Disability aids and equipment
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What is the process for getting mobility aids?

historynerdhistorynerd Member Posts: 1 Listener
Hi! I know this is late but I’m 17 and I was diagnosed with chronic fatigue syndrome this year. I’ve had it for 3 years but I was told I was fine etc. I got a lot worse over summer 2019 and now if I go walking for more than 30 minutes continuously before I get exhausted. I’m also in the process in getting referred to a cardiologist as whenever I stand up my heart rate goes from 70bpm to 120bpm and I get dizzy and fall over. I get really upset about not being able to leave the house much and so I’m looking into mobility aids. My parents were quite against it but are coming around to it but I don’t know what mobility aid would be best for me and what the process is? Thank you!

Replies

  • neuromum4neuromum4 Member Posts: 67 Courageous
    edited June 2020
    Hello, sorry to hear about your CFS.
    I went through occupational therapy. 
    I called my GP and they took it from there, a referral to OT and wheelchair service.

    The OT will be thorough and may identify other aids that may also help your everyday life.

    What sort of aids did you have in mind?

     It's much safer, especially if your dizzy and fatigued. It's hard enough finding energy which I understand the smallest of task can mess you up for days with the payback.


    I started with a cane and now I have a wheelchair, this was through the NHS wheelchair service and my mum bought me a scooter (not always able to use scooter because of numbness in my arms).

    I have orthostatic intolerance and need be in a  tilting/ laying position.

    Maybe a tilting powerchair?

    That's what I am currently looking into, thinking back I felt that would have been a suitable option. I didn't know anything about aids then.

    It's hard but trust me it will really make such a huge difference to your life.

    I would suggest you speak to your Gp.

    I hope others on here can give you more advice but that's the route I took.

    Please take care and all the best.

    Neuro.

  • emmarenshawemmarenshaw Community champion Posts: 704 Pioneering
    Hello @historynerd welcome to the community. As @neuromum4 says it would be good if you could speak to an OT as they’ll be able to advise/assess  you.
  • emmarenshawemmarenshaw Community champion Posts: 704 Pioneering
    @historynerd please let us know how you get on and if we can help you with anything else.
  • serenkserenk Member Posts: 18 Courageous
    Hey @historynerd,

    I have vasculitis, fibromyalgia and chronic fatigue. My old rheumatologist was really against me using a walking aid, but because my lungs are really impacted by my illness and I get tired very easily, I bought one myself. I’m not really sure why it helps me, but it really does - especially in the winter (usually I can last the summer not using it).

    I would also be really interested to know how to speak to an occupational therapist, as I struggle with so many things and could do with some advice. 
  • christian96christian96 Member - under moderation Posts: 101 Courageous
    Hello @historynerd

    A occupational therapist came and assessed me first of all. She next wrote a report for me containing some useful recommendations then I contacted the DLF plus wheelchair services for some more tailored advice and help on how to proceed further. The report was certainly useful. My occupational therapist was a very good source of information and suggestions as well. See if you can find a local occupational therapist in the area willing to help you, that is the first thing to do. I have open defect spina bifida. My orthopedist was the only specialist who helped me to find a local occupational therapist two summers ago when I asked. I have a manual wheelchair and crutches for indoor use only along with a pair of orthotic special shoes for walking. There is a lot out there. All that you need to do is to ask your doctor etc for support in accessing aids. 
  • janer1967janer1967 Community champion Posts: 7,236 Disability Gamechanger
    Hi @historynerd @serenk

    You can self refer for a OH Care needs assessment through the gov website. you complete the form online and then a OH will visit you and do an assessment and recommend any aids or adaptions you may need and point you in the right direction to get them
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @historynerd and welcome to the community! How are you doing today?

    It can be an adjustment to start using a mobility aid, but you are not alone in that.

    Here is an NHS page which shows how you can access different types of aids.

    If you feel like you would benefit from other aids or support (like things around the house) then you can request a needs assessment. @serenk, this also might be useful for you. :)
    Community Partner
    Scope

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  • serenkserenk Member Posts: 18 Courageous
    janer1967 said:
    Hi @historynerd @serenk

    You can self refer for a OH Care needs assessment through the gov website. you complete the form online and then a OH will visit you and do an assessment and recommend any aids or adaptions you may need and point you in the right direction to get them
    Thank you so much!
  • newbornnewborn Member Posts: 655 Pioneering
    All good info. I would add that sometimes,  what is stocked by n.h.s. is not optimum of it's kind, and there is a need to do private research and buy privately, maybe second hand.

    For instance,  n.h.s. trusts and councils employ advisers and suppliers who may not stock, or mention, shock absorbing crutches. Or gutter arm rollators. Or, for certain  conditions where people  need to be extra warm in bed, but cannot bear the weight of conventional bedding,  and cannot manage  to turn over unaided because  they are too weak, it may be life changing to save up a couple of hundred  pounds and buy a pure down duvet.  But experienced  professionals who know that fact,  will refuse to disclose the tip to a desperate patient.
     (Apparently,  they fear that if people know a way to ease pain, get sleep, and  ease into another position,  they might refuse to pay for it themselves,  and start going to court to demand it from public services.)

    Mind, the official  hatred of anyone with savings  means it is fine to have a house worth millions, and get free public services,  but  patiently setting aside pennies till there are savings is treated as the worst possible crime  !

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