United Kingdom: ME Association governance issues

[Jonathan Edwards]

Do you think we will see such a breakthrough in the next year? Or do we have to wait to see how the dara trials work out?

No idea.

 

[MrMagoo]

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.

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…

 

[MrMagoo]

I made this meme and wasn’t sure where to put it

It’s a hand sinking in the sea and the ME clinic reaches out, high 5s and says “just pace” and the hand sinks.

 

[Suffolkres]

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.

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.....

 

[bobbler]

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.

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

 

[Trish]

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.

 

[MrMagoo]

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.

AGM next month as well

 

[Suffolkres]

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.

Absolutely....

 

[bobbler]

I think that thees an issue with the different experiences people have with different disciplines. And this goes to the heart of the problem.

I’ve had terrible experiences with physios and psychiatrists, so I would probably now write them off. However if I’d been seen by, say, a Physios For ME physio I’d have a much better experience.

What we need first and foremost is “special care for ME” which is in my opinion - treating us differently than your elderly/broke my leg/MS/MND/cancer patient, necessary because of PEM, fatiguability, deterioration of ME/CFS.

Because so few professionals have the unusual needs of the ME patient at the forefront of their mind, they all default to what they know, “business as usual” aka - rehab, build up, pace up, oh you seem difficult maybe you’re actually depressed.

Conversely, if we had professionals with “doing stuff makes it worse and none of this is their fault” tattooed on the inside of their eyelids, they would be quite capable of looking after us well.

Where we become tied in knots is that the scope for healthcare professionals to default to “business as usual” is so wide, we try to bake in the “treat us well” by expelling the worst professions.

Actually we need to demand safe care which doesn’t harm us, from everyone.

This.

As a thread in itself. I'd really like to discuss this one and put the finger on what it is that delineates the very few genuinely good ones. Professionalism, proper professionalism is up there. ALong with utter straightforwardness as a person and a move away from this playground group queen bee type culture stuff. Those few who are good seem to be quite different in being grown ups who stand back and have actively separated themselves from getting dragged into storytelling. It feels like the problem is part happenning in informal calls and coffee breaks except it isn't, it is I'm guessing to do with the way systems and team type stuff works.


I've now had a lot of different experiences of different people in different roles and across different situations over many years. Some not knowing I had ME/CFS (even tho the something else not right being obvious it not being relevant to the matter at hand), some having been informed because it was important for whatever reason and lots of in-between. A lot I suspect having at some point had some note dropped to them.

Other times as your post above re: the faulty functional-fixedness of the rehab myths it might be an appointment about something completely unrelated and waiting at which point the shoe will drop and I'll either be discovered as 'one of them' or suggested something is due to whatever cliche and have an awkward how to keep myself safe situation.

And I've watched a lot go from being OK and interested and being actively changed overnight by what was clearly someone else influencing them, even if I'd known them a long time they'd be like a different person suddenly.

Others suddenly obviously going into the 'trying to impress somebody' mode even if it themselves because they read some storytelling thing from a different subject that because its untrue is 'easy to understand' and suddenly think 'being interested in it' substitutes 'being serious about it'. There is a lot of people in our area that are being allowed to 'play at being innovative/helpful' etc. It's that playing at it thing that comes through from the worst and most enthusiastic offenders, and they don't even know they are playing at it and haven't just found a new niche they are randomly more genius at and 'just get' in a way all the other science has been hard.

And the not great ones are genuinely always keen to convert the good ones you can trust as soon as they've done something wrong to you in order to cover their own back normally, and yes it is quite obvious they've 'done something' behind the scenes to those who've been in any system and watch how such people act. It's quite terrifying to be frank. And their 'conversion speech' I suspect always starts with some lie about 'noone is like that anymore' whilst the whole thing is clearly selling us being mad and paranoid and joining them and their what would be to any other person in any other group called 'trashing' of an individual.

I think the 'multidisciplinary' and people being dragged in who factually have nothing to add but need to justify their seat and place in the team - rather than that concept working as it should: having the person there if that aspect is needed so the expert speaks on the thing (eg if in a different context a blood thing came up on a bone case) but shutting up rather than having to invent a psych history and all starting to ape that crap and chat on people's intimate life and intrude in their privacy just for colleagues to feel part of the club, and maintain their bigger place in the hierarchy.

Ironically this supposed biopsychosocial/holistic is about removing the patient from control or even input into anything being discussed and the worst kind of bigotry where myths are created about large numbers of individuals just for some common ground to discuss based on made up stories in the absence of anyone getting the actual info from either science or active listening and proper history. They never 'get to know' the patient but are predatory where someone feels things are being extracted, assumed or in the absence of that plain made up to fill gaps they want to fill.

 

[bobbler]

We are saying the same thing - we need safe care.

With a broken leg there is a op, a cast off then build up gently. With cancer there’s treatments, then build up, with MS there’s a relapse, then build up.

With us we just…are. So we now need to build up…A crash isn’t seen as a massive warning and a reaction to probably overdoing it.

The “special treatment” is not necessarily specialists, or asking for “special treatment” it’s just appropriate treatment for ME, which apparently has to be spelt out very s l o w l y for all the clever medics at the back who profess to know better.

When it comes to things like travel etc then whilst neither perfect for all nor special there are some departments that are used to working with people who have conditions that make them ill or exhaust them and as part of that do things like always considering if an appointment can be done by phone instead and the timings (although when it is all patients and some will have to be in person there are limits etc).

I assume that understanding comes from what those in healthcare seem to call compassion (where I'd use the term empathy or understanding more it seems to always be the term used by those I know who work in such areas) and probably comes from those running the department leading on it but I don't know.

I think there are lots of things process-wise that could be done with the right set-up of people given the right support/power to be able to do the things that are more easily adjusted or offered.

I think there are important changes that need to be imposed on the allied services that either are using one process that works for them (for all) or are indeed deliberately being difficult with pwme and hiding that under a lie that it is because that's 'their system' when really it is people who can't help themselves when they see people vulnerable like us (which I think we will have to ask people to start acknowledging is a possibility otherwise we find it impossible to have these conversations if that is some third rail, when it is what actually perhaps inadvertently underlies a lot of what people do without even themselves realising it because they see us as less deserving anyway as they don't get they aren't 'being kind because we are just tired' etc).

I suspect there are a lot of straightforward, normal people in other healthcare positions who with the right, straightforward options and information would/could be safe if the unsafe influencers were moved out of the way and forced to retrain their 'beliefs'. And that it is this latter group and the 'added multidisciplinaries' who never had a place but sure want to keep it that are causing them (normal healthcare staff who don't have such beliefs) to think 'stepping out and not getting involved' is the neutral reaction simply because they are mixed up by the idea that people who 'seem nice' in other ways and areas could have done something quite deliberately that is actually in result not kind, nice, harmful etc - humans made to work in teams really struggle with those paradoxes and the stranger ends up getting it because of that 'who gets given the benefit of the doubt' in such social pressure situations where you're surrounded by people you have to work with.

It needs that oversight and expertise to put a kaibosh on what's going on and call it really, otherwise it gets left to these politics and social dynamics. Or worse individuals who don't have other areas where they are allowed to being able to 'just take the initiative' to try and help and then end up doing strange these to either cover it up when it doesn't work or think they've done something great etc.

One good well-informed nurse stopping 5 lots of therapists thinking they are 'do-gooding' because 'it interests them' and just getting the odd one or two who might be needed to do x to only get on with doing x in a straightforward specific way because they have those reins. It would save a lot of splaffed 'resource' too. So there is something about co-ordination and knowledge and then that having some power in a system that ...

plus of course why does a discussion if someone gets something else need more than one expert talking to another person who genuinely knows the situation on the pwme to update them if it needs that input instead of all this very strange ad-libbery.