Cerebral Palsy
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Want to Talk about Physio and Adult CP? Please complete the Survey!

Richard_ScopeRichard_Scope Community Team Posts: 2,619 Scope community team
edited January 2020 in Cerebral Palsy


The UK and Ireland online survey which asks adults with Cerebral Palsy about health service accessibility and their general health is open until the end of February 2020.

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

Please complete the survey if you haven't already done so :smile:


‘Are you interested in talking about your experiences of physiotherapy?’

 

What: a research study about what adults with cerebral palsy think about physiotherapy and physiotherapy services.

 

Why: Physiotherapy and other services are important to optimise the health of adults living with CP, and yet little is known about what adults with CP think about physiotherapy.

 

Who can take part: adults over the age of 18 years with cerebral palsy of any type or severity.

 

How: one face-to-face interview with a researcher from Brunel University London

Where: your home or Brunel University London or a quiet location convenient to you and the researcher.

 

Interested? Contact [email protected]


The above post has been moderated and checked by the Scope Community Team.  


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Scope
Specialist Information Officer - Cerebral Palsy

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Replies

  • jadealyssajadealyssa Member Posts: 63 Courageous
    I think this is a fantastic idea but also may be and idea for them to do a survey on parents/ carers to children with CP who have physio. My son receives physio onna regular basis for his CP and I think his team are fantastic and cant thank them enough because are the reason he is as mobile as he is now and always helpful to refer us to further services such as orthotics.
  • Richard_ScopeRichard_Scope Community Team Posts: 2,619 Scope community team
    Hi @jadealyssa
    It's fantastic to read that you and your son have had such a positive experience! Physiotherapy is so important to everybody living with CP. 

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • yorkshirebellyorkshirebell Member Posts: 12 Connected
    As a child and into early adulthood, I had physio on a fairly regular basis, it was usually for 6-8 week each time, and many times in the hydrotherapy pool which was the very best way to relax stiff muscles, but over the years the physio wasn’t offered anymore, my last attempt to try and get more mobility or even keep the mobility I am still clinging onto, was about 5 years ago, the procedure the hospital tried was to fit a baclofen pump,  I was admitted to hospital to see if it would work, unfortunately for me it didn’t, I was told it didn’t work because my muscle stiffness was keeping me walking, if they reduced the stiffness, then I would not be able to walk, I totally understand, but then I was told there’s nothing more they can do,good bye, no physio was offered and that was that, but now that stiffness is worse, what do I do, go down the route of seeing my GP who has prob never seen me before, I need some exercise from a physio who knows about CP, I would appreciate it if anyone had any thoughts on this, thank you 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,619 Scope community team
    Hi @yorkshirebell
    I haven't had physio for a long time. the last time I did, I paid privately. That's why getting people like us involved in research is so important. It will help shape service provision.

    If you haven't already done so it would be great if you could complete the survey
    https://brunel.onlinesurveys.ac.uk/the-views-and-perspectives-of-adults-with-cerebral-palsy_1
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • yorkshirebellyorkshirebell Member Posts: 12 Connected
    Done the survey, let’s hope it helps everybody like us who need it
  • Richard_ScopeRichard_Scope Community Team Posts: 2,619 Scope community team
    Thanks @yorkshirebell have you seen the new quality standards for adults with CP?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • yorkshirebellyorkshirebell Member Posts: 12 Connected
    Hi, Richard-Scope,  Thank you for making me aware of  the  quality standards for adults with CP, does it mean that, if I am having problems with stiffness or anything connected to my CP, I should be able to contact a specialist in cerebral palsy at my GPs, I only ever see my GP if I go for something unrelated to my CP.
  • Richard_ScopeRichard_Scope Community Team Posts: 2,619 Scope community team
    The Quality Standards are there for you G.P. to follow, should you go to them with an issue that could be related to you CP. It gives the G.P. a clear treatment pathway for physical, emotional issues. We now have the power @yorkshirebell

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • yorkshirebellyorkshirebell Member Posts: 12 Connected
    Hi, Thank you so much for that information, I should already know all about The Quality Standards, I feel so silly for not knowing, I think it’s about time I saw my GP to see what help he should give me, yes it’s about time we had the power to make GPs take notice and listen to us.
  • Richard_ScopeRichard_Scope Community Team Posts: 2,619 Scope community team
    Don't feel silly! The standards were only published last week. I have posted them for people to become familiar with what they should expect. If you need any help and support, you know where I am @yorkshirebell
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • yorkshirebellyorkshirebell Member Posts: 12 Connected
    Richard_scope, Thank you so much for your reply, it’s lovely to hear that there is people like yourself, who can help me and others sort out the problems we face, with advice and above all understanding, I will let you know if my GP is as understanding as you are, I very much doubt it, I’m just a name in his very long list, 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,619 Scope community team
    Please do keep me updated :)
    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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