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

ETA Note link to raise concerns direct with Bristol Clinic

 

Wow, I’m shocked but also very pleased and reassured. I won’t tag Trish as she’s crashed but massive virtual Pat on the back for doing the letter, which was a mammoth task, and sending it off. Really reassured to hear this from Sonya.

 

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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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.

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.

 

Many thanks to all involved. Especially Trish. It all feels very positive.

 

All credit to Sonya for a clearly argued and rapid response.
I can understand why this would have been difficult to pre-empt on her part.

 

This is fantastic news. Thanks so much to @Trish for all her work on it, and to Sonya for listening so carefully.

 

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

 

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

 

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.

 

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.

 

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

 

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.

 

An ME charity should give due respect to a collective response from S4ME, as should researchers. We've earned that.

 

Just catching up. That's amazing and such a contrast with other organisations' behaviour. Congratulations to Trish and all involved in writing such a powerful letter, and thanks to Sonya for listening and acting.