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This video is available on YouTube in English; in English audio with BSL and English subtitles;
in English audio with Irish SL and Irish subtitles; and in English audio with Welsh subtitles
A new animated video – released today on World Cerebral Palsy Day – highlights how difficult it is for adults with cerebral palsy to get the physiotherapy help they need and recommends ways future services could be shaped.
The video was written and voiced by adults with cerebral palsy (CP) in partnership with researchers who spoke to them about their personal experiences of how well physiotherapy and physiotherapy services meet their needs.
These interviews and the making of the video took place as part of research led by Brunel University London, the findings of which offer insights to physiotherapists, policy makers and health organizations that have the potential to shape the future development of services.
Cerebral palsy is a condition affecting around 1 in 400 children in the UK and can affect their movement, co-ordination and development to varying degrees from mild to severe disability. Improvements in life expectancy mean that there are now roughly three times as many adults with CP as there are children with the condition.
These adults may have weakness, fatigue, muscle stiffness, and muscle and joint pain that may worsen or start new with age—and they are more likely than other adults to develop diabetes, stroke, and chronic respiratory diseases.
“Despite this great need for physiotherapy services for adults with CP, access to services in the UK as a whole appears to be somewhat patchy,” said Gemma Cook, a PhD student at Brunel who led one of the studies. “Children with CP receive much better organized help.
“But little was known about how adults with CP access and experience physiotherapy services in the UK, so we designed a survey to listen 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. Individual stories include a music festival fan who needs regular physiotherapy to maintain his ability to move from his wheelchair to the toilet on his own, and an adult who felt left out of services when he turned 18. “You still have this condition, but everyone’s got their book closed on you, actually… You’re just pushed off a cliff,” they said.
These interviews revealed that:
- Adults with CP find it difficult to identify and access specialist physiotherapy services and to obtain information and advice to help them best manage their condition.
- Adults with CP require physical therapy services throughout the different phases of their lives to meet their current needs and to anticipate and – where possible – prevent future needs.
- Participants placed a high value on person-centered physical therapy, which includes individualized treatment and valuing the patient’s empowerment and priorities.
“We heard how adults with CP try to access physical therapy in a few different ways,” Cook said. “They can go to their GP to get a referral. In some services, they can be self-directed. They can go to charitable services and they can also go to private services. But the specific needs of adults with CP are extremely varied and there is no clear pathway to ensure that an individual reaches the right service to meet their needs.
For participants who found the services they perceived as meeting their needs, they were highly valued. “And that can really help their quality of life,” Cook said. “Not just from a physical standpoint, but through their ability to keep and thrive in their jobs, and through their ability to interact socially.”
The team also conducted an online survey of over 160 adults in the UK and Ireland to gather the views of adults with CP on physiotherapy, which found that around 4 in 5 participants had experienced pain for more than 3 months, with a similar amount reported a decline in mobility after age 18 and at least one fall in the past year. Nearly 2 in 3 participants sought physical therapy for problems related to walking or reduced mobility, and a similar number reported not being able to access the physical therapy services they needed.
Adults with CP took the most significant findings from the studies and worked with the researchers to create the animation, including that physiotherapists should work in partnership with adults with CP to review existing services and develop new services – working together to we design what these services should look like, who should serve them, how they are financed and identify links with other services.
The video – available on YouTube to watch and share – calls for services to be clearly signposted, accessible and flexible, and to offer support throughout people’s lives.
Brunel physiotherapy expert Prof Cherie Kilbride, who worked on the studies with Cook and colleagues including Dr Betty Cassidy in the UK and Manjula Manikandan in Ireland, added that they recommend a person-centred approach is taken as “ foundational philosophy’ guiding physical therapy 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 working in partnership with them, we can shape services that improve care and support throughout adulthood.
“I encourage people to share this animated video to raise awareness of the difficulties experienced by adults with CP and advocate for their needs.”
- Understanding Physiotherapy and Physiotherapy Services: Exploring the Perspectives of Adults Living with Cerebral Palsy, by Gemma Cook, Elizabeth Cassidy and Cherie Kilbride, is published in Disability and rehabilitation.
- Access, use and satisfaction with physiotherapy services among adults with cerebral palsy living in the UK and Ireland, by Manjula Manikandan, Elizabeth Cassidy, Gemma Cook, Cherie Kilbride, Claire Kerr, Aisling Walsh, Michael Walsh and Jennifer M Ryan is also published in Disability and rehabilitation.
Reported by:
Joe Buchanan, Media Relations
+44 (0)1895 268821
joe.buchanunn@brunel.ac.uk
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