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Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

Discussion in 'Open Letters and Replies' started by Trish, Jan 12, 2019.

  1. Barry

    Barry Senior Member (Voting Rights)

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    Even worse if it alludes to a private collusion with the DWP.
     
    alktipping, andypants, Alvin and 6 others like this.
  2. Cheshire

    Cheshire Moderator Staff Member

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    Posts discussing IAFME, Forward ME and the roles and relationships of ME organisations have been moved to this thread.
     
  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Exactly!
     
  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Exactly again!
     
    Barry, MeSci, rvallee and 1 other person like this.
  5. Alvin

    Alvin Senior Member (Voting Rights)

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    This may merit an independent investigation :)
     
    MEMarge, andypants, Barry and 3 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited: Feb 3, 2019
  7. Trish

    Trish Moderator Staff Member

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    @Action for M.E. Please could you make available to patients the videos and any other materials AfME provides for GP and therapist training.

    As a charity working for and on behalf of people with ME I think it is your duty to allow patients to view and comment on all materials you provide that are likely to influence our care. I am sure you would not want to keep such materials hidden from the very people they are designed to serve.

    This is not a new concern. You will see that we discussed it last year here:
    Action for ME GP webinars

    Given Action for ME's welcome action of withdrawing the Toolkit, I take this as a sign that the organisation is beginning to make the changes needed to update your information to properly reflect the evidence from the FINE trial and the reanalysis of the PACE trial that show that GET and directive CBT are ineffective and should no longer be recommended.

    I hope you will continue to allow us to help you discover where your materials need to be updated.
     
  8. Action for M.E.

    Action for M.E. Established Member (Voting Rights)

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    Hello. As you know we are now reviewing the toolkit and I will continue to check this thread for feedback on it to feed into this process. Thank you everyone for sharing your views.

    In response to @DokaGirl:

    The toolkit is not for anyone severely ill, and it’s clear we need to make that much more prominent We will do this in the next edition, and highlight that many people with M.E. face considerable barriers to accessing appropriate and effective healthcare. This resource is intended to support those who have expressed a desire to address some of their goals relating to employment – this might include leaving work in the way that best supports them, or changing their hours.

    In response to @Maggie:

    I am so sorry to hear about your damaging experience. Our aim when engaging with the DWP is always to make it clear that they must be led by their clients with M.E. when it comes to supporting them, in terms of what they are able to manage, and what they are not. The first edition of the toolkit clearly didn't go far enough in this respect, and it's something we are going to address. Safeguarding the client with M.E. is our priority and I am going to make sure that the revisions we make will reflect this.

    Clare Ogden
    Head of Communications and Engagement
    Action for M.E.
     
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    @Action for M.E.

    It sounds like you might be overlooking a more central problem with the toolkit, which is that it's being promoted to people as something that can help PwME achieve their employment goals when we don't have any evidence that this is true. There are also problems with the specific content, but even if that was improved it would still be unhelpful to do anything to encourage a belief among DWP employees that they have special knowledge about how PwME can respond to employment difficulties that will improve outcomes unless we have strong evidence showing that this is the case. When the assumption that PwME could overcome many of the difficulties they face if they only adopted the right strategies has played an important role in so many of the difficulties we face it's important to not go beyond what the evidence shows about these things.

    Claimants are in a really vulnerable position within the DWP and it's very easy to make things worse while trying to help.
     
    Last edited: Feb 8, 2019
  10. Inara

    Inara Senior Member (Voting Rights)

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    Even if Action for ME means well, the DWP and others will misuse the information they received to deny people benefits. And they will be correct in a strict sense if they say in defence "Action for ME told us this is how it is; pwME just need a bit motivation to return to work", even if AfME might not have meant it that way.
    "Motivation".

    Meaning well and doing well are not the same. If I see that my well-meant actions lead to something completely different, e.g. sth. harmful, I need to correct, actively.
     
    Cheshire, inox, Lisa108 and 15 others like this.
  11. Sasha

    Sasha Senior Member (Voting Rights)

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    @Action for M.E. - I'm disappointed to again not see a response to this question, which got 13 'likes' here when I originally posted it and which I reposted again on 30 Jan. This specific issue is important to a lot of us and I'd appreciate an answer.

    Edit: Please note the 16 'likes' and counting for this current post, @Action for M.E.
     
    Last edited: Feb 11, 2019
  12. Action for M.E.

    Action for M.E. Established Member (Voting Rights)

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    Hi @Sasha. Thanks for posting the question again so I don't miss it.

    @dave30th said, in post #73: "But the document itself seems to make assumptions that many or most patients need positive support to "encourage" them to keep working and "build up their baseline"-- in fact, the notion and possibility of "building up their baseline" is repeated throughout."

    If the toolkit does make this assumption impression - that most patients need positive support to encourage them to keep working - then it's wrong, and I'm sorry about that. That's why we're updating it. We will make it clear that many people with M.E. are too ill to work, that no amount of employment support will change this, and that these people should not be in the Work-Related Support Group for ESA.

    Clare Ogden
    Head of Communications and Engagement
    Action for M.E.
     
  13. Sasha

    Sasha Senior Member (Voting Rights)

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    Thank you for responding, Clare. But I don't think you've answered my question. I said:

    So you don't say whether you accept that David's description is correct, and I can't see from your response that you accept that, if it is correct, AfME would have to contact DWP and explain that the previous advice was wrong.

    So could you please tell me:

    (1) Do you accept that David's description is correct?

    (2) If you do, will AfME contact DWP and explain that the previous advice was wrong, in order to protect patients?

    Edit: And please note again, the 27 'likes' and counting on this post. A lot of us want these questions answered. They speak directly to whether AfME puts patients first, or itself.
     
    Last edited: Feb 14, 2019
  14. dangermouse

    dangermouse Senior Member (Voting Rights)

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    @Action for M.E.

    I think this question needs answering urgently and we need to see evidence of some kind that you are contacting the DWP to tell them that your previous advice is wrong.

    What is going to happen to ME patients who undergo an assessment in the meantime? What do you suggest? Are you going to do an official statement that patients can show/send to the DWP when they try to force patients into work - because (from reading your advice in the toolkit) they believe that’s all an ME patient needs to do to get better and functional again.

    I am so disappointed that a charity that claims to advocate for vulnerable patients has done something so stupid. You do realise time is of the essence? People may be having assessments now based on your toolkit!

    You are going to cause suffering for many - act now.

    Please address this with the urgency that it deserves. Please ensure the DWP and every single assessor who has seen the toolkit knows that it is wrong and why.
     
    Sarah94, Graham, Hutan and 27 others like this.
  15. Starlight

    Starlight Established Member (Voting Rights)

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    Amazing letter, Trish . Thank you so much.
     
  16. Alvin

    Alvin Senior Member (Voting Rights)

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    Do you really expect us to believe this?
     
    Last edited: Feb 15, 2019
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  17. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    @Action for M.E. i may have missed it but I think this request for copies of the Hazel O Dowd and other GP videos hasn’t been addressed yet
     
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  18. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Thank you for taking the time to listen and respond, Clare.

    As well as answering @Sasha’s important questions, please can you tell us:

    1) Why do you believe that AfME keeps making these mistakes? Who is responsible?

    2) What measures is AfME taking to ensure that these types of mistakes are not repeated?

    [Edit: typo]
     
    Last edited: Feb 14, 2019
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  19. Amw66

    Amw66 Senior Member (Voting Rights)

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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    last point sounds very familiar.

    eta: had a look at the authors twitter, and found this book by David Frayne(Available 9th April 2019) The Work Cure
    https://www.pccs-books.co.uk/products/the-work-cure
     
    Last edited: Feb 23, 2019
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