Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

[Skycloud]

I also support your letter @Trish, thank you for sending it

 

[MeSci]

Well done @Trish! Great letter!

Thank you so much for the time and energy you out into it. I hope it hasn't wiped you out completely.

@Action for M.E. , if you read this thread - for the record I agree with every word she said.

I support your letter too, @Trish.

 

[ukxmrv]

Thank you Trish,

It's a great letter and I really do appreciate your fine effort.

 

[InfiniteRubix]

Hello all,

1st post ever

Do we know who funds Action for ME, controls their governance mechanisms, has influence over trustee selection, etc.?

 

[Snowdrop]

@phil_in_bristol might know the answer to at least part of your questions.

 

[alktipping]

great letter trish but afme have proven time and again that they will not listen to actual patients they have their own agenda and it certainly is not to help us . my health was made considerably worse to the point I am 95 %percent house bound thanks to the dwp and their obsession with denying benefits to the long term sick .

 

[Invisible Woman]

Welcome @InfiniteRubix

@Action for M.E. has a rep who is a member here, but they went very quiet some time ago.

 

[dangermouse]

Thanks @Trish

 

[MSEsperanza]

I support your letter too, @Trish.

Me too, @Trish

 

[InfiniteRubix]

Welcome @InfiniteRubix

Thank you very much

 

[JaneL]

I fully support this letter too. Well done Trish, fantastic stuff

The way forward

I therefore ask that AfME take responsibility for this major error of judgement in producing and disseminating this unevidenced document, and withdraw the ‘Toolkit for Professionals’ immediately, and inform the DWP, and anyone else it has been given to, that this has been done and why.

This needs to happen. We need to push for this.

 

[phil_scottish_borders]

@phil_in_bristol might know the answer to at least part of your questions.

I don't have any firm answers I'm afraid! I wasn't aware this was coming out ...

AfME have received the letter, & I know the staff member who will be dealing with it.

I can say that AfME's rep on here (presumably the staff member / volunteer who set up the s4ME a/c name) is too busy to monitor the forum at present. So unlikely to get replies on here directly from AfME. Hopefully when Trish gets replies she can update us all - thanks again Trish.

 

[Snowdrop]

Do we know who funds Action for ME, controls their governance mechanisms, has influence over trustee selection, etc.?

This was the Q.

 

[Trish]

I wasn't aware this was coming out ...

Neither was I until I wrote it on Saturday.

Edit: And spent most of Sunday lying in a darkened room...

Second edit: Or did you mean you weren't aware the Toolkit was coming out?

 

[InfiniteRubix]

Sorry for not being explicit. It's an amazing letter @Trish Thank you. A4ME have already played a direct part in damaging my health.

I had a few things I was going to add to my original message, that may or may not be best placed in your letter. But it's related at least, so want to flag here. Or is there a general A4ME thread of some kind regarding their positioning, structure and interests that I should post to, or here?

But I'm exhausted today and I know that I have a few tough days. I'll post properly in a few days when energy returns.

 

[Trish]

Thanks, @InfiniteRubix.

If you want to post general stuff about Action for ME not specific to the 'Toolkit', I think this thread would be a good place for it:
Action for ME: Our new years resolutions

 

[InfiniteRubix]

Thank you!

Good luck with the letter. The people who broke me in two when I was newly ill last year were armed with their publications....

 

[phil_scottish_borders]

Neither was I until I wrote it on Saturday.

Edit: And spent most of Sunday lying in a darkened room...

Second edit: Or did you mean you weren't aware the Toolkit was coming out?

Yes - the Toolkit....

 

[Amw66]

Yes - the Toolkit....

Given you are now a trustee(?), have been more severely affected previously, straddle the patient/ organisational divide , it seems strange that you were not aware of this .

Had you at least the opportunity to comment on the info pre issue?

If not then you may have a significantly bigger issue than we do.

 

[MEMarge]

I am not sure how long this toolkit has been around. It is undated.
Under acknowledgments it does say:

"This resource is based on the considerable knowledge and experience of Paul Davey, Project Coordinator, and Amanda Mason, Employment Adviser, who delivered our specialist 18-month pilot project, Support, Empower and Employ people with M.E. (SEE M.E.) in 2015-16."

and includes:
"Action for M.E. is also enormously grateful to the following people for their input, expertise and experience:
......
• all those in our Patient and Carer Reference Group who reviewed this toolkit."