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UK article: Mum trapped inside home says she feels like a burden on her family

Discussion in 'General ME/CFS News' started by Sly Saint, Sep 6, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    article here
    https://www.cornwalllive.com/news/cornwall-news/woman-trapped-inside-home-describes-3286934

    (not sure why she is having to crowd fund for this(?) there is the Motability scheme)
    https://www.motability.co.uk/about-the-scheme/personal-independence-payment/
     
  2. Simbindi

    Simbindi Senior Member (Voting Rights)

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    Yes, you can lease a powered wheelchair through the Motability Scheme instead of a car. However, if you need both then that is a problem unless you have the money to cover the additional costs, because most people with even severe M.E. will not be eligible for an outside powered wheelchair through the NHS.

    You can also apply for a grant in England for adaptations to your home (minor and major adaptations) including a stairlift (if you have a suitable home).

    It annoys me when people crowd fund without at least trying for government funded help first, although I suppose it's not really my business. It's just that it gives the public a false impression of what funded help may be available. If the person has been denied benefits or grants, then that is a quite different situation.
     
  3. Trish

    Trish Moderator Staff Member

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    I feel for her, but am puzzled too that she does not mention applying for PIP.
    This bit is odd:
    There is no way of knowing which person with ME will end up having to use a wheelchair by 30 or any other age, so that advice is way off. And then attributing not needing a wheelchair until age 39 to 'determination and willpower' is very unhelpful, and inviting judgement of people who need wheelchairs sooner. I wish people wouldn't do that.
     
  4. Wonko

    Wonko Senior Member (Voting Rights)

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    Around 2008, based on the falls and resulting small injuries I was having whilst out, and the increasing frequency, I thought I would need a wheelchair within a year. This would have been problematic as I live in a 2nd/3rd floor flat with no lift, by myself.

    It's one of the reasons I started strength training, no matter how much it hurt and reduced my capabilities in other areas I saw it as better than being stuck inside.

    It backfired, and worked, sort of.

    Over the next couple of years I stopped having so many falls, mainly because I went from being able to walk a few miles, as needed more or less, to having an upper range of a few hundred meters, occasionally. There is nowhere to go within that distance, other than a corner shop (which I lived out of for a few years before I found out about online shopping), so I didn't go out, so the falls stopped.

    Success, sort of.

    I am, in general, much more limited now than I was then, I can walk, not that far or that fast (a recent 'test' would suggest my pace is 48 minutes per mile, and getting PEM from it).

    I do not expect to need a wheelchair any time soon, even if I was on the ground floor with easy access I suspect it would currently be more trouble than it's worth for the sort of jaunts I undertake. Only if I was out for longer would it be advantageous.

    I just love the way that the press, and professionals, involved in disability issues, just assume that things will be funded by someone else.

    It took a friend of mine 2 years to get a wheelchair out of the NHS, custom made, as it was specifically made t not be self propelled pretty pointless for someone who lived alone.

    I have no problem with a crowdfund for such issues, although I wouldn't do it myself.
     
    alktipping, Webdog, DokaGirl and 2 others like this.
  5. kilfinnan

    kilfinnan Established Member (Voting Rights)

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    From personal experience. Tribunal accepted my diagnosis but agreed with DWP that "profound ME" didn't accrue enough points. Part award, so saved and bought my own 2nd hand scooter. Should have done it earlier.
     
    Chezboo, alktipping, Webdog and 4 others like this.

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