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

Just coming belatedly to this thread. Stellar letter, @Trish!

I've pulled out quotes relating to how S4ME might contribute to better AfME materials going forward. I'm going to summarise it in my next post and make a suggestion for a way forward.

 

I thought it might usefully feed in but I'll hang fire and will PM you (a bit later).

 

Sonya didn't specify how their review process works, but an obvious way would be for a staff member to write the first draft of each document and email it to each PwME in their consultation group for individual, written feedback.

As you say, any individual can approach AfME and ask to be part of the process. But as @Kitty says, it would be daunting for just a single person from S4ME to feel responsible for providing informed feedback that's based on science and knowing the lie of the land - a small group here could do a better and more confident job of providing solid advice. They could pre-review AfME materials in confidence on a private subforum, and send their collective comments as a single document. This would fit with AfME's standard process, if it is what I think it is.

None of this would imply any official S4ME endorsement, and so wouldn't need to involve the committee. The group would simply be using their private S4ME subforum as a chatroom. They would no more represent S4ME than a bunch of people who rent a room in a pub to discuss gardening would represent the pub.

This would allow AfME better feedback than relying on patients who only have their lived experience to draw on.

I think your letter to Sonya was terrific and that it has opened up a very win-win opportunity. If anyone likes the idea of taking this forward, and there's no objection from the committee, perhaps a first step would be to see if there are people here interested in forming a small group and if there are, approaching Sonya to ask about the consultation process and whether what I'm suggesting would be suitable.

Anyway, just an idea. Happy for it to be parked if I'm wrong about the committee not needing to think about it (I don't want to even make them discuss whether they need to think about it, because they are clearly overloaded!).

 

You’re not wrong @Sasha that AfME could benefit some help, given they’d not managed to review and update their materials or associations in years clearly they do.

But as @Trish & @Jonathan Edwards have mentioned in various places AfME have made it quite plain that they don’t want it to come from S4ME as an organisation itself, nor from a group contribution coming from people on S4ME.

Thats the boundary that AFME are putting around outside involvement with resources that go out under their own name.

 

Can you point me to where they have said that they don't want a group contribution coming from people on S4ME? I'd be a bit surprised if they had ruled out contributions from a group simply using S4ME as a chatroom.

 

The following is all from memory because I can’t re read the letter so apologies if I am misremembering or misrepresenting.

It was in the reply to @Trish from Sonya. In the context of Trish saying that people from S4ME would happy look at materials and give feedback and Sonia replying that if anyone wanted to contribute they could do so but as individuals via existing channels within AfME. I take this to mean help was offered and refused.

Especially as JE met with Sonia and said that this was a good meeting, that the door might be open for collaboration. But later said (don’t know which post I am afraid) something about how he’d offered closer involvement, but it was clear that AfME didn’t see themselves as being aligned in this way.

Again from memory not saying this was what was exactly said by any of the parties involved, just that this was the broader impression I had after reading what everybody said, which was also a little while ago so not fresh in my mind.

I also felt that in the thread we were expressing some disappointment about precisely this rejection of help.

Not because anyone is looking for extra work but because we feel like AfME haven’t been reviewing their own content sufficiently and that this is negatively affecting all of us as people with ME.

Additionally as @Kitty says, because as pwME it’s particularly difficult for us to think things through or notice things by ourselves so this effectively bars access to meaningful participation for many of us.

But since S4ME is now approaching the issue of materials by beginning a project of fact sheets, hopefully AfME will only best these rather than lagging behind.

Or at least pwME will have a choice on what to read or share.

 

Maybe they don't realise how hard it would be to get agreement on a three-word motto here, let alone the canonical version of a consultation response!

A response they'd be free to largely ignore, pick the odd phrase from, or use as part of the framework if it chimes with what everyone else says. It's their publication, they get to decide.

 

I’m sure they do realise!
Yes exactly it is.

 

Thanks, @Ash. I quoted the relevant bits of Sonya's letters to Trish upthread, here, and I don't see anything that would rule out what I'm suggesting. Sonya was inviting individuals to take part but I think this idea of a group acting like an individual and not officially representing the forum might be acceptable to AfME.

 

Thanks, Hutan, but what I'm suggesting isn't any sort of association between S4ME and AfME. I'm suggesting that if a bunch of forum members wanted to work together to have input into improving AfME's materials, they could approach AfME and ask if they could be treated as an individual who would send back comments on a draft in a single document. They could just as easily be meeting in a pub to discuss this. S4ME just happens to be providing the chat facility that would allow them to do this.

 

@Ash wrote:
" .... we feel like AfME haven’t been reviewing their own content sufficiently and that this is negatively affecting all of us as people with ME".

And has done for decades. Personally I think AFME too easily slip back into their old comfy patterns.
And that while Sonia's reply to Trish is good, it's not enough to guarantee that AFME's decisions and material will all be brought up to date, with no more pandering to any part of BPS ideology or culture.
.

 

Yes.
No, it isn’t.

 

I was reassured by Sonia’s letter. I got the impression that whatever slack gatekeeping had been happening in the past was not going to be allowed going forward.
I don’t think it’s too much to ask that our charities consider our needs before issuing guidance. I know in practice that isn’t happening, but it’s been pointed out to them and only AfME seemed contrite, and committed to improvement.

 

Yes I agree this was a very promising start.

But it’s also true that we don’t know what will happen until it happens. With the best of intentions other priorities may overtake the in house literature review.

Additionally long before this interaction with S4ME a great many people with ME and their carers have requested changes from AfME in relation to BPS associations and literature that is influenced by these associations. Without success.