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

@PhysiosforME illustrate that Physios can get (ie understand) ME and what their role can be.

[sorry cross posted with @Trish ]

 

That’s my point - it’s ’this Area of physio’

the one that’s decided to focus on behavioural and fatigue

is there a role for that - and I think that’s an important question Because I assumed not when guidelines changed

and their behaviour since has underlined it

might be a different physio area like physios firME taking it on too

Does it need to be renamed and distinguished from this old paradigm/how can we clarify that ?

what do we call the difference between the two?

 

But I think MrMagoo is essentially right.

Physios for ME are people who happen to be Physios who understand the problems with physio approaches to ME/CFS. And those problems relate to a general problem with a profession that it is based on a practice of doing what you think ought to work, without any reliable evidence base. The problem is the way the professionals is taught and that teaching is deeply ingrained.

I don't think people with ME/CFS need physiotherapists. A team of doctor plus specialist nurse with OT training makes most sense to me.

 

As far as I can work out the 'Government Delivery Plan' says nothing about provision of services. My limited involvement in service development suggests to me that it is delegated to people in local Trusts who probably have no real understanding of any of this. Patients may get involved but probably themselves have little understanding of options or what is really needed.

So the situation is pretty dire. But that still doesn't justify pretending to produce a care plan when nobody is providing care - as you have pointed out.

 

Thanks @Trish for writing this and others for very considered comment, it takes so much energy for people as broken as us to deal with stuff like this.

I've not got the energy to digest the whole document, but my immediate, gut response is it is obviously well intentioned, but flawed and the connection to Bristol NHS (and Gladwell?) is presumably due to the location of where AfME are based. Which of course doesn't excuse it and in a way makes it worse that they have not been able to influence their closest NHS trust - I dunno...

However, what really grinds my gears about this (sorry, am in proper grump mode this morning and could be in a minority of one in having this view), more than the content, is the actual document itself. And, I might be being unfair, placing too high an expectation, but, it's a mess. Huge swathes of text, not neatly broken into paragraphs, bullet points half-way down pages or straddling pages where it would have just been neater to remove a blank line or ten, insert a page/section break.

It's like the attitude on presentation at sign-off was that'll do. And that just annoys me. Are we only worthy of, that'll do? I know it's a template that will be b*stardised every time it's filled in, but, surely, start with something that is professional, something to be proud of, not this half-baked mishmash of meh.

I do feel for AfME (sometimes), they are damned if they do and damned if they don't, it's not personal, but, surely the do should pass even the most basic of presentational QA at sign-off.

<steps away from the keyboard for a while>

 

Great it's been acknowledged and is being looked at -well done Trish !

 

The following response from Sonya has been posted on Action for ME's Twitter account and, I believe, has already been sent directly to Trish.


"Thank you for sharing your detailed concerns about the Care and Support Plan template on our website. I am responding to this in line with our complaints policy, in the hope that we can achieve a resolution.

I understand the time and energy it will have taken to gather and collate this feedback, and I hear your significant concern and frustration, driven by your commitment to ensuring that people with ME receive appropriate care, support and resources.

Our intention was to support the production of a resource, led by people with ME, that can help them access the care and support that meets their needs.

Given feedback from you and others, it is clear that we have not achieved this.

You have asked that Action for M.E. withdraw the Care and Support Plan template immediately, with apologies to people with ME and an explanation.

I am sorry for any potential harm caused and apologise on behalf of the charity. We have removed the resource from our website and social media. We have also asked that references to Action for M.E. be removed from the resource, which is owned by the NHS Bristol ME/CFS clinic (our role was to review and comment). They may choose to go ahead with their planned publication.

You have asked us to share your feedback with Peter Gladwell, which we have done, along with feedback from other people with ME.

We regularly review our resources and are in the process of reviewing all of our advocacy and other publications to ensure that they:

• comply with and link to the 2021 NICE guideline for ME
  
  
• accurately represent the aetiology of ME, along with other key concepts and definitions, with reference to published, peer-reviewed research and user experience.
  

You also raised concerns about the sections on activities and limitations being too long and inadequate. Feedback we have received from other individuals also highlights that they found the format of the resource challenging.

As part of our resources review, we will look at how we meaningfully consult on, test and gather feedback on new/revised resources, to ensure this process is fit for purpose and engages with a cross-section of the ME community. Should you or any of the forum members wish to input to this, we would welcome involvement.

As part of your complaint, you asked Action for M.E. Trustees and Officers to have a frank discussion about our reliance on Peter Gladwell, the Bristol Clinic and BACME as sources of materials and information.

The Board already considers partnerships and any discussion that the Board has will be fed into future decisions that my colleagues and I make about future partnerships.

In your email you say that Action for M.E. can and should do better. I agree, and I hope that you feel assured that the actions we have set out above demonstrate our commitment to doing better. I am grateful to you for bringing this to me.

You have said that you will share this response on the S4ME forum. We will also share it on our website for transparency."

Direct link to reply, https://www.actionforme.org.uk/uplo...._Care___Support_Plan_resource_03.09.2024.pdf

AfME Twitter post

 

Great result, withdrawn, apologies etc.

The response from Sonya begs the question, how on earth did this get signed off by AfME? Did no-one disturb a couple of brain cells about it? Utterly baffled.

ETA

They say they are currently reviewing all their materials to make sure they are compliant with the 2021 GL. Now my brain may be mush, but, that is the GL that was published nearly 3 years ago and they say they are reviewing stuff against it, now?!

They are a national charity representing people with ME and only c3 years down the line are they reviewing their materials to make sure they are GL compliant. That should have been priority upon publication, surely? Is it any surprise that we are so badly treated? AIBU here?

 

Thank you Trish and those who contributed!

 

A great result, thank you to @Trish and everyone involved for the work put into this. Though in an ideal world they would have not needed this prompting, credit to AfME for acting decisively on this.

Shame that the MEA are not acting as proactively in relation to their PROM project that also allows BACME members to promote an ongoing misunderstanding of our condition.

 

What a difference between the responses from AfME over this and the MEA one over the PROM thing. Very impressed with such a thorough mea culpa - not only a proper apology but concrete steps provided on how they’re going to do better, such a contrast with the patronising gaslighting from the MEA.

Thank you, Trish, for all your hard work and effort on this, I hope it didn’t cost you too much x

 

Yes @Peter Trewhitt. Summed this up nicely.

AfME are showing MEA how it done with this turn around and acceptance that they have made a mistake that is detrimental to pwME and those who would support us.

Thank you to Trish & everyone here.

 

How do you feel @Trish?