United Kingdom: ME Association governance issues

Dx Revision Watch said:
A PDF I have prepared with materials from ME Essential magazines from 2013 and 2014 and some notes:

https://dxrevisionwatch.wordpress.c...essential-egm-2013-and-ogm-2014-materials.pdf


The image below (Summer or September 2014) is the key notice:


summer-2014-notice-of-repeating-of-rule-changing-excercise.png
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If 'there had been no changes to the substance of those "regulated clauses"' why had they put out a Resolution for specific changes to articles 24 and 28 in 2013?

A great deal of the wording of the entire Articles had been redrafted from version 2007 to version 2013 because of the adoption of the major part of the "new model form". But the Resolutions included "specific changes" to clauses 24 and 28.

If those changes were not "changes to the substance" why would have they have needed to have been specified and voted on? But then nothing Mr Riley writes makes much sense.
 
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Cinders66 said:
If they’re not going to improve female/severe representation at a decision level, they need to hold special outreach to show they “get it”, care and will listen to & reflect the female & severe voice, given they assume a seat at the tables and decide/represent for all
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Which they are now going to be doing. New for this org, MEA, & very overdue, too late for me, from a charity that's seemed incapable of understanding needs and acting with due urgency
 

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Cinders66 said:
Which they are now going to be doing. New for this org, MEA, & very overdue, too late for me, from a charity that's seemed incapable of understanding needs and acting with due urgency
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It's a shame they haven't publicised it more widely, as there could be a sizeable number of severely affected people who're not MEA members because they don't feel represented.
 
The MEA has commissioned a membership survey as part of a governance review, members are being sent the following email with a link to undertake the survey online:
The ME Association has contracted Selinger Consultants to undertake a governance review of the charity, and an important part of that process is to hear from the organisation’s valued members.

This short survey is an opportunity for members to input into the review process - and to have your say on what you gain from your membership, what you’d like to see improved, and how The ME Association can strengthen the way the charity is run.

… … …


This survey is intended for The ME Association members only.

All responses are completely confidential. We don’t ask for your name, and any demographic information we ask for is optional.

A hard copy of this survey has been sent with the ME Essential Magazine, for those who would prefer to do it on paper. ... … …

This survey must be completed by 22nd June 2025.

Thank you for taking the time to voice your views on how the ME Association can be improved.
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I have not looked at the survey yet.
 
Trish said:
If any MEA governors are reading this, I would like to respectfully suggest they also invite those of us who have despaired of the MEA after several major mis-steps and discontinued our membership be invited to provide feedback too.
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I was wondering if we might want to comment collectively as S4ME, but had originally intended to do the survey as a member first and find out a bit more about what they are looking at before raising the suggestion.

(Added - my copy of ME Essential Magazine has arrived as well, so I will have a look at what it has relevant to this review.)
 
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Trish said:
If any MEA governors are reading this, I would like to respectfully suggest they also invite those of us who have despaired of the MEA after several major mis-steps and discontinued our membership be invited to provide feedback too.
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It speaks volumes that they've not taken the opportunity to ask why many of us are no longer members, or never were.
The questionnaire just stops if you say you aren't a member - it could have had a different set of questions, but, no, we're the MEA, we don't want to hear from those who don't drink our kool aid
 
I've done the survey.

To be fair to the MEA it has outsourced the governance review to an entirely independent company so there seems a desire to do it right (and probably an awareness they need to be seen to be doing it right). The survey seemed whilst not perfect reasonably comprehensive and well constructed to me with clear sections and plenty of free form text boxes at each stage to allow for member verbatim.

In the same magazine issue it has advertised for severe PwME to apply to go on a member panel which was something suggested at the AGM which it appears to be taking on board.

My impression is that the strong feedback definitely landed and the organisation is making efforts to change and improve itself.
 
Kiristar said:
To be fair to the MEA it has outsourced the governance review to an entirely independent company
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I’ve done a few external reviews myself, and it’s really a mixed bag. You can easily find someone to report whatever you want to report, or that will at least let you influence what they look at or how the results are presented. But if the owner of the project wants it done right, that’s absolutely achievable.
 
Peter Trewhitt said:
The MEA has commissioned a membership survey as part of a governance review, members are being sent the following email with a link to undertake the survey online:
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Trish said:
If any MEA governors are reading this, I would like to respectfully suggest they also invite those of us who have despaired of the MEA after several major mis-steps and discontinued our membership be invited to provide feedback too.
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Has anyone asked them whether they will make the survey open to the public, thus including non-members?

If they won't, I think it's important that all UK PwME get a chance to give feedback, because what the MEA do affects all of us - especially in the harmful paradigm in which we live.

I'm not suggesting this as a job to load onto our committee but I'm wondering if there's any way to set up an open questionnaire, directed at the wider PwME community, that asks essentially the same questions of MEA non-members. It should probably paraphrase the MEA's questions to avoid copyright issues, and should automatically spit out a summary. A Google survey would do this but there might be GDPR concerns. We could clunkingly set up polls here on the forum, and threads to answer open-ended questions but people would have to register on the forum, which could be a stumbling block for those not already on it.

I wonder if this could even be a job for #MEAction, but I don't know the politics.

This would be helpful to the MEA, and - more importantly - to all UK PwME.
 
Peter Trewhitt said:
I was wondering if we might want to comment collectively as S4ME, but had originally intended to do the survey as a member first and find out a bit more about what they are looking at before raising the suggestion.

(Added - my copy of ME Essential Magazine has arrived as well, so I will have a look at what it has relevant to this review.)
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Are you able to tell us what questions are in the survey?
 
Sasha said:
Are you able to tell us what questions are in the survey?
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In summary 6 Sections with question topics on
1. About your membership, how you interact
2. Understanding how their governance works, transparency and level of confidence that are acting in beneficiary best interests.
3.Member Engagement (feeling heard, wanting to be more involved and how)
4. Purpose and future direction, how well is it fulfilling it's purpose in various areas, what are top future priorities, if you could change 1 thing
5. Diversity questions
6. Final comments
 
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