Hi,need some advise with my sons afo/splint - alternatives to NHS?

Jameswseaview
Jameswseaview Online Community Member Posts: 6 Listener
edited September 20 in Talk about your impairment

Any advise would be greatly appreciated

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  • Rachel_Scope
    Rachel_Scope Posts: 1,842 Scope Online Community Coordinator

    Hi @Jameswseaview and welcome to the community. Could you tell us more about what you need help with?

  • Jameswseaview
    Jameswseaview Online Community Member Posts: 6 Listener

    Thanks , my son olliver who is 8 is constantly having to have it changed as its causing injuries granted he is growing but by the time he is measured for a new one and 3 months later he recieves its almost time to have a new one .

    Its a constant merry-go-round , im just wondering if there is any alternatives that perhaps I could buy that isnt available on the nhs.

    Any suggestions would be greatly appreciated

  • Jameswseaview
    Jameswseaview Online Community Member Posts: 6 Listener

    I find that the afo seems to be so problematic seems to do more harm then good , olliver gets upset , so many bruises and blisters

  • Rachel_Scope
    Rachel_Scope Posts: 1,842 Scope Online Community Coordinator

    Thanks @Jameswseaview. This isn't something that I'm familiar with, but have you raised this with your sons Dr? I'm sure they would want to change things if he was struggling with bruises and blisters.

    Some of our members may have some personal experience of this and can advise you.

  • Jameswseaview
    Jameswseaview Online Community Member Posts: 6 Listener

    Yes it has been raised with the GP and physio etc , it be good to hear from anyone that has had the same issues what they have done please any suggestions would be most welcome 🙏

  • Wibbles
    Wibbles Online Community Member Posts: 2,830 Championing
    edited September 20

    I use an NHS supplied custom built KAFO (from USA) - Which I have been told would have cost me upwards of £5000, if I had paid for it myself !

    I should imagine that a custom built AFO would be £2000 + and would need replacing regularly because your son will be growing — so stick with NHS unless you are made of money.

  • Jameswseaview
    Jameswseaview Online Community Member Posts: 6 Listener

    Hi thanks for your comment

    A custom made kafo ? Never heard of that

    Just at a bit of a loss what to do

  • Wibbles
    Wibbles Online Community Member Posts: 2,830 Championing
    edited September 21
    https://forum.scope.org.uk/discussion/comment/1069268#Comment_1069268

    I assume that you have seen your local NHS Orthotics team ?

    What do they recommend ?

  • Jameswseaview
    Jameswseaview Online Community Member Posts: 6 Listener

    Hi thanks yes have seen the orthotics team .

    The only thing they have recommended is what we have been using , some point soon surgery will be option ,to stretch the muscle etc only when he is a bit older.

    We are due to have a further gait analysis appointment at guys hospital in london

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