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

@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.
 
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:

DokaGirl said:
Why would an agency (AfME) expend a lot of time and money developing a get back to work manual for such severely ill people in the first place? Of course, pwME need help, we are not a waste of time and money. However, a get back to work manual presumes people have EFFECTIVE medical treatment and support, and are physically, and cognitively ready to work. A giant step has been missed here. This whole idea looks like work as therapy. Work will cure you.
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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:

Maggie said:
@Action for M.E. please bear in mind that I do not feel you understand the mindset of the DWP or the policies under which they operate. Or that the Toolkit is written from the right perspective. That we ME patients want to get back to work should be a given, we do not need any encouragement whatsoever to work towards that. What we need is for DWP etc to understand our difficulties in achieving this goal and the simple fact that most of us have no chance of it whatsoever. If you must write a Toolkit please do so from the point of view of safeguarding the patient/client. And with stern warnings for the DWP of what harm they can very easily cause if the put any pressure on us at all. And of course with the intention of informing DWP that the vast majority of us should not even be in the WRAG in the first place.
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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.
 
@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.
 
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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.
 
@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.

Sasha said:
@Action for M.E. - I'm not well enough currently to read much and so haven't read the original document and have been able only to scan Trish's complaint and David's article. But if David is describing this correctly and the document has already gone out to DWP then it would not enough for AfME to just withdraw the document from its portfolio and replace it - AfME would have to contact DWP and explain that the previous advice was wrong. That would be the only possible way to protect patients.

To do otherwise would be to save AfME's face at the expense of patients and that's the opposite of what an ME charity is for.

Do you accept that David's description is correct, @Action for M.E.?
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Edit: Please note the 16 'likes' and counting for this current post, @Action for M.E.
 
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Sasha said:
@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.
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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.
 
Action for M.E. said:
@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.
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Thank you for responding, Clare. But I don't think you've answered my question. I said:

Sasha said:
But if David is describing this correctly and the document has already gone out to DWP then it would not enough for AfME to just withdraw the document from its portfolio and replace it - AfME would have to contact DWP and explain that the previous advice was wrong. That would be the only possible way to protect patients.

To do otherwise would be to save AfME's face at the expense of patients and that's the opposite of what an ME charity is for.

Do you accept that David's description is correct, @Action for M.E.?
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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.
 
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@Action for M.E.

Sasha said:
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?
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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.
 
Trish said:
@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.
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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
 
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]
 
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Amw66 said:
Interesting article. Perhaps explains DWP context well
https://mh.bmj.com/content/41/1/40
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This paper describes the coercive and punitive nature of many psycho-policy interventions and considers the implications of psycho-policy for the disadvantaged and excluded populations who are its primary targets
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However, there has been a marked silence about the use and misuse of psychology in public policy on many fronts: especially, the role of psychological institutions and professions in workfare and in the emerging employment services industry; and the coercive and punitive nature of many psycho-policy interventions.
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Psycho-compulsion, defined as the imposition of psychological explanations for unemployment, together with mandatory activities intended to modify beliefs, attitude, disposition or personality, has become a more and more central feature of activating the unemployed
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The A4e Engage Module states: “students will learn how to develop the right mindset which will appeal to employers” (other elements of this module are assertiveness, confidence, benefits of work, motivation and enhance your mood).
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"I duly attended the offices of A4e and (along with 6 other “customers”) was treated to INSPIRE. This turned out to be a session on Neuro Linguistic Programming (NLP) run by an outside company claiming to be “Master Practitioners in NLP”. I was “mandated” to attend under threat of loss of benefits and was effectively unable to leave the session because of the same ever present threat.83"
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In a scheme recently announced, claimants will undergo interviews to assess whether they have a ‘psychological resistance’ to work, along with attitude profiling to judge whether they are ‘bewildered, despondent or determined’.79 Those deemed ‘less mentally fit’ will be subject to more intensive coaching, while those who are ‘optimistic’—such as graduates or those who have recently been made redundant—can be placed on less rigorous regimes
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Above all, psychology is implicated in what amounts to a ‘substitution of outcomes’, where the modification of psychological attributes stands in for delivering actual improvements in household income or increasing the availability of real paid work.
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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
The contributors to this book write from the premise that a good job might carry particular health benefits, but the blanket claim that ‘work is good for you’ cannot be anything but ideological. This is particularly troubling in a context where the UK Conservative government have moved to make employment a key ‘health outcome’, and where the palpable stress and insecurity of modern work tends to be met with individualising ‘wellness’ programs, rather than more thoroughgoing attempts to create a more just and healthy social system.
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https://www.pccs-books.co.uk/products/the-work-cure
 
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