctoral researcher at Brunel who led the study. “Children with CP get far more well-organised help.

“But little was known about how adults with CP access and experience physiotherapy services in the UK, so we designed a study to listen to and understand their perspectives, bringing their voices to the fore.”

The researchers interviewed 22 adults with CP, and with a wide range of needs and experiences. The individual stories included a music festival fan who needs regular physiotherapy to maintain her ability to transfer from her wheelchair to a toilet by herself, and also an adult who felt abandoned by services when they turned 18. “You still have the condition, but everybody’s closed their book on you, basically… You’re just pushed off a cliff,” they said.

“We heard how adults with CP try to access physiotherapy through several different ways,” said Cook. “They can go to their GP to get a referral. In some services, they can self-refer. They can go to charity services, and they can also go to private services. But the particular needs of adults with CP are hugely varied, and there isn’t a clear pathway to make sure an individual reaches the right service to meet their needs.”

For the participants who did find the services they perceived as meeting their needs, they are highly valued. “And that can really help the quality of their lives,” said Cook. “Not just from a physical perspective, but through their ability to keep and thrive at their jobs, and through their ability for social interaction.”

The adults with CP took the most meaningful findings from the study and worked with the researchers to create the animation, including that physiotherapists should work in partnership with adults with CP to review existing provision and to develop new services – working together to design what those services should look like, who should staff them, how they are funded, and to identify links to other services.

The video – available on YouTube to watch and share – urges that services should be clearly signposted, accessible and flexible, as well as offering support throughout people’s lives.

Brunel physiotherapy expert Prof Cherry Kilbride, who worked on the study with Cook and with Dr Betty Cassidy, added that they recommend that the person-centred approach is adopted as the ‘foundational philosophy’ guiding physiotherapy services and interventions for adults with CP.

"More specialist physiotherapy services are urgently needed to meet the needs of adults with CP in the UK,” said Prof Kilbride. “By listening to their needs and by working in partnership with them, we can shape services that improve care and support throughout adulthood."

“I recommend that people share this animated video to raise awareness of the difficulties experienced by adults by CP, and to advocate for their needs.”

If you have any questions or feedback on the animation please contact the team on radicalresearchingCP@gmail.com we will be pleased to hear from you.