Cerebral Palsy
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How do I find safe private treatment and specialists experienced in CP?

AlisonRAlisonR Member Posts: 3 Listener
edited March 2017 in Cerebral Palsy
Hi I have mild cp on my left side and have been able to lead a independent and "normal" life. I am 40 and over the last few years (after having two children and an ill advised attempt at getting fit), I am now having trouble with pain in my left ankle, hips, lower back and a very tight tendon. It is effecting my ability to walk, the pain is difficult to manage and I feel tired all the time. I have had some private physo, seen a NHS physo once and have been referred for orthotics. I am doing my exercises and stretches but would like to try other treatment options to deal with my current problems and prevent future ones.

How do I go about finding good safe private treatment and specialists experienced in cp? GPs do not really seemed to know what to advise, the NHS advice is aimed at children or people with severe cp. Google is not a safe way of finding treatment options and to be honest I do not really know what to ask for. 

Any advise or recommendations would be great as I am hoping to go back to work soon and need to sort myself out. 

Replies

  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hey @AlisonR
    I've looked into various things myself over last couple of months and they honest answer is that there is not a lot out there.
    You could try and get the names of orthopedic consultants (some do have knowledge of CP).
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • StayceStayce Member Posts: 398 Pioneering
    Hi @AlisonR
    I agree with @speedincaesar - it's very hard to find specialist assistance and it often is up to the individual to propose possible options to GPs in my experience.
    I have used Google in most for most of my successful treatment searches
     
    Have you given some thought as to what sort of healthcare professional you think would be helpful in your case

    - Neurologist
    - Spasticity Management
    - Orthopaedic consultant specialising in CP
    - Other therapy based options: osteopathy, acupuncture, hydrotherapy, neurological physio

    I would also talk to the private Physio and orthotist (when you see them) about other options available. I would say don't be concerned about telling them it isn't working for you as you had hoped - can we also explore other options alongside what we are doing here

    Hope this helps

    Best wishes 



  • veritercveriterc Member Posts: 196 Pioneering
    I wonder if we could push for CCG or similar to do quality checks on private treatment.  Here in London there is a 'them and us' mentality;  no help in finding good private treatment, but NHS can't provide adequate services.  In November GP said she would refer me for help; yesterday had a letter out of the blue saying that an appointment for this had been booked for March 21st (first I knew of it) but sorry - it was cancelled.  And no alternative date.  And now local hospital are trying to start private services and get us to use them at vast charges,  Their private wing has got rid of Sister, uses Healthcare assistants instead of nurses, and charges £750 a day +++.
  • AlisonRAlisonR Member Posts: 3 Listener
    Hi guys thanks for your advice, a good starting point. I found a thread on this site about treatments people have tried so I think I will start googling my way through that. It is nice to be able to speak and listen to other people with CP, I should have done this years ago!
  • StayceStayce Member Posts: 398 Pioneering
    Hi @AlisonR

    We all find the Scope Community in different ways but it is a valuable resource for sharing things which we can all learn so much from.

    Do let us know how you get on and if you need any further help just let us know

    Best wishes 


  • AlexAlex Scope Posts: 1,324 Pioneering
    Hi @AlisonR,

    How are you getting on? Were you able to find treatment? 
  • AlisonRAlisonR Member Posts: 3 Listener
    Hi Alex, funnily enough I have been fitted for my orthotics today. I went private and saw Dr Stuart Miller at the Bristol Nuffield hospital. He is the head physio for the British para Olympic team so understands CP.  He spoke a lot of sense and referred me to Dr Sue Barnett who makes high quality orthotics. I have not tried them out yet but they were both very through in thier assessment of me and not rushed like a 15min NHS appointments. I have high hopes!
  • AlexAlex Scope Posts: 1,324 Pioneering
    Thanks for the update - and useful information for anyone who stumbles upon this discussion.

    That sounds good. Hope the new orthotics work out well. I remember @Noah commenting that his orthotics had made a huge difference to his life, so I hope you feel the same too soon!
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