United Kingdom: ME Association governance issues

Jonathan Edwards said:
But the wording is crucial in a real world.



I would say that the treatment is just rational care for someone who is in the situation someone with ME/CFS is in. If someone who has just had surgery or chemotherapy is asleep you don't wake them up unnecessarily. The same principle applies to someone who cannot bear noise with ME/CFS. Nothing 'special'. As soon as it is out of the scope of ordinary care you are down the rehab shoot.
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Yeah but that’s got to be spelled out and written down, basic care isn’t working right now so it needs to be specified. Deaf people aren’t given translators or even a piece of paper with writing explaining things, palliative patients are shoved in noisy corridors for days…
 
Trish said:
We need specialist services in the sense of ME/CFS being part of a hospital based specialist department, probably rheumatology, since psychiatry, neurology and rehabilitation medicine have all made a pigs ear of it by deciding ME/CFS is a psychobehavioural problem and requiring rehab clinics run by assorted therapists.

Being in rheumatology, or some other appropriate department, means they have to provide consultants, specialist nurses and access to home care nursing and doctor visits as is provided for other long term disabling conditions. The problem with saying dealing with contractures needs to be integrated into nursing care from day 1 is that currently there is no nursing care for most pwME. Whether it's done by specialist ME/CFS nurses, or district nurses with ME/CFS knowledge is not really the point. At the moment there are no nurses for most pwME, apart from a few like Anna Gregorski at BACME who has swallowed whole their rehab model. Home care shouldn't be solely left to carers employed by care agencies - the ones I employed had one day's training on how to lift patients and how to dispense meds, before being let loose on solo visits to carees, and a very high staff turnover.

This thread is supposed to be about the MEA's problems with governance. The problems run deeper than governance if trustees role is simply to ensure financial probity and smooth running.

If the MEA is to change direction on its current all-in support for the BACME rehab model, they need leadership from the top. I have no idea whether their current trustees even understand the problem. And by having no CEO, they are leaving their current staff to make decisions on everything from content of advice materials to advocacy at government and NHS levels. They are employing staff to advise Integrated Care Boards on provision of local services, but I haven't seen anything published about what advice they are providing.
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Re,
'They are employing staff to advise Integrated Care Boards on provision of local services, but I haven't seen anything published about what advice they are providing.'
The MEA were invited to help shape our Coproduction in 2022 when the ICB committed ti enshrine ME within their 5 year Forward Plan. The medical director CS was enormously helpful and provided timely, constructive advice.

Alongside CS was the Isle of Man service Development, much lauded at the time.
It did not cut the muster from our evaluation however.

In 2023, CS was unavailable, so the paid employee was approached - the new (problematic) Head of Health and Social Care. It's been down hill ever since....

The intervention in that form, at that time was a particular problem for us.

It resulted in us being cast aside - thrown out of engagement. Coproduction being ceased and MEA actively supporting subversion of our due, process built over 2 decades of productive working with our commissioning team.

I will never forgive MEA RF for that behaviour.
Is that feedback enough Trish?
I have FOI and other evidence.....
 
Kitty said:
Having decided to align themselves, it might be difficult to retreat.

They'd have to explain why they thought the rehab model was so good they decided to fund the creation of outcome measures the NHS ought to be paying for, and now they think it's wrong.
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If they wanted to do this then they could find a way to explain this by switching back on the proper unedited two-way communications there was before (eg fb allowing posts to be created by non staff used to happen a lot as was letting bad feedback run and taking note of it when people dusageeed with a decision).

And the.n noting the decision to have a change a culture since certain individuals have left who might have had certain initiatives and attitudes towards pwme of different types.

What puzzled me the most is the idea some of those inside MEA like Charles even had eventually somehow been convinced that patients wanted them to work with bacme when the message did the preceding years had clearly been the opposite loudly discussed and acknowledged. All I can assume is that it’s the manipulative communications that certain backe members seem to have engaged in with individuals over years that gaslighted people. Or maybe there is something else

It’s all a bit not knowing whether to ask the person whether someone has got something over them type thing
 
I have just been reading through some of the news items on the MEA website from their health and social care team. I have looked at it before. They have been busy with a pilot project and several visits to different integrated care board areas to give talks and hold meetings. All very busy, but I can't find a policy statement about what advice they are giving to funders about the services pwME need. It all seems very vague. They have, as we know held several sessions hosted by ELAROS for NHS clinicians. None of that is transparent. We are not allowed to see any of it.

I think it would be reasonable to ask the MEA to make a formal public statement about their policy on what advice they are giving to clinicians and funders, and to make all such advice sessions publicly available. They are working on our behalf paid for by donations from pwME. We deserve to know what on earth they are doing.
 
Trish said:
I have just been reading through some of the news items on the MEA website from their health and social care team. I have looked at it before. They have been busy with a pilot project and several visits to different integrated care board areas to give talks and hold meetings. All very busy, but I can't find a policy statement about what advice they are giving to funders about the services pwME need. It all seems very vague. They have, as we know held several sessions hosted by ELAROS for NHS clinicians. None of that is transparent. We are not allowed to see any of it.

I think it would be reasonable to ask the MEA to make a formal public statement about their policy on what advice they are giving to clinicians and funders, and to make all such advice sessions publicly available. They are working on our behalf paid for by donations from pwME. We deserve to know what on earth they are doing.
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AGM next month as well
 
Trish said:
I have just been reading through some of the news items on the MEA website from their health and social care team. I have looked at it before. They have been busy with a pilot project and several visits to different integrated care board areas to give talks and hold meetings. All very busy, but I can't find a policy statement about what advice they are giving to funders about the services pwME need. It all seems very vague. They have, as we know held several sessions hosted by ELAROS for NHS clinicians. None of that is transparent. We are not allowed to see any of it.

I think it would be reasonable to ask the MEA to make a formal public statement about their policy on what advice they are giving to clinicians and funders, and to make all such advice sessions publicly available. They are working on our behalf paid for by donations from pwME. We deserve to know what on earth they are doing.
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Absolutely....
 
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