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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. Trish

    Trish Moderator Staff Member

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    I hadn't noticed the acknowledgements:

    So apparently it was approved by all those people. Which is worrying that they saw no problem with it. Most of the people involved don't have ME. They apparently have no conception of how damaging and inappropriate this ''rehabilitation is good'' mindset is for anyone who has PEM.

    Perhaps they were looking at it through the lens of the particular project which only included people who requested the service, so were of course grateful for the help and support. And perhaps they were hoodwinked by the 'success' stories and didn't think to ask for long term follow up, or what happened to the patients who didn't find it helpful, or whether all the patients involved actually had ME, or whether a proper study had been done on the effect of the approach.

    I wonder if they were told that it was going to be used out of the context of an opt-in scheme in a CFS clinic. Transferring it to a completely different context of the DWP where jargon like rehabilitation and goal setting and solution focusing are exactly what the DWP use for the ESA WRAG group.
    Would they still think it was a good idea?
     
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  2. TiredSam

    TiredSam Moderator Staff Member

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    Nice to see them expressing enormous gratitude to those who reviewed the toolkit. Now that we've reviewed it I wonder if they'll be expressing the same enormous gratitude towards us? Unless "reviewing" in the AfME world just means nodding and saying "yes, that's great".
     
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  3. Trish

    Trish Moderator Staff Member

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    I wonder how this group is selected. Given that AfME seems to take most of its advice on how to treat ME from Hazel O'Dowd at the North Bristol CFS clinic, I wouldn't be surprised if she provided the patient and carer group too. Or perhaps they were carefully selected from among their most enthusiastic supporters.

    @phil_in_bristol or @Action for M.E., can you give us any information about how this group was selected?
     
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  4. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Last edited: Jan 16, 2019
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Once again, AfME completely misrepresent pwME. Still no mention of severity between 'mild' and 'severe', and again 'some people' for severe (although I think there is a mention of the 25%).
    No mention that 5% are very severe either.

    Just to remind AfME that as things stand with the NICE guidelines (which AfME appear to be using);
    ME/CFS is currently split into three severities. Mild, Moderate, and Severe.

    The NICE definition of Moderate is pretty rubbish as it only seems to acknowledge mobility problems:
    All the other symptoms and problems still apply and I would expect AfME to not only know that but to impart that information to others.

    By failing to explain that a large number of people fall between what is considered 'mild' and 'severe'
    they are not presenting the full picture about ME.

    Nor do they make it clear that someone who is 'mild' can get worse, and become 'moderate', or 'moderate' may become 'severe'. Or that the 'fluctuations' can go across severity levels.

    __________

    eta: I have been trying to find some statistics, so far I have only found this:

    "Around 25 per cent of people with ME/CFS will have a mild form and be able to get to school or work either part-time or fulltime, while reducing other activities.

    About 50 per cent will have a moderate to severe form of ME/CFS and not be able to get to school or work.

    Another 25 per cent will experience severe ME/CFS and have to stay at home or in bed."

    so that's 75% people with ME unable to work or go to school.......not just 'some'.

    https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
    I can't vouch for the accuracy of these figures; I shall keep looking
     
    Last edited: Jan 18, 2019
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  6. Action for M.E.

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

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    I am posting for the first time in a number of months, and would like to apologise for my absence from the forum. I have had some capacity issues in my team which forced me to be very strict about what I could and couldn't do. I realise it would have been helpful to come on here and say this, and I'm sorry for the radio silence.

    I intend to spend one hour each week from now on addressing questions and feedback about Action for M.E.'s work. This may be less frequent during busy times, such as the run up to M.E. Awareness Month.

    I will start by answering questions posted in this thread, please bear with me.

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

    Trish Moderator Staff Member

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    Thank you @Action for M.E. for coming on this thread to answer questions. Your engagement with us is appreciated.
    I have just caught up with my e-mail inbox and see I have had a reply to my letter which you have given me permission to share here:

     
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  8. Action for M.E.

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

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    Our Patient and Carer Reference Group was set up a few years ago, and we recruited by posting a news story about this on our website and social media. It has no links to any NHS services.

    Anyone with M.E. or someone who is a carer for a close family member with M.E. was invited to join, providing a broad cross-section of people closely affected by M.E. and expertise. For practical reasons, there will be no more than 50 members at any one time.

    The purpose of the group, which operates virtually, is to provide an opportunity for people with M.E. and their carers to collaborate with and influence Action for M.E.’s work. We have agreed that we will not share any information about individual members with anyone outside of the organisation.

    Since its inception, the group has inputted into the our organisational strategy, our information and support publications, and some of our awareness-raising campaigns.

    We currently not recruiting for the group but will review this in due course and I will post on here if opportunities to join become available.

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

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

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    We do not support M.E. as being suitable for treatment under IAPT. While there's a place for talking therapy, if a patient chooses, to address mental health issues arising as a consequence of living with a long-term condition, it must never replace appropriate medical care for that condition.

    We highlight our concerns with MUS on our website and this will be updated to also include reference to the IAPT programme.

    The Countess of Mar has made numerous attempts to invite IAPT leads within the government and NHS to meet with Forward M.E. so we can share our concerns. Her invitations have been declined, so we will be considering our next move when we meet again, the NICE survey having more recently taken priority.

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

    Trish Moderator Staff Member

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    Thank you @Action for M.E. for clarifying the way the patient advisory group for AfME is appointed. I did not, nor would I ask you to reveal individual names.
    ....................

    I wonder whether AfME would consider appointing, separately from this group, a second group of scientifically literate 'expert patients', doctors and scientists to examine and advise on the soundness or otherwise of the scientific evidence used to support advice materials produced by AfME.
    .........................

    This struck me particularly when I saw that the Toolkit was using the SEE ME project as its evidence. The SEE ME project was not, as I understand it, studied in the way medical treatments would be studied, with a protocol approved in advance, a control group, random allocation of patients to the two groups, objective outcome measures, long term follow up etc.
    .................

    Patients were recruited for SEE ME on an opt-in basis from a specialist ME/CFS clinic. So they were self selected and voluntary, asking for a particular type of help and the people providing that help were presumably trained and knowledgeable about ME. In that context a high proportion of the patients who took part said the project was helpful. Presumably those who asked for help with staying in or finding work felt they were healthy enough to do so, and had medical advice from the clinic that it was safe and appropriate for them to do so.

    That context is a world away from the situation of pwME applying to the DWP for state unemployment and disability benefits. Surely AfME can see that someone who has had to stop work because of ill health with ME should not be assessed on the basis that AfME says in its booklet that rehabilitation, goal setting and making plans and preparations for returning to work are appropriate and successful for pwME. And yet that is the message that AfME has provided the DWP workers with.

    My point is that AfME have made a fundamental error of evidence in using the results of the SEEME project to advise the DWP.

    It seems to me almost certain that the outcome of providing the Toolkit to DWP staff will be that more very sick people with ME will placed in the ESA WRAG group instead of the support group and made significantly sicker by them being expected to do preparation for work activities. It also seems likely that it will be harder for pwME to get PIP, as assessors will have take on board the (incorrect) message from the toolkit that pwME hold back from activity through fear and need encouragement to do more and should be trying to gradually increase their activity.

    That should be on AfME's conscience. Your action has the potential to do a lot of people a great deal of harm.

    If you will not withdraw the Toolkit booklet, I ask you, please, to at least limit its circulation to projects in a health setting and where pwME can voluntarily opt in to the support. I ask you to withdraw it from the DWP as not appropriate or evidence based in that context.
     
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  11. Trish

    Trish Moderator Staff Member

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    @Action for M.E. I just wanted to add that you may wonder why I am so obsessed with this particular situation of the booklet being promoted with the DWP. I don't doubt that you as an individual work hard on behalf of pwME and mean well, and am not accusing you of not caring. But I'm not sure you 'get it'.

    For me, it is likely to have little direct impact. I have reached the safe zone of the state pension and no longer have to convince the DWP that I am not fit to work, but I did have to go through the whole ghastly appeals process when I first had to give up work through ill health. It was a 6 month nightmare and set my health back permanently to a lower level.

    My personal fear is for my daughter, currently in the ESA support group and on highest level PIP thanks to an honest assessor. I dread her next assessment for ESA if the DWP workers involved have read the Toolkit. Putting her in the WRAG would destroy her. She would not be able to cope with an appeal so would have to come off ESA with all that implies. If I am still alive I would support her financially. If not, who knows. I doesn't bear thinking about. And she is just one of many thousands whose futures are in your hands. Do the staff and trustees of AfME want that on your consciences?
     
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  12. Barry

    Barry Senior Member (Voting Rights)

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    I fully agree with this @Action for M.E., as will most other people here I think. As I am only too well aware, there is a major difference between gaining knowledge versus gaining insights. The former can take real endeavour, but the latter needs much more - stepping back and opening heart and mind to things being different to how one has always believed them to be. As @Trish says, DWP assessments are a nightmare for PwME, as they invariably don't believe in the reality of ME being an intractable condition. Giving the DWP the impression that AfME is fully qualified to promote this toolkit in the form it is, is all they need to make life even more hellish than it is for PwME. Please step back and try to fully appreciate this. Thank you.
     
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  13. Trish

    Trish Moderator Staff Member

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    An update:
    My letter was also sent to the chair of Trustees of AfME. I have received a reply from him which, not surprisingly, is identical as far as I can see to the reply Clare Ogden sent on behalf of AfME.

    Here is my reply to him:

     
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  14. Graham

    Graham Senior Member (Voting Rights)

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    What can I add? You have said it all, clearly and eloquently. I really don't think that people in general fully appreciate the nightmare that applying for benefits is for people with ME. I'm in the same position as Trish: I dread to think what will happen to my son when we are no longer able to support him. I guess I've just got to focus on living to 100 so that he will be pensionable age.
     
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  15. MEMarge

    MEMarge Senior Member (Voting Rights)

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    My reply from the Chairman is broadly similar, but other than thanking him I am not following it up right now as I'm concentrating on emailing etc friends/family and others re Thursday debate.

    It would be a good idea to prioritise matters to be raised with AfME as Clare has kindly agreed to spend an hour a week answering our questions.
     
  16. Trish

    Trish Moderator Staff Member

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    I have been trying to find out more about the SEE ME project from the AfME website. There is very little there that I can find. No copy of any report on the project as far as I can see.

    Awards
    The project, which ran in 2015/16 was shortlisted for a couple of awards:
    https://www.actionforme.org.uk/news/employment-project-nominated-for-second-national-award/

    The first of these was from the Vocational Rehabilitation Association (VRA)
    Patron Professor Sir Mansel Aylward CB - Director of the Centre for Psychosocial and Disability Research at Cardiff University. Known to pwME as one of the chief proponents of the BPS model at the DWP.
    https://vrassociationuk.com/about/patron/

    In the VRA section on training courses is one on Fatigue and Pain management run by Vitality 360 which is Jessica Bavington's company.
    https://vrassociationuk.com/wp-cont...ent-Get-beneath-the-acronyms-2-day-course.pdf

    Here's the heading on the flyer for the course:
    https://vitality360.co.uk/about-us/

    If these are the sort of organisations AfME is working with, and the sort of training and ethos they are comfortable with, it is an even bigger problem than I realised.

    So it looks like AfME is hand in glove with the people promoting the BPS approach in the context of employment and rehabilitation. So much for stepping way from PACE. They seem to be steeped in it.

    Questions for @Action for M.E.

    1. a) How was it decided that AfME should get involved in vocational rehabilitation, and was it linked in any way with any of the VRA courses or companies?
    b) Were the people who delivered the SEE ME project trained by or committed to the biopsychosocial model and CBT/GET and rehabilitation strategies promoted by VRA or its associated companies?

    2. Please can we see a copy of the SEE ME project report with detailed breakdown of figures of how many participants achieved what end points over what time etc. Were objective criteria for success set in advance, and was there a matched control group who did not get any help? So many questions...

    3. Did your patient advisory group and your medical advisers review the project before, during and after. If so did they flag up any concerns about the whole rehabilitation / goal setting strategy being unsuitable for pwME? If so, was any notice taken of them?

    4. Who at Action for M.E. makes the decisions to set up projects like this? I'm not asking for named individuals necessarily. I mean is there a policy group of the trustees who guide the direction of AfME, or a project planning group? If so, what qualifications does it have to judge whether a project is scientifically evidence based, and new ventures like this one are properly researched using recognised scientific trial methods, protocol, ethical approval, prevention of harms etc.

    That should be enough to be getting on with from me. I hope others will add questions.
     
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  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I agree with @Trish and @Graham, you're both right to be worried.

    At one point my employer told me it was likely I would always have symptoms and so might as well carry on working anyway as stopping work wouldn't make the symptoms go away.

    I pointed out that while stopping work wouldn't cure me, it would at least help me manage my condition and limit my severity. I reminded them of my doctors report - being lucky enough to have a supportive consultant at the time.

    I had just sat through a meeting where I spelled out how badly affected I was, unable to shower regularly, bedbound some of the time, housebound the rest of it and they came out with this.

    Even though my doctor had written a lengthy letter explaining about the condition and how it affected me in particular. As far as they were concerned that wasn't what ME was like.

    The AfME Toolkit, had it been around would have just convinced them even more that they were right. I urge you, @Action for M.E., to think about how the vast majority of ME sufferers lives are really affected and how this toolkit will cause further harm and suffering to them.

    I am sorry @Action for M.E., your toolkit looks exactly like the proposals for the MUS/IAPT clinics from where I'm sitting. Even down to the fact that it seems to ignore the reality of most pwME.
     
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  18. Barry

    Barry Senior Member (Voting Rights)

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    Reading all this, I would like to be reassured that @Action for M.E. is not being exploited (possibly unconsciously, possibly not) by BPS proponents, as a low resistance conduit through which to promote BPS thinking on ME/CFS. Just get an uncomfortable feeling about some of this.
     
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  19. Action for M.E.

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

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    Thank you Trish for your questions, and for setting them out so clearly; I’ll address each in order here.

    First, I just wanted to look at the concept of vocational rehabilitation. A quick Google led me to this 2011 discussion paper which, based on a classification system used by the World Health Organization, defines vocational rehabilitation as “a multi-professional approach that is provided to individuals of working age with health-related impairments, limitations, or restrictions with work functioning and whose primary aim is to optimise work participation.”

    Optimising work participation was not the goal of the SEE M.E. project.

    Instead, its goal was to help individuals to:
    • achieve independently sustainable employment outcomes, which could include staying in work, changing the way they worked, reducing their work, or leaving work altogether
    • make measurable progress towards other vocational goals – such as training or volunteering – and/or future employment.

    In answer to your questions:

    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.

    Other than being named runner-up in its ‘Vocational Rehabilitation Initiative’ category at its 2016 Awards in 2016, the project has no links to the VRA.

    1. b) The SEE M.E. project was delivered by a highly experienced, two-person staff team: a Project Coordinator, and an Employment Adviser. Together they had considerable expertise in developing managing and delivering specialist employment support for people with long-term health conditions and disabilities. 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.

    Neither was committed to the biopsychosocial model and CBT/GET, or rehabilitation strategies promoted by VRA or its associated companies.

    2. I will ask if this is possible and come back to you by the end of next week.

    3. Our Patient and Carer Advisory Group, and our Medical Advisers, reviewed drafts of materials published as part of the project – the toolkit, and update to our existing booklets M.E. and work and An employer’s guide to M.E. – and we revised these to take their feedback into account. We did not ask them to review any other part of the project.

    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.

    With regards to evidence-base, I really want to clear up any misconceptions here about the SEE M.E. project being a piece of research based on “recognised scientific trial methods, protocol, ethical approval, prevention of harms etc.”

    The SEE M.E. project was not a clinical trial. It was a pilot employment support service, and evaluated as such, based on a theory of change model.

    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.
    The way in which project data was gathered and evaluated is one of the things we will make much clearer when we review and revise the toolkit.

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

    *SEE M.E. was delivered by Action for M.E. in partnership with the specialist M.E. clinic at North Bristol NHS Foundation Trust, and Action on Disability and Work UK, Jobcentre Plus, Remploy and Pluss.
     
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  20. dave30th

    dave30th Senior Member (Voting Rights)

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    Given the provenance of this award and its link with Professor Aylward, perhaps it might have made more sense for Action For ME to reject it on that basis, with a full explanation. Touting this award nomination on its site certainly suggests that the organization was proud of this achievement. Had Professor Sharpe or Professor White offered Action For ME an award for the SEE ME program, would they have accepted that as a positive development? I sure hope not. I don't know that simply saying we have no connection with them--while accepting the nomination--is an adequate explanation.

    Added: It raises similar questions for me as the decision to embed this program in an NHS clinic specializing in biopsychosocial strategies.
     
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