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ME Association and Carol Monaghan meeting with DWP Minister about benefits

Discussion in 'General Advocacy Discussions' started by NelliePledge, Jun 26, 2019.

  1. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  2. dangermouse

    dangermouse Senior Member (Voting Rights)

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    Grateful to all who attended to raise these very relevant issues.
     
  3. dangermouse

    dangermouse Senior Member (Voting Rights)

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    “Re-assessments, which form part of the on-going review process, should be reduced in frequency where a person can supply medical evidence to show that their condition has stabilised for a period of years and that all appropriate approaches to management have been tried. Information on 5-year prognosis in ME/CFS from the CMO report was referred to here.”

    I’m confused - what would the appropriate approaches to management be?
     
  4. Trish

    Trish Moderator Staff Member

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    No idea, but I suspect it helped my case that I had been through the local ME service process (even though it was 8 years ago and just a few home visits from an OT who had nothing to offer except stuff I already knew). That presumably meant they could tick that box. It could, I guess, also mean showing you have been in contact with your GP. My daughter had one of her benefits refused some years ago on the grounds that she hadn't seen any doctor for over a year.
     
  5. dangermouse

    dangermouse Senior Member (Voting Rights)

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    Maybe, yeah.

    I’ve attended a CFS clinic run by OT’s when first diagnosed and some years later a Fibromyalgia clinic that was run by Physio’s. Neither of which had any lasting or helpful effect.

    Other than that I’ve had pain relief but couldn’t tolerate it.
     
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    something I didn't know, but also something the assessors appear to ignore.
     
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  7. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I think that’s likely to be interpreted in practice as having gone through an NHS CFS clinic. ETA see @Trish already made that point. The powers that be can’t argue that there is anything that could “help” if you’ve already gone to the clinic and it hasn’t helped. It’s rather Russian roulette approach though because if you go to the CFS clinic not knowing that you need to be wary of their approach you are at risk of harm.
     
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  8. dangermouse

    dangermouse Senior Member (Voting Rights)

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    Damned if you do and damned if you don’t - good old Catch 22.
     
  9. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I sort of managed to get away with going to the CFS clinic although in retrospect I did end up increasing activity while I was doing the programme at least I knew enough not to try going for daily walks or anything like that. And at least it is on record that I’ve done that so I can’t have not doing it held against me.
     
  10. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    Id like to see the case law they are referring to because from my understanding this is a gross oversimplification of the reliability rule. Especially giving a seemingly arbitrary time like that.
     
  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    How does it work if there are no clinics, nor specialists?
     
  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    This is a good point I’m not sure M.E. Association have fully taken on board the extent of the move away from CFS clinics and people being referred to generic community pain services instead.
     
  13. Amw66

    Amw66 Senior Member (Voting Rights)

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    We have never had any ( of either)
     
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