Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

The MEA have been (sort of) monitoring compliance of services with the 'new' NICE guidelines, or at least getting some of the online content corrected.
But maybe it's time the charities got together and did a repeat or enhanced version of the survey #MEAction did on ME services in the UK in 2019.
Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose' | Science for ME (s4me.info)

just for comparison BACME also did one around the same time
BACME CFS/ME National Services Survey Feb 2018 (Report Published March 2019) | Science for ME (s4me.info)

Things have changed a lot with the 'arrival' of Long Covid so it would be good to have a better picture of what is currently going on, particularly given the current state of the NHS.
The Charities could then put their heads together (maybe a first but you never know..) and come up with some kind of plan to prioritise what services should look like. This might need to include looking at the long covid guidelines (if there are any, I haven't checked and have lost track of what is going on with the amalgamation of clinics).
 
I think for a survey to be accurate it needs some in depth digging into what services are actually doing. If it's just a questionnaire sent to the local funding bodies, or to the clnics themselves, they will probably just tick the boxes saying they are NICE compliant, or not bother to fill them in.
 
Kitty said:
Exactly. And if you're an advocate for pwME and there isn't anyone to work with, you could choose to say so rather than trying to make do with what looks like the next best thing.
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In theory, yes, but if you work in an organisation that rightly considers it is obliged to have trustees with relevant skills relating to professional aspects and always has to have some trustees to fulfil its obligations you may be a bit stuck. You would need to have trustees happy to admit they weren't up to the job yet prepared to continue as if they did. It gets a bit tricky.

Fortunately, it looks as if common sense can prevail at times.
 
Andy said:
My first quote was from the video.

It is just a reminder to me that it isn't possible to please all of the people all of the time.
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Of course it’s not, but I think you’re taking it personally because of your involvement. I’m sure if you can check the log of the comments you will find that one.

That doesn’t detract from my point that consideration should be given to a style guide, and focussed communications which don’t make unnecessary demands on pwME energy.
 
Jonathan Edwards said:
I can understand the problem for Sonya and maybe for the charity as a whole, whoever that actually consists of.

There really aren't many people to turn to. when it comes to people actually involved in ME/CFS service provision there is hardly anyone that seems to be up to speed on NICE 2021. In theory there are one or two but with Luis nacu in Canada, apart from David Strain, it is hard to think of physicians to advise - and these are issues for physicians, not rehab therapists.
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Right. Shame.

Still…

When someone asks for some sunglasses, explaining to you that the glare is hurting their eyes, and you don’t have any you wouldn’t necessarily be being helpful if you said “No, sorry about that, I don’t. Don’t worry though I’ll not let you go without. Here have some of this instead.” Whilst you enthusiastically squirt a full bottle of sunscreen into each of their sore eyes.
 
Ash said:
Right. Shame.

Still…

When someone asks for some sunglasses, explaining to you that the glare is hurting their eyes, and you don’t have any you wouldn’t necessarily be being helpful if you said “No, sorry about that, I don’t. Don’t worry though I’ll not let you go without. Here have some of this instead.” Whilst you enthusiastically squirt a full bottle of sunscreen into each of their sore eyes.
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I feel like Gladwell’s involvement is a relic of an earlier time. Things have changed.
 
Kitty said:
Exactly. And if you're an advocate for pwME and there isn't anyone to work with, you could choose to say so rather than trying to make do with what looks like the next best thing.

In theory, one of the charities could put out a call for input from physicians interested in guiding specialist or GP services toward full implementation of the 2021 guideline. That would both highlight that implementation still hasn't happened yet, and offer an opportunity to anyone who isn't known to them. And if all they get is tumbleweeds, it adds power to their argument that the NHS is still failing pwME.

Given the existence of BACME it would be provocative, but we could do with a bit more backbone.
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Action for ME's AGM is next Friday: 13th September.

"All are welcome"

To attend, register through their website: https://www.actionforme.org.uk/news/2024-annual-general-meeting/

PeterW said:
Hi All -

Action for ME's AGM is next Friday: 13th September.

"All are welcome"

To attend, register through their website: https://www.actionforme.org.uk/news/2024-annual-general-meeting/

The current invitation does not include documents which they are presenting: Annual report and accounts.

I have messaged the chair to request that these are made available urgently (they are supposed to be distributed with the invite... I think there is some confusion there about requirements).
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Post copied to the AfME news thread. Go there to discuss the meeting.
 
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I have just sent the following reply to Sonya Chowdhury. I decided to make it a personal reply rather than trying to get agreement from all the signatories to the original letter. It's taken longer than I intended as I've been somewhat crashed for the last week.

Dear Sonya,

Thank you for your reply. I very much appreciate the thoughtful, speedy and sensible response regarding withdrawal of the document, and dissociation of AfME from it. From reaction on the forum, many others have appreciated your openness in making the response public and apologising to people with ME/CFS

I look forward to further news on AfME consultation over other AfME materials. In forum discussion it has been suggested that AfME could announce it is reviewing particular materials with a view to updating, and inviting the wider ME/CFS community to discuss openly and publicly via social media channels you set up, as well as making individual comments privately.

I would suggest also that you consider withdrawing, or at least marking clearly as in need of update, all AfME materials that have been produced in conjunction with clinicians from the Bristol Clinic and/or members of BACME, regardless of whether they have already been updated since the 2021 NICE guideline was published.

AfME is not the only source available to pwME for material to help them negotiate life with ME/CFS. Dare I suggest more co-operation, for example, between AfME and the MEA which has a wide range of useful materials written by Dr Charles Shepherd, some of which might be endorsed by AfME, with MEA agreement, and linked from your website, rather than both organisations needing to produce versions of the same thing. Both AfME and the MEA do some valuable work, and are criticised for other aspects of their work. I think many pwME in the UK would value greater coordination between the two organisations so we have the best of both, and less unnecessary duplication.

I find it troubling that AfME, in presenting the now withdrawn document, reported there had been input from AfME staff. It was not clear what the nature of that input was, but the fact that they did not spot what seemed obvious to our members indicates a need for staff training on the finer details of the NICE guideline and a willingness to ask questions of a wide range of pwME to help them understand more about living with ME/CFS. Giving your staff time, as part of their contract each week, to spend a few hours reading forum discussions and other social media where pwME share their experiences, joining in to ask questions, and reading and watching selected resources such as the Dialogues for an Neglected Illness videos, could add value to your work and help to avoid mistakes such as this incident demonstrated. AfME staff and trustees are welcome to join S4ME. I'm sure our members would be happy to point to resources and threads worth AfME staff following, and to answer their questions.

Yours sincerely,

Trish Davis
 
Trish said:
I think for a survey to be accurate it needs some in depth digging into what services are actually doing. If it's just a questionnaire sent to the local funding bodies, or to the clnics themselves, they will probably just tick the boxes saying they are NICE compliant, or not bother to fill them in.
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The survey would need to be completed by pwME (their carers or families), as the MEAction one was.
The aim would be for it to be publicised in NHS clinics as well as by charities and other ME orgs.
 
Trish said:
I have just sent the following reply to Sonya Chowdhury. I decided to make it a personal reply rather than trying to get agreement from all the signatories to the original letter. It's taken longer than I intended as I've been somewhat crashed for the last week.

Dear Sonya,

Thank you for your reply. I very much appreciate the thoughtful, speedy and sensible response regarding withdrawal of the document, and dissociation of AfME from it. From reaction on the forum, many others have appreciated your openness in making the response public and apologising to people with ME/CFS

I look forward to further news on AfME consultation over other AfME materials. In forum discussion it has been suggested that AfME could announce it is reviewing particular materials with a view to updating, and inviting the wider ME/CFS community to discuss openly and publicly via social media channels you set up, as well as making individual comments privately.

I would suggest also that you consider withdrawing, or at least marking clearly as in need of update, all AfME materials that have been produced in conjunction with clinicians from the Bristol Clinic and/or members of BACME, regardless of whether they have already been updated since the 2021 NICE guideline was published.

AfME is not the only source available to pwME for material to help them negotiate life with ME/CFS. Dare I suggest more co-operation, for example, between AfME and the MEA which has a wide range of useful materials written by Dr Charles Shepherd, some of which might be endorsed by AfME, with MEA agreement, and linked from your website, rather than both organisations needing to produce versions of the same thing. Both AfME and the MEA do some valuable work, and are criticised for other aspects of their work. I think many pwME in the UK would value greater coordination between the two organisations so we have the best of both, and less unnecessary duplication.

I find it troubling that AfME, in presenting the now withdrawn document, reported there had been input from AfME staff. It was not clear what the nature of that input was, but the fact that they did not spot what seemed obvious to our members indicates a need for staff training on the finer details of the NICE guideline and a willingness to ask questions of a wide range of pwME to help them understand more about living with ME/CFS. Giving your staff time, as part of their contract each week, to spend a few hours reading forum discussions and other social media where pwME share their experiences, joining in to ask questions, and reading and watching selected resources such as the Dialogues for an Neglected Illness videos, could add value to your work and help to avoid mistakes such as this incident demonstrated. AfME staff and trustees are welcome to join S4ME. I'm sure our members would be happy to point to resources and threads worth AfME staff following, and to answer their questions.

Yours sincerely,

Trish Davis
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I had the following reply from Sonya on 14th September. Sorry for not posting it earlier. I will reply briefly thanking her and explaining I don't have capacity to contribute further to AfME's materials but others on the forum may be interested.

Dear Trish

Thank you for your email. I am copying in Josh (Head of Comms) and Clare (Head of Services) who lead work on producing and sharing our resources.

We will be taking a different approach to this going forwards, linked with work we are undertaking to develop a new website (which will be launched next Spring ). We do naturally already have considerable involvement from people with lived experience across all aspects of the organisation in helping us with this content, especially with our membership.

While we don’t have capacity to set up and manage social media consultation on all of the new content from the wider community beyond those supporting members, we would be of course be very happy to include you or a colleague from S4ME in the group of people involved who bring lived experience support to our work. If you are interested, maybe you could let Josh know and he will be in touch in due course to follow up.

We are also engaged with MEA on a number of topics, and one of those is looking at how we can increase coordination while also offering the community, and particularly our members, the choice about where they go for support and information. Through the World ME Alliance, we are also exploring how to better align/endorse the varying publications and resources on a global basis to aid confidence and minimise unnecessary duplication.

Regarding the concern referenced at the end of your email, we have acknowledged that an error of judgement was made, and normal processes were not followed. There was, as you know, involvement from people with lived experience (albeit not through us) and this possibly influenced the decision. My colleagues are aware of this, and it will not happen again. As you would expect, I am not involved in all decision-making but the responsibility rests with me and I can assure we have learnt from this unfortunate situation.

Many of my team have long-term conditions themselves and are fully versed in the nuances and challenges that exist in the ME field and many are active on S4ME and other forums. Josh and Clare also keep a regular watching brief so that we are appraised of key developments and viewpoints. Our induction also includes recommended watching/reviewing including your references. This one regrettably still slipped through.

Thanks again for your response – it is appreciated.

Sonya Chowdhury, Chief Executive, Action for M.E.
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Trish said:
I had the following reply from Sonya on 14th September. Sorry for not posting it earlier. I will reply briefly thanking her and explaining I don't have capacity to contribute further to AfME's materials but others on the forum may be interested.
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Thanks @Trish.
Excellent work.

Sorry it cost you so much. I hope you are now able to do something distracting like watching slow moving nature videos or something to refresh yourself and take mind off all this stuff here.




I don’t feel great about this second reply from Sonia. But I am too exhausted to work out specifically what concerns me.

How’s everyone else feel about where we are?
 
Ash said:
How’s everyone else feel about where we are?
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I'm still impressed that Sonya saw and acted on the problem straight away. It would have been so easy for her to retreat into defensiveness.

I do wish she saw the advantage of allowing S4ME to participate as a community, though. I wouldn't put myself up for a place on any consultation group, partly because I don't have the energy, but also because I'm afraid I might miss things. Some of our other members might have similar concerns.

It's so different when there are numerous pairs of sharp eyes on it, and there are people with a variety of skills, aptitudes and experience, and the process can include those who're severely ill.
 
As so often I think @Kitty has put it well. I agree. Pleased with how Sonya responded. We need to find a way for a group to have input rather than it falling on an individual (a bit like some of the suggestions for patient participation in research). I understand this is hard.
 
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