Can education, activity and access to specialist services in people with Cerebral Palsy change lives?
Cerebral palsy (CP) is the most common childhood motor disability, and recent data suggests that up 90% of children survive into adulthood. But where do these adults end up and go and why aren’t they routinely seen by medical and therapy teams as they get older?
A recent study found that when compared to other neurological conditions with a similar prevalence, such as multiple sclerosis or Parkinson’s disease, the proportion of adults with CP accessing specialist services was much lower.
In theory CP is a non-progressive condition, however, because it is a developmental disorder it affects muscles and bones from a very young age. This can lead to excessive stresses and strains on the body and in combination with the fact that people with CP use up to three to five times more energy than those without, this can make individuals susceptible to premature ageing. People can also suffer other health complications such as fatigue, osteoarthritis, osteoporosis, anxiety, depression, high blood pressure and pain over time.
It is with this in mind that we started our online CP Empower course, run by a neuro physiotherapist to invigorate and support people to engage in and understand the importance of being physically active. In these six one hour sessions the focus is on education, and introducing varied exercise that optimise activity levels, which can improve the body’s efficiency and self-awareness. Over three cohorts we have found that the peer support offered by participants has been most important for motivation, building self-esteem and recognising they are not alone in the challenges they face. On asking individuals what they found most beneficial about the six week course, comments included:
“The feeling of achieving and connecting with others with similar challenges”
“It gave me the motivation to take positive action”
“Working with others in the same situation”
Offering people the opportunity to get active in a CP specific group has multiple impacts that have the potential to change day to day function, as well as a positive attitude to activity and building regular exercise into life long term. You can read more about Chloe’s experience of the course here, and find out more about the six CP Empower sessions that have been tailored to areas that can be problematic as you age with CP here.
The lack of care parity and access to highly specialist services for adults with CP is starting to be recognised, with a number of groups and charities such as UP: The Adult Cerebral Palsy Movement and Scope pushing to improve access to services. What should also be highlighted here is the All-Party Parliamentary Group (APPG) on CP, a group of policy makers, expert clinicians and people with cerebral palsy who are trying to highlight the disparity and issues across the country through showcasing best practice and making recommendations to parliament to raise the profile of CP.
There have been three published reports so far with the most recent call for evidence due by the 12th August. This is for people with lived and professional experience in the process of supporting the transition of young people with CP (aged 14-25) into adulthood. For more information and to get in touch with the APPG please email CerebralPalsyAPPG@connectpa.co.uk.
Meanwhile, people with CP having access to specialists who can help them live well with post-impairment syndrome and other long term challenges will also allow a breakdown of barriers. Barriers that might prevent opportunities or the ability to exercise need to be broken, to encourage and support people to move well, and push boundaries on what they think is possible.
The next CP Empower course will run online from 18th October to 22nd November 2022, for one hour each Tuesday evening with our specialist CP Physiotherapist Bex Walters. The course will be available to book soon, please email us with questions or expressions of interest to helloneuroheroes@gmail.com.
