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“Have Your Say: Physiotherapy Services for Adults with Cerebral Palsy

Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
edited October 2019 in Cerebral Palsy

Little is currently known about how physiotherapy services are received by adults with CP, therefore a collaboration of researchers from Brunel University London and The Royal College of Surgeons in Ireland have launched this survey. Any adult with Cerebral Palsy from the UK and Ireland is eligible to take part.

The main aims of the survey are to understand the reasons why people try to access services, what services are actually provided, and in turn what is valued and or could be improved. The findings could lead to guidance on what areas require further research and how to model and improve services. 

This survey provides an opportunity for adults with CP to have their opinions heard and to be a part of what is promising to be an exciting time for research in this area.

To complete the survey, and for further information, please follow this link:


https://brunel.onlinesurveys.ac.uk/the-views-and-perspectives-of-adults-with-cerebral-palsy_1


The above post has been moderated and checked by the Scope Community Team.  
Posts in the Events, research and opportunities is the only board that permits the publishing of an email, contact number or survey link.  This survey has been posted here as it is Cerebral Palsy specific and from a trusted Education and research institution.

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Scope
Specialist Information Officer - Cerebral Palsy

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Replies

  • nicebootsniceboots Member Posts: 195 Pioneering
    Really interesting survey, I wonder if the results will change access to physio for adults with cp. I hope so as access to services is one of the most frustrating things I come across as an adult. 
    When I was under paediatrics it was a lot better, although that was back in the 90s and early 00s where funding was not as tight as it seems to be now! 
    I personally would like a fast access pathway for adults with lifelong conditions such as cp that benefit from regular physio, and more flexibility in the amount of sessions that are allowed. At the moment I can only see a physio for 6 sessions, that’s after having to see my GP for a referral, then waiting on average 12 weeks. As a person that lives alone, I feel it would be helpful to have regular physio to give the muscles that I struggle to stretch myself a good stretch. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    I completely agree with you @niceboots. I had all but given up on physiotherapy for those reasons. I am optimistic that with the publication of the NICE guidelines for Adults with CP and the increase in research into this particular demographic, things will improve for us.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • newbornnewborn Member Posts: 541 Pioneering
    Not only c.p.  Many need lifelong continuity of physiotherapy supervision and monitoring and support.
    A N D hydrotherapy.    

    It is insulting to read endless and invariable advice to go and get exercise, always by going for a brisk walk, or cycling.   With a zimmer frame? Really?  

    Do none of the folk on the taxpayer's payroll actually have the slightest knowledge about the existence of disability? Or Disablism? Or the Equalities  Duties?

    There must be a Disabilities Minister, who must have a duty to enforce the equalities  duty, which will as a side effect have the result of attending to Ageism,  in many ways.

    Sir Trevor Phillips noted that Disablism is universally practiced,  insttutionalised, and invisible,  and is worse, in it's  effects on people's lives, than Racism. 

    He could equally have said the same about Ageism, but as Chair of the Equalities Commission,  he had either never given it a thought, or simply didn't care.

  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Completed. Some of the questions were eye opening. 
  • SteveESteveE Member Posts: 48 Courageous
    Email sent to Brunel Uni asking why they don't want to hear about my son's experiences with physiotherapy services over the last 48 years. Hopefully they'll clarify whether parents are permitted to provide information when their "child" is unable to do so due to disability (ironically made worse due to withdrawal of physiotherapy services :( )
  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    Hi @SteveE
    Brunel would be keen for you to complete the survey on behalf of your son. My experience with physiotherapy has been similar over the years.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • SteveESteveE Member Posts: 48 Courageous
    Hi @SteveE
    Brunel would be keen for you to complete the survey on behalf of your son. My experience with physiotherapy has been similar over the years.
    I hope they respond positively - it is a shame that their words suggest only those with CP can respond. Why can't they just make that clear.  Same issue with the Scope survey which insists only those with CP can participate (and on the phone too?!) Automatically rules out quite a lot of people. Not very S= is it?

    Steve

  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    @SteveE
    Both surveys are specifically interested in the experience of people living with CP and their families. The Scope survey is being adapted to accommodate people who wish to take part but find using the telephone difficult.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • SteveESteveE Member Posts: 48 Courageous
    OK but neither survey suggests a third party person can answer for the CP person. Surely, esp S=, the design process for these surveys should start from the equality position and ensuring the introduction/rules properly explain who can participate. I hope my comments as someone at the very sharp end are constructive.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    Thank you @SteveE your comments are very helpful.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • SteveESteveE Member Posts: 48 Courageous
    Thank you @SteveE your comments are very helpful.

    Well, we didn't hear back from the people running the survey :(  which makes us think the whole thing is a set-up and the conclusions are already written. So we completed the online questions anyway ;)  A chance to express our experiences of a physiotherapy service that for a long time was caring and professional and proactive, and which has become wholly reactive to referrals only, totally reliant on someone else (parents in our case) to start the referral process which needs to start at least one month after the previous referral. No guarantee of continuation. Utterly crazy. Meantime, well-being goes down the pan. Perhaps that is the plan. We ended our response to the survey with the word "HELP" (yes, in caps).
  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    Hi @SteveE
    The results will need to be collated before we hear of any conclusions. Your experience is the same as mine. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • SteveESteveE Member Posts: 48 Courageous
    Hi @SteveE
    The results will need to be collated before we hear of any conclusions. Your experience is the same as mine. 
    Yes, collation then conclusion - that is the expectation! But they don't seem very communicative which raises concerns.

    Richard - I hope you are not experiencing the same downturn in physical and mental well-being my son is enduring.

    Steve

  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    I have contacted Brunel University and they have confirmed that the survey will remain open until the end of September. Then they move into a period of collation and analysis. The results will then be disseminated to organisations including Scope. I have received confirmation that I will be given the results and I will of course share with interested people on the community.

    @SteveE I am experiencing something similar. It started roughly 20 years ago.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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