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Ideas to try to improve care of ME/CFS patients locally?

Discussion in 'Advocacy Projects and Campaigns' started by janice, Feb 23, 2018.

  1. janice

    janice Senior Member (Voting Rights)

    After the PACE debate on Tuesday which gave me so much hope for improvements, I got to wonder what I can maybe do.

    So I've got an appointment with my MP in a month and am compiling a list of my experiences of lack of biomedical care locally over last years. Work in progress.

    Then I got to think about how the local general hospital consultants ( cardiologists, neurologists and ophthalmologists too in my case)seem uninformed and uninterested in ME/CFS as well as my GP.

    Does anyone know best route to question local healthcare provision?

    I had a vague memory of PALS in hospitals who try to prevent formal complaints being made but trying to solve the problems that patients raise. Could that be used?

    Could CEO of general hospitals be contacted to raise their awareness about shortfalls and recent progress in debunking PACE and NICE?

    Any and all suggestions would be v useful.
    MSEsperanza, Barry, Hutan and 6 others like this.
  2. Esther12

    Esther12 Senior Member (Voting Rights)

    The trouble is that we're lacking in effective treatments for people to provide, so it can be understandable that generalists do not think it is worth their time learning about ME/CFS. Then on top of that understandable problem, there are also problems with the prejudice and quackery that has surrounded ME/CFS over the last few decades. It can be difficult to tease the two apart.

    I think that it's best to focus on trying to limit the prejudice and quackery at the moment (eg PACE), in the hope that this will lead to more general improvements,
    Milo, Barry, MEMarge and 5 others like this.
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Would the ME Association purple book be helpful in this context?

    I got a copy intending to then hand it on to my GP, but have not got round to it yet. I must admit I find learning the new vocabulary to understand the biological systems sufficiently to adequately understand and summarise possible areas of medical intervention very much a struggle. And this is with a biology A Level, a neuropsychology background and some training in anatomy and neurology.
    Barry, MEMarge, Indigophoton and 3 others like this.
  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    I have not had any direct contact with PALs but no a couple of people who have. Based on their experience PALs basically tried to discourage them from taking action -even though one of them had a daughter harmed after an elective surgery. They supported the establishment all the way.
    Indigophoton and Esther12 like this.
  5. janice

    janice Senior Member (Voting Rights)

    I knew I'd get sensible and useful feedback.

    I've already tried giving the MEA Purple booklet to my GP practice but made no difference.. I couldn't make them read it or use the information.

    I like the focus on PACE point from @ Esther12
    Milo, Esther12 and Invisible Woman like this.

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