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Action for M.E. hosts DWP spotlight training

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Jan 7, 2019.

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Page 4 of 4
  1. Trish

    Trish Moderator Staff Member

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    I have been searching the Action for ME website to try to find out more about the SEE ME project this Toolkit booklet is based on.
    So far I've found this page:
    https://www.actionforme.org.uk/living-with-me/managing-work/see-me-project/
    This page includes these claims:
    And this video in which 2 workers on the project, 2 people with ME who were helped by the project and Hazel O'Dowd who runs the NHS ME/CFS clinic it was based in talk a bit about it.

    https://www.youtube.com/watch?v=k8LbFAEoE3E




    The page also gives an idea of funding and who was involved
     
    Trish, Jan 11, 2019
    #61
    Inara, MEMarge, Invisible Woman and 5 others like this.
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Jan 11, 2019
    #62
    Invisible Woman, JaneL, Esther12 and 2 others like this.
  3. chrisb

    chrisb Senior Member (Voting Rights)

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    Interesting that the one patient perspective would appear to be of someone who works for the University or the Health Trust. It is certainly disconcerting that a charity supposedly for people with ME has the concerns of clinicians and job advisors as its major priority.

    I do not doubt that there is useful work to be done in this area. That video does no provide evidence that this is it.
     
    chrisb, Jan 11, 2019
    #63
    MEMarge, Invisible Woman, JaneL and 2 others like this.
  4. Trish

    Trish Moderator Staff Member

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    I have watched the video and read the page linked above. In a way it all sounds commendable. The patients talked about being in a confusing fog of things to cope with when they got sick - getting their employer to make reasonable adjustments so they could go on working, help with filling in benefit forms, understanding their rights, etc. And O'Dowd talked about how it helped at the clinic because they could focus on the therapy and pass the patients' employment worries over to the project workers.

    So it looks like the service was being offered at the same time as patients were having the clinic therapy whatever that was - CBT, I assume.

    If this were a service based in the health service, I can see the benefits of it if handled sensitively and realistically and the advisors keep their advice within the bounds of helping people get their rights either within their employment if still able to work, or to state benefits if not able to work.

    The problem comes when, on the basis of seeing 120 patients through their system presumably for the brief period they are also undergoing O'Dowd's therapy, they decide this is appropriate for all pwME except a few severe patients, and add not only advice on rights, but inaccurate and harmful advice on their version of pacing, goal setting, increasing activity and rehabilitation.

    And they put this in a booklet and give it to DWP advisors. :(
     
    Trish, Jan 11, 2019
    #64
    dangermouse, DokaGirl, Amw66 and 9 others like this.
  5. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    My impression of SEE M.E is that it was an advertisement to the DWP and contractors. The main people involved all seem to be biased towards the DWP philosophy of the work cure.
     
    Luther Blissett, Jan 11, 2019
    #65
    Inara, MEMarge, Invisible Woman and 8 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Jan 11, 2019
    #66
    Invisible Woman and ladycatlover like this.
  7. ArtStu

    ArtStu Established Member (Voting Rights)

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    I don't understand the maths of that, so if they spent 40 hours a week on it they're earning £480,000 a year :jawdrop:
     
    ArtStu, Jan 11, 2019
    #67
    MEMarge and Invisible Woman like this.
  8. Trish

    Trish Moderator Staff Member

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    More than one clinician? Or clinician only spends a few hours a week with clients? I have no idea how much CBT therapists are paid.
     
    Trish, Jan 11, 2019
    #68
    Invisible Woman likes this.
  9. JaneL

    JaneL Senior Member (Voting Rights)

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    These people are miracle workers! From the “Get Stonger” section of their website:

    (My bold)

    vitality
    noun
    the state of being strong and active; energy.
     
    JaneL, Jan 11, 2019
    #69
    Luther Blissett, Chezboo, Andy and 6 others like this.
  10. Cheshire

    Cheshire Moderator Staff Member

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    Posts related to AfME "This is M.E." booklet have been moved to this dedicated thread.
     
    Cheshire, Jan 11, 2019
    #70
    JaneL, Invisible Woman, Andy and 3 others like this.
  11. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    I just watched this heap of s**t. Basically it's unwatchable with the bloody carp (anagram) background music going on. I was constantly distracted by that music, it was TOO LOUD and I couldn't take in the talk stuff. Though what I saw of the talk stuff it wasn't worth listening to anyway. :rolleyes: As to O'Dowd, I'd better not say anything actually other than IRRITATING.
     
    ladycatlover, Jan 11, 2019
    #71
    Luther Blissett, JemPD, EzzieD and 4 others like this.
  12. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    OH just commented that if Gwyneth Paltrow (Goop) got ME she'd join AfME rather than MEA.
     
    ladycatlover, Jan 11, 2019
    #72
    Cheshire, JemPD, EzzieD and 4 others like this.
  13. Trish

    Trish Moderator Staff Member

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    I have just completed writing and sent an open letter to the trustees and staff of Action for ME detailing my concerns about the 'Toolkit for Professionals' document. I have posted my letter here.
     
    Trish, Jan 12, 2019
    #73
    Lisa108, dangermouse, JemPD and 11 others like this.
  14. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    The CCC Overview indicates about 5 percent of pwME recover, so where they get the idea very ill people will do well with rehab is baffling.

    Also this rehab, and support stuff is just coercive CBT. Along with increasing activities, GET, as others have said, this is GET/CBT in sheep's clothing.

    Guess this group is doing this for money?

    Good letter @Trish. Hope they rescind the toolkit.
     
    DokaGirl, Jan 13, 2019
    #74
    Luther Blissett, dangermouse, JemPD and 8 others like this.
  15. chrisb

    chrisb Senior Member (Voting Rights)

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    Does any documentation presented to patients about this disclose the source of funding for Afme's intervention? There does seem to be a potential for failing to adequately disclose any COI. Charities have salaries and bills to pay.
     
    chrisb, Jan 13, 2019
    #75
    Luther Blissett, JemPD, DokaGirl and 6 others like this.
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I looked at the video. It is empty of any informative content. It seems to be just some people trying to persuade us that they are doing a great job - yet they have nothing to say that a robot could not make up. I think it is a great pity if a charity is supporting this. It is a cop out.
     
    Jonathan Edwards, Jan 13, 2019
    #76
    Luther Blissett, dangermouse, TrixieStix and 20 others like this.
  17. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    There is also a lot of mention of "getting confidence back". ME also seems to be portrayed in this document as low self esteem. So apparently no biomedical abnormalities, as biomedicine has come to know, just a bunch of people who need a confidence boost!
     
    DokaGirl, Jan 13, 2019
    #77
    Luther Blissett, MEMarge, dangermouse and 7 others like this.
  18. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    If a charity has a tax number, then it's my understanding their books are open to public scrutiny. Charities may have to publish their income and expenses online. That's how it seems to be done.
     
    DokaGirl, Jan 13, 2019
    #78
    JemPD likes this.
  19. Trish

    Trish Moderator Staff Member

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    Trish, Jan 18, 2019
    #79
    MEMarge likes this.
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