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

[Trish]

Thank you Clare for your detailed response. I appreciate it.

1. a) We were hearing – and continue to hear – from people with M.E. who tell us that they, their employer and the people supporting them need more information about how to more effectively manage staying in work, returning to work or leaving work well. The SEE M.E. project was developed in response to this, in line with our organisational strategy at the time.

I understand this and do not object to the principle of AfME providing materials and support to individuals seeking help with employment and benefit issues.

What I do not understand is how AfME:

a) managed to produce a document so geared to processes like 'rehabilitation' and 'goal setting' that included planned increases in activity, which is directly contrary to pacing and potentially harmful.

b) thought it in any way appropriate to include any suggestion that pwME need to be encouraged to do more.

c) barely mentioned the fact that some pwME are unable to work, let alone quoting the generally recognised figure of about 75% being too sick to work. (edit: please correct me if I am wrong with this - I am working on memory here, I don't have energy to re-read the whole document).

d) thought the findings of this project were in any way relevant to or appropriate to provide to DWP staff where they will be used in a context where pwME are not opting in and asking for help, but are being assessed for benefits and potentially on the 'advice' in the Toolkit, forced into categories where they are directed to undertake preparation for work activities and to seek work when they are too sick.

 

[Jonathan Edwards]

I share @Trish's concerns.

The reality is that this is 'research-lite' - which is now a popular way to get information to persuade people of something without using proper methods.

If
The evaluators:

• measured the impact of the project intervention for clients and partners*
• collected quantitative and qualitative data from clients, employers, trade unions, clinicians and other partners*, before, during and after the pilot
• captured evidence through case studies, service user interviews, staff interviews and partner* interviews.

Then it was a trial. But a trial with inadequate methodology. People often hide behind the terms 'audit' and 'service evaluation' giving the impression they are drawing no conclusions about cause and effect. But 'measuring impact' assumes cause and effect. Service evaluation is laudable but to use it to generate a 'toolkit' is worrying.

The reality is that these days everyone is selling something. Maybe it was always the reality but the justification of soft studies for selling based on 'real-life data' has increased, as we have seen on other threads.

To be honest I have not looked at the detailed content again recently butjust the word 'toolkit' is enough to make me sceptical.

 

[TiredSam]

1. a) We were hearing – and continue to hear – from people with M.E. who tell us that they, their employer and the people supporting them need more information about how to more effectively manage staying in work, returning to work or leaving work well. The SEE M.E. project was developed in response to this, in line with our organisational strategy at the time.

At my self-help group we regularly have new members who want to know how to continue to work, how to get better and be able to do more. It's what we all wanted at the beginning. Being confronted by the hard facts of this illness (it's not going to get better and you need to cut down your activities and reduce / stop work if you are to have any chance of managing it and minimising the damage) is not easy to accept, and it is not easy information to give. But indulging people's wishes with inaccurate information and false hope is not doing them any favours. Telling them that they will be able to gradually increase their activity is harmful. Many may want to believe it and may want to try it. They need warning that that's how many of us got much worse at the beginning, and that the biggest regret of many ME sufferers is that they didn't let go of that illusion sooner, before trying to build up again slowly (which is intuitive and the right advice for many illnesses) made them permanently worse.

 

[NelliePledge]

At my self-help group we regularly have new members who want to know how to continue to work, how to get better and be able to do more. It's what we all wanted at the beginning. Being confronted by the hard facts of this illness (it's not going to get better and you need to cut down your activities and reduce / stop work if you are to have any chance of managing it and minimising the damage) is not easy to accept, and it is not easy information to give. But indulging people's wishes with inaccurate information and false hope is not doing them any favours. Telling them that they will be able to gradually increase their activity is harmful. Many may want to believe it and may want to try it. They need warning that that's how many of us got much worse at the beginning, and that the biggest regret of many ME sufferers is that they didn't let go of that illusion sooner, before trying to build up again slowly (which is intuitive and the right advice for many illnesses) made them permantly worse.

Yes @TiredSam this was me from October 2015 until I saw a Dr privately in December 2017 who knew what he was talking about and said I should take early retirement. In 2015/16 i used AFME booklet for employers and Pacing together with being steered by occupational health to phased return which failed in 2017 as unsustainable even at 15 hours a week. I earned less a year working part time than I get from my Ill health pension. Apologies if I’ve already made this point on this thread. It is relevant every time we discuss AFME materials.

 

[dave30th]

I understand this and do not object to the principle of AfME providing materials and support to individuals seeking help with employment and benefit issues.

What I do not understand is how AfME:

a) managed to produce a document so geared to processes like 'rehabilitation' and 'goal setting' that included planned increases in activity, which is directly contrary to pacing and potentially harmful.

b) thought it in any way appropriate to include any suggestion that pwME need to be encouraged to do more.

c) barely mentioned the fact that some pwME are unable to work, let alone quoting the generally recognised figure of about 75% being too sick to work. (edit: please correct me if I am wrong with this - I am working on memory here, I don't have energy to re-read the whole document).

d) thought the findings of this project were in any way relevant to or appropriate to provide to DWP staff where they will be used in a context where pwME are not opting in and asking for help, but are being assessed for benefits and potentially on the 'advice' in the Toolkit, forced into categories where they are directed to undertake preparation for work activities and to seek work when they are too sick.

Hi, Clare @Action for M.E.--I agree completely with these points from Trish. And I'd like to know what follow-up there has been. Does anyone have any idea how this tool-kit has actually been used by DWP? It is very easy to imagine this notion of encouragement fitting into the preconceived ideas of DWP assessors about people with ME and therefore having a negative impact on patients' experiences.

Trish's point d) is especially worrisome. It is an axiom of research that results derived from one group should not be willy-nilly applied to those in different circumstances. Those who would opt in to such a program cannot be assumed to be the same as those who would not opt in. It is illogical and anti-scientific to think it is appropriate to transform results garnered from an opt-in program into generalized advice for DWP to deal with anyone with this illness.

Given that, I agree with Trish that the document should be withdrawn. It essentially ignores the severely disabled and the many non-severely disabled who are simply unable to work. The tool-kit implies that the best way to help people is to offer positive encouragement. Whatever the intent, it casts a BPS frame over the illness. It should be tabled completely until an acceptable version is written. There is no reason to leave this document in place during the many months or however long it will take to review and revise.

I would further urge Action For ME to remove the VRA award nomination, with an explanation. Bragging about it suggests a certain tone-deafness on the organization's part.

Added: Time permitting, I will write more about this situation next week.

 

[Action for M.E.]

Hello - we've updated our SEE M.E. page this morning to address some of the concerns being raised. You can read our statement below and also at https://www.actionforme.org.uk/see-me

My team and I are focusing on the debate now for the rest of the day and I will be back on the forum next week. Many thanks for your feedback.

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

We understand that some concerns are being raised about the aims of the SEE M.E. project and the content of the SEE M.E. toolkit. We would like to address these here.

The SEE M.E. project was a pilot employment support service, which aimed to support people with M.E. to achieve their employment goals.

SEE M.E. clients could self-refer, or be referred by a clinician or other organisation. Participation was entirely voluntary. Every client referred took part in an assessment to determine primarily whether or not they were well enough to engage with the service; whether their goals were employment related; and whether the service could address their needs – the alternative being to signpost or refer them to alternative sources of support.

The SEE M.E. project was not a clinical trial - we did not set out to test treatment approaches. It was delivered by an experienced Project Coordinator and Employment Advisor, who offered specialist employment support, not clinical advice. Both had an excellent understanding of M.E., born of personal experience, particularly in relation to the employment support needs of people with M.E., enabling them to carry out in-depth case work where required.

The SEE M.E. toolkit is not a clinical toolkit, and should absolutely not be used to develop a treatment or symptom management plan for anyone with M.E. Neither is it intended to replace appropriate medical care. Its purpose is to support professionals to better understand the fluctuating nature of M.E., and to always led by their client with M.E. when discussing their employment goals, which might be staying in work, changing the way they work, reducing their work, or leaving work altogether.

The SEE M.E. toolkit has been shared with DWP work coaches, many of whom are supporting people with long-term conditions, with a clear message that it should not be used to make assumptions about what an individual with M.E. is or is not able to do. It has NOT been shared with welfare benefits assessors, and we would never support it being used in this context.

We appreciate the constructive feedback we have received about how we can make this much clearer, and are reviewing the toolkit as a priority in our current ongoing content review. The updated version will be shared here as soon as we are able to do so.

 

[ladycatlover]

4. We do have a Policy Group, made up of staff members, Trustees, and volunteers. Its role is to provide a steer for the charity’s policy, influencing and communications work, not decide what projects we do and don’t take forward. Those sort of operational decisions sit with the staff team, overseen by the Chief Executive.

(my bold)

Have to say I'm not terribly happy that it's only staff and CE who decide on "projects". Members and especially Trustees should be involved. Though from what little I know AfME have never been a democratic organisation.

 

[Sly Saint]

Its purpose is to support professionals to better understand the fluctuating nature of M.E.

which imo it fails miserably to do

 

[Robert 1973]

My team and I are focusing on the debate now for the rest of the day and I will be back on the forum next week. Many thanks for your feedback.

Thanks for taking the time to respond, Claire.

There would appear to be some irony in the fact that AfME are calling for the suspension of CBT and GET (at least, I am assuming AfME is supporting the motion in today’s Parliamentary debate – I’ve not checked) and yet it appears to be unwilling to suspend its own dodgy advice pending a review.

 

[NelliePledge]

Splitting hairs distinguishing between “work coaches”and “benefits advisers” - I’ve only a sketchy understanding but I find it impossible to believe that work coaches aren’t involved in the processes whereby people on benefits can be sanctioned for non compliance for what DWP is demanding of them.

 

[Barry]

The SEE M.E. project was not a clinical trial

The SEE M.E. toolkit is not a clinical toolkit, and should absolutely not be used to develop a treatment or symptom management plan

The SEE M.E. toolkit has been shared with DWP work coaches, many of whom are supporting people with long-term conditions, with a clear message that it should not be used to make assumptions about what an individual with M.E. is or is not able to do.

So what do DWP work coaches do if it does not include any form of symptom management, given the aim is getting people back to work? And no matter how clear the message may be, I very much doubt the DWP gives a fig about that. pwME will still be getting coerced into doing what they cannot and should not, and reports from these coaching sessions must presumably get observed by others and influence decisions in some way.

 

[dave30th]

The SEE M.E. toolkit has been shared with DWP work coaches, many of whom are supporting people with long-term conditions, with a clear message that it should not be used to make assumptions about what an individual with M.E. is or is not able to do.

Hi, Clare--thanks for the response. 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. So I don't really see how it would be possible simultaneously for Action for ME to send a "clear message" that such assumptions are unwarranted. Again, it has been written as if it these BPS-like strategies can be applied to very many or most patients. It would not be at all surprising if that is how it has been understood by DWP professionals.

Praise from those steeped in this paradigm, like the Aylward's VRA--whose previous awardees included PACE author Jessica Bavington--should have raised some alarms, I think.

I would be interested in seeing what members of your patient/carer network who reviewed this material had to say. Did no one raise these concerns? If not, then that's a significant problem. If so, then I guess their comments didn't create much of an impression.

I recognize this was developed 2+ years ago, when the anti-PACE movement was in an earlier phase.
But we are where we are now. This document should not have been distributed in this form.

Added: Just to be clear, the toolkit does include statements about tailoring everything to the individual, the patient knows best about their own experience, and so on. But the overall tone and the assumptions about gradual improvements--as if that's the most common way things happen, as long as there is support, understanding, etc--create a stronger impression.

 

[Sasha]

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.

@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.?

 

[JaneL]

Splitting hairs distinguishing between “work coaches”and “benefits advisers” - I’ve only a sketchy understanding but I find it impossible to believe that work coaches aren’t involved in the processes whereby people on benefits can be sanctioned for non compliance for what DWP is demanding of them.

Your intuition is correct. “Work coaches” do play an important role in beginning the sanctioning process. From the UK parliament website:

Work coaches decide whether to refer someone for a sanction, then an independent decision-maker considers whether to impose one.

https://publications.parliament.uk/pa/cm201719/cmselect/cmworpen/955/95509.htm

 

[Andy]

It struck me again, during the Parliamentary debate on ME today, watching all the various posts on Twitter, that AfME are happy to share quotes of other people describing how disabling ME can be, yet when it comes to the advice that they are giving to staff in the benefits system on how to deal with pwME it essentially boils down to "encourage them a bit, they might need to take it a bit slow at first". I just can't apply any logic in working out how the two things make sense coming from the one organisation that is meant to be representing all of us patients.

 

[Suffolkres]

The info on ME and Cfs needs taking down so Government and agencies are working and singing from the same hymn sheet.
This guidance is NOT FIT FOR PURPOSE and should have been taken down in 2011.
Dr Ira Madan at KIng's should do this!

Ira Madan
consultant occupational physician at House of Commons..........


https://www.nhshealthatwork.co.uk/chronic-fatigue.asp

New updated website but with same old, same old......... programmed for review for 2011 and effectively left standing for 8 long years......

NHS Health at Work January bulletin

Happy new year to all. Have a look at our refreshed website and see all the latest updates and member discounts in this month's bulletin. ( groan....)


NHS Health at Work represents occupational health teams working in the NHS and supports the Government's approach to health and work.

Introducing NHS Health at Work
NHS Health at Work is the network of occupational health teams dedicated to ensuring that the NHS has a healthy, motivated workforce that is able to provide the best possible patient care.

The NHS is the largest employer in the UK and aims to provide an exemplary occupational health service that is improving the health and well being of over 1.3 million NHS staff. We are working together to drive up the quality of our services in the NHS.

NHS Health at Work influences and advises Government and other bodies about occupational health in the NHS. We also provide a gateway for businesses in the broader community who are seeking occupational health advice and support.

 

[ladycatlover]

the one organisation that is meant to be representing all of us patients.

It's not the one organisation - we have others.

 

[InfiniteRubix]

Honest question to all you more seasoned MEers than me.... It is a loaded question, because I have a view about A4ME, but I'm wondering what company they keep in terms of other ME organisations...

Is there any other charity that has such a dubious record and/or dubious reasoning that persists in practice (regardless of apologies)?

Are there any other similar charities that are as well funded, or as corporately slick and professional in terms of their output, as A4ME?

Can anyone compare and contrast their funding base versus the ME Association, ME Action and others? i.e. are they better funded and funded by whom? I ask this with cynical presumptions at heart, based on my very cut and thrust previous existence.

Maybe I am overly cynical, but gut tells me some forensic analysis is needed...

 

[Trish]

I think AfME is a charity that relies on fundraising, donations and membership fees.
Looking at their staff list, of about 19 staff, 6 are in the fundraising team.
https://www.actionforme.org.uk/about-us/our-staff-team/

 

[TiredSam]

Just to be clear, the toolkit does include statements about tailoring everything to the individual, the patient knows best about their own experience, and so on.

That line is starting to look like a bit of ubiquitous fluff which Drs, therapists and anyone else who reads it skims over on their way to get to the meat of whatever it is they're reading. "Yeah yeah, but where does it say what I actually have to do ...". I certainly glaze over whenever I read / hear it these days. It's a bit like the health warning on a packet of cigarettes, it's alway there and and you may occasionally notice it when opening a packet, but does it stop people smoking? Does it even make them stop and think? Or do they just take out a cigarette and light it regardless?