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Care cuts

Discussion in 'Health News and Research unrelated to ME/CFS' started by Amw66, Mar 27, 2018.

  1. Amw66

    Amw66 Senior Member (Voting Rights)

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    Jan, NelliePledge, Binkie4 and 7 others like this.
  2. Hell..hath..no..fury...

    Hell..hath..no..fury... Senior Member (Voting Rights)

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    Our future is too frightening to think about. Every time i feel sorry for myself in the present, the only thing i have to cheer myself up is, these are probably ‘the good times’ in relation to what’s coming :(
     
    Jan, MeSci, Indigophoton and 3 others like this.
  3. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    Can confirm it's a serious issue. I am completely bedbound, extremely physically limited, mostly unable to move except for my arms, and totally dependent on carers funded in large part by my local council.

    I've been told that if I can't cope at home then I have to go into a care home. My carers are here for an hour and a half a day (in pairs, so three hours of support), so I'm alone 22½ hrs a day, incapacitated.

    My GP requested more support for me, and the council declined. The situation is precarious: if anything breaks or goes wrong (eg, an issue with the central heating), I'm stuck, because there is not the support to deal with it. I have to have groceries left on the doorstep, and got food poisoning twice last summer as cold stuff presumably got too warm.

    (my emphasis)

    I've asked the 40-50 carers I've met in the last 6 or 7 months about care homes, as part of sussing out the worst case scenario. Every single one of them responded negatively - until I said it might happen to me - then they tried to make it seem OK, for my sake.

    And that's the situation before taking into account the complications of severe ME, which I'm certain care homes cannot accommodate nor understand.

    The situation for the severely ill and/or disabled with any condition who do not have family/family support is horrendous.

    I've decided that if it comes to that, that's where I draw the line, and it's game over.

    On the upside, an unexpected but potentially helpful outcome of writing to my MP about PACE was that the MP wrote back to say not only was she taking up the issues with the Minister, but, as I described in my letter some of my experience of the consequences of the BPS view, she was also concerned enough to offer to write to the council about my support (which hadn't been my intention at all, so is very kind of her). So when I am well enough for the meeting with the council that I assume will follow, I will take her up on that.
     

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