Want to Talk about Physio and Adult CP? Please complete the Survey!
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
‘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 Gemma.Cook@brunel.ac.uk
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Specialist Information Officer and Cerebral Palsy Programme Lead
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Comments
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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.
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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 and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know. -
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
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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 and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know. -
Done the survey, let’s hope it helps everybody like us who need it
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Thanks @yorkshirebell have you seen the new quality standards for adults with CP?Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know. -
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.
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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 and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know. -
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.
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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 @yorkshirebellScope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know. -
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,
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Please do keep me updatedScope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know.
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