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

Similar posting on Facebook .
Interesting that the resource was only being commented on by AFME and is owned by the Bristol clinic . That certainly didn't come across previously .
Facebook screenshot attached

Thank you @ Trish
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ETA Note link to raise concerns direct with Bristol Clinic
 
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Wow! A Result! So very well done Trish!! And everyone who contributed.

What we now need to hear is that AFME full stop finish 'their reliance' on Peter Gladwell, the North Bristol Clinic, and most definitely BACME. Those orgs/individuals must in future be nowhere near ME guidelines, projects etc. The idea of slowly slowly educating BACME is just fantasy - we don't have any more time for that.

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Peter Trewhitt said:
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.
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Trish you're a complete marvel! Thank you so so much, i know this took all you had for the time it was being drafted. And to all who gave input & edits too. You have helped many many people by doing this.
Blueskytoo said:
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.
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Yes, I'm pretty impressed with AfME & Sonia Chowdary over this, I know where my membership money will be going next year! After the PACE debacle i never thought I'd say that but it just goes to show.
 
Trish said:
Thanks for posting the reply, @Andy. Yes I received the reply by email today.

And many thanks to AfME and Sonya Chowdhury for taking concerns from us and others seriously and acting quickly.
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Thank you Trish for your work on this

I am so relieved that finally something doesn’t feel like a fob off inferring really it’s the patients fault etc that it felt we’d been getting habitually / knee jerk been believed to be the problem again. It was starting to feel desperate that our allies had been captured somewhat and we were back to being ‘done to’ , unheard, and told we were the problem etc

the ray of hope and relief of just getting this back replying as you’d hope a normal person would (when we were starting to horribly get used to not being able to assume that) , so it’s not ‘all’ after all, is enormous.

edit to add: respect , that’s the word. That feeling of something seeing what we might say with respect again
 
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Fainbrog said:
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?
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It sort of sounds like they are touching on asking themselves that same question in how robust the reply sounds about fixing things. Which if so I’m very pleased to hear about
 
bobbler said:
It sort of sounds like they are touching on asking themselves that same question in how robust the reply sounds about fixing things. Which if so I’m very pleased to hear about
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I’d like to say I share your optimism - time will tell I guess.

To be fair to AfME though, it was a pretty unequivocal response, so, they may be taking things a bit more seriously as a result of this.
 
Fainbrog said:
I’d like to say I share your optimism - time will tell I guess.

To be fair to AfME though, it was a pretty unequivocal response, so, they may be taking things a bit more seriously as a result of this.
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NO I agree you are right to be cautious, good to hear a line about new ways forward involving seeking input though - but yes, too true there is a chance I've read what I hoped for into it :) and forgotten that there are many versions in between
 
MrMagoo said:
Reading between the lines, “the Board” considers relationships and I suspect that there’s a relationship at that level with Gladwell that is above Sonya’s pay grade.I think he’s been involved there since before her tenure.
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yes on the it is interesting to understand more about these things and the different 'forces' in the charities that might pull one way or another. As I guess that is 'who/what' these things are, and I'd be intrigued to have a run-down for these players so I can understand more what the landscape is in that way.
 
Thank you Trish, and Sonya for listening and acting promptly. :thumbsup:

Lou B Lou said:
What we now need to hear is that AFME full stop finish 'their reliance' on Peter Gladwell, the North Bristol Clinic, and most definitely BACME. Those orgs/individuals must in future be nowhere near ME guidelines, projects etc. The idea of slowly slowly educating BACME is just fantasy - we don't have any more time for that.
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Yep, BACME are a complete waste of our time and lives. Sooner they are left in the dust of history, the better.
 
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