United Kingdom: ME Association governance issues

[Nightsong]

Attending to the routine needs of housebound patients seems to me something which GPs & nurses should be capable of handling in the main; for non-routine needs we really need services in secondary care, especially for the very severe such as those requiring feeding support or in severe pain. Contractures are about the only complication for which physiotherapy would be indicated although good advice, pain relief, nursing care would seem to me to be preferable for the very severe - physiotherapists tend to have particularly unhelpful ideas when it comes to ME/CFS. For pwME distressed by having a long-term severe chronic illness GPs should be able to refer for counselling (or in the case of severe reactive depression etc developing to a psychiatrist) - as with any other chronically ill patient.

What the NHS offers in those respects is often very far from ideal but I see nothing that requires a psychobehavioural clinic.

I think I've said all that I wanted to say on this, but one final point. I have the distinct impression from a couple of different places that many medical professionals are not particularly happy with the psychobehavioural clinics either. I was particularly struck by a fairly recent PulseToday article about ME/CFS (link) in which the GP author wrote:

Perhaps I only see, post clinic-input, the dissatisfied and disenfranchised. Maybe there are, in fact, many patients with CFS/Long Covid/fibromyalgia/chronic pain who are discharged from their respective outpatients so transformed that they never feel the need to return to me with a ‘What a waste of time that was, now what?’ expression on their face.

and:

Because, to be brutally frank, I can’t think of a single patient who has returned from a referral to a CFS clinic, a Long Covid Clinic, a fibromyalgia assessment or the CBT wing of a pain clinic – each for that ‘holistic’ approach so important in these cases – and said, ‘That was really positive/helpful/constructive’. It just doesn’t happen.

I thought that was particularly curious, and I don't think the author is alone in that impression.

 

[Trish]

I have the distinct impression from a couple of different places that many medical professionals are not particularly happy with the psychobehavioural clinics either. I was particularly struck by a fairly recent PulseToday article about ME/CFS (link) in which the GP author wrote:

That's useful information. I can't access the Pulse article.

 

[Utsikt]

That is the one instance that comes to mind but I don't know if we have any evidence that a physio popping in for half an hour a week makes any difference. In reality, prevention of contractures probably requires continuous attention to resting position by someone present all day - family member or nurse. Even BACME note the advantages of not having too many health professionals all doing separate jobs that in reality could be provided by a single carer.

Please, please, please let me have a good nurse instead of the useless physio and OT that I’ve currently got. They are obsessed with treating me instead of helping me.

I did get some aids out of it, but it feels like I have to endure the suffering of their «help» to get basic needs met, which is both humiliating and insulting.

Just as BPS is based on the unfounded and religion-like conviction that the PS affects the B, rehab is based on the conviction that everyone can be rehabilitated - and it’s just a matter of figuring out how (spoiler: the answer is always exercise).

 

[V.R.T.]

Please, please, please let me have a good nurse instead of the useless physio and OT that I’ve currently got. They are obsessed with treating me instead of helping me.

I did get some aids out of it, but it feels like I have to endure the suffering of their «help» to get basic needs met, which is both humiliating and insulting.

Just as BPS is based on the unfounded and religion-like conviction that the PS affects the B, rehab is based on the conviction that everyone can be rehabilitated - and it’s just a matter of figuring out how (spoiler: the answer is always exercise).

Yes agreed I want knowledgeable doctors and nurses not physio unless I have a specific issue that an ME literate physio can try and help with.

My primary needs are to get educated care to get any other health issues I might have treated promptly and safely. When there is research to participate in or treatments to try I want my clinic to be linked into that too.

Counselling or therapy has helped me a little but safe care would improve my mental health so much more than my therapist has been able to.

 

[Utsikt]

Counselling or therapy has helped me a little but safe care would improve my mental health so much more than my therapist has been able to.

All I’d need to talk to the therapist about is the trauma from the abuse from the HCPs that were supposed to help me, and the helplessness I experience when having to continue to engage with them to please systems or people around me.

If the MEA and the other organisations could understand that the help is often so bad that no help is better than getting help, so they have to stop just asking for «more help», so many lives would be improved.

 

[V.R.T.]

All I’d need to talk to the therapist about is the trauma from the abuse from the HCPs that were supposed to help me, and the helplessness I experience when having to continue to engage with them to please systems or people around me.

This is the most traumatising thing to me too. I have spent so much time talking to my therapist about it (when I can tolerate short phone calls), and it ironically all could have been avoided if my GP wasn't so concerned about my mental health six years ago.

 

[Cinders66]

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I am interested to know what you think they can offer? For moderate cases they seem to be counterproductive. For severe cases I am unclear what they would provide that could not be provided by family and nurses. As far as I can see they have no special expertise or theoretical knowledge when it comes to ME/CFS - quite the opposite on the whole.

You seem to assume everyone has a wrap-around family (or a nurse) on hand for emotional support or care, which is a rosy view. There can be great unmet need, or deeper issues where a counsellor or clinical psychologist might be better. My profound cognitive deficits make just "being" distressing, as well as everything else that occurs as a result of losing half my life to being bedbound in a dark room. The prolonged devastation from severe ME causes distress, like any serious illness, of suffering and loss. Support should be standard for such illnesses.

It’s helpful to have a counsellor with experience of severe illness, so you don’t have to explain issues about living with severe illness to others. I think the NHS should provide this for any severe illness, whether it’s ME or not. I’ve done private text counselling, and half the energy I already didn’t have went to explaining illness issues, instead of getting immediate support, although I guess there’s more generic information to provide background around now than then.

Regarding physiotherapy, I have two contractures and rely on many carers with their own injuries and joint issues for the Passive stretches I need, which are difficult because of my misaligned knees. We need advice to keep us all from any damage. I don’t want half-hour weekly visits, but I need more than the rushed 3 I had after months of waiting for the community, which didn’t set us up properly. I want to be able to reconsult as/ if needed. I have hypertonia, so I’d like neuro physio, but that’s unlikely.

 

[Jonathan Edwards]

You seem to assume everyone has a wrap-around family on hand for emotional support or care, which is a rosy view.

I am not suggesting that. When I had to nurse my wife with paranoid psychosis singlehanded for most of a year, in addition to acting as some parent to a schoolchild I was very aware of how little support ill people get. It applies to all families with chronic illness.

The question is what things need a psychologist or physio specifically. You talk of help fro a counsellor and that makes sense but a counsellor does not need to be a psychologist and from what I have seen it is much better if they are not. Psychologists apply their bogus 'ology' to theorise about illness in ways that, as we have all seen, are totally counterproductive for ME/CFS. I see no reason why a specialist nurse cannot be an excellent counsellor. I cannot think of anyone better than Caroline Kingdon, who apart from being a nurse is universally recognised as a hugely supportive carer by the patients she sees in her research.

And for the physio, I would say the same. Preventing contractures has to be built in to nursing care from day one. It isn't something you can delegate to a physio visiting now and then. And once they are there intensive rehab efforts probably make no difference. I am very doubtful that neuro physios have any special expertise in this. I worked in rehab many years ago and what the physios did was always based on beliefs about this or that method, without any evidence. Every ten years or so the favoured method would reverse to something opposite.

 

[Jonathan Edwards]

I am increasingly seeing campaigning for 'special ME/CFS services' as a seriously counterproductive move from advocacy groups. As long as ME/CFS services are seen as separate from mainstream medical services they will be run by third rate people who do not understand. We never had special services for RA. Managing RA was just an integral part of the rheumatology clinical service. Same for almost everything. A few conditions had special clinics for logistic reasons - diabetes and lupus for instance - but still within the same departments (endocrinology, rheum.).

The government seem to be thinking they can tack on special mild/moderate ME/CFS services, tucked away somewhere cheap in the community. That will be even worse than we have now. People need care in the community in the sense of care at home but that has nothing to do with care from community units in the sense of being commissioned from Community Trusts, which are supposed to be cheaper. Support at home is even less likely to be provided by such units than units based in hospital departments with outreach services or able to request input from general district nurse services. There is nothing very special about looking after severe ME/CFS. We know so little about it that care has to be based on general medical principles. As soon as it becomes special ME/CFS care it ends up with therapping and rehab.

I have a nasty suspicion that the government plan will push things completely in the wrong direction.

 

[Sasha]

I am increasingly seeing campaigning for 'special ME/CFS services' as a seriously counterproductive move from advocacy groups. As long as ME/CFS services are seen as separate from mainstream medical services they will be run by third rate people who do not understand. We never had special services for RA. Managing RA was just an integral part of the rheumatology clinical service. Same for almost everything.

Is part of the problem that we don't belong to a particular discipline? For example, we're not in rheumatology so we can't get normal rheumatology care?

The government seem to be thinking they can tack on special mild/moderate ME/CFS services, tucked away somewhere cheap in the community. That will be even worse than we have now. People need care in the community in the sense of care at home but that has nothing to do with care from community units in the sense of being commissioned from Community Trusts, which are supposed to be cheaper. Support at home is even less likely to be provided by such units than units based in hospital departments with outreach services or able to request input from general district nurse services. There is nothing very special about looking after severe ME/CFS. We know so little about it that care has to be based on general medical principles. As soon as it becomes special ME/CFS care it ends up with therapping and rehab.

I have a nasty suspicion that the government plan will push things completely in the wrong direction.

Scary.

 

[Trish]

I am increasingly seeing campaigning for 'special ME/CFS services' as a seriously counterproductive move from advocacy groups.

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.

 

[Jonathan Edwards]

Is part of the problem that we don't belong to a particular discipline? For example, we're not in rheumatology so we can't get normal rheumatology care?

That is the whole problem, in another formulation.

 

[Jonathan Edwards]

I have no idea whether their current trustees even understand the problem.

My worry from engaging with Forward ME is that nobody in the advocacy sector understands the problem in medical terms - except patients and carers who still deal with being seriously unwell who have been around for long enough to come to see the reality, particularly those who knew the system before it finally collapsed around 2010. A major part of the problem as I see it is that people who have had ME/CFS and are now reasonably well and able to get involved in meetings have no understanding of these realities and campaign for the wrong thing.

 

[Sasha]

That is the whole problem, in another formulation.

We may have talked about this before, but what will be the trigger for getting us put into a particular speciality? Formally published DecodeME results? A positive dara trial? Something else?

 

[Kitty]

If the MEA is to change direction on its current all-in support for the BACME rehab model, they need leadership from the top.

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.

 

[BrightCandle]

We can't win right now because no one is willing to accept the whole problem completely as it actually is, everyone is trying to downplay and distort how bad the situation is. If you make the existing services and departments treat us they will do what they always have and distort the disease and continuing what is currently happening and more will die and be abused. If you make a new service the government will make it a cheap nurse led system that triages us out of the system and more will die and be abused.

The only route forward is a specialist run ME service with specialists running things. This involves building new facitities that are designed around our needs for lighting and noise and enteral feeding, for food and water needs being met without leaving our beds. No NHS existing facility is suitable for us so it can't be there and it has to be distributed across the country because we can't go far and it needs ambulances to move people about horizontally with hoists and the ability to lift people out of their homes. So far I have seen no signs from any of the charities that they understand what this should actually look like and its this vision we really need from the governance to drive this vision of what a specialist service should look like and be able to do once its in place. It almost certainly needs to be something patients refer themselves to directly, because GPs are a part of the problem and likely will be for decades.

I don't think it is even possible at the moment because there are no specialists to run things, I can see a future where they are using the existing GPs with interest and the studies to build such a speciality but its an intricate dance to get from here to there and that requires real buy in from government and the NHS, both are fighting hard against doing anything. But I think if our representatives accepted the level of prejudiced treatment and so many are harmed and dying from it they might finally see what the right solution is and we need a joined up picture of pathway and care for all the levels of the disease and how treatments can occur where the existing system dismisses us.

 

[rvallee]

Just as BPS is based on the unfounded and religion-like conviction that the PS affects the B, rehab is based on the conviction that everyone can be rehabilitated - and it’s just a matter of figuring out how (spoiler: the answer is always exercise).

As much as the biopsychosocial ideology is more of a belief system than anything, the weird thing about rehabilitation being infallible looks a lot like simple disconnection from reality, mixed with a belief system. It fully stems from the idea that the only disability is a bad attitude.

It's so hard to understand how this can still be a thing. Even 50 years ago it was absurd to believe that. There is literally no evidence even hinting at this being a real thing, it's even more delusional than believing the sun is a god because, well, the sun is a real thing out there every single day.

 

[rvallee]

I am increasingly seeing campaigning for 'special ME/CFS services' as a seriously counterproductive move from advocacy groups. As long as ME/CFS services are seen as separate from mainstream medical services they will be run by third rate people who do not understand. We never had special services for RA. Managing RA was just an integral part of the rheumatology clinical service.

That is pretty much what most of us mean by specialist ME/CFS services. A rheumatology clinic is a specialist service. Not specific to a particular disease, but specific in that they have applicable competent knowledge.

Chronic illnesses like ME/CFS won't be managed by GPs until there is a simple test and medication to treat it. It will require some specialty of medicine to own it, simply to develop those. Right now the problem is that the wrong people are in charge of it, but it doesn't change the fact that someone has to, because otherwise no one is. Having the wrong people in charge is worse than having no one in charge, but right now there are people loosely "in charge", though without any actual responsibilities for it, so what people are asking is to change that.

The big problem is that normally those things happen more or less competently, whereas they are not with us. It doesn't change that the way forward passes through at least some level of specialist care, if only to simply develop the expertise. Just because it hasn't happened and seems impossible to achieve doesn't change those facts.

Ultimately it's about responsibility. The current model involves no responsibility, outcomes literally don't matter. It doesn't matter who is involved in those conditions, this is failure by design. Someone has to be responsible, accountable, it all begins there, but all evidence suggests that no such thing actually exists in health care. It looks more or less like a "whoever grabs it owns it and if no one does then whatever".

 

[Utsikt]

That is pretty much what most of us mean by specialist ME/CFS services. A rheumatology clinic is a specialist service. Not specific to a particular disease, but specific in that they have applicable competent knowledge.

I’m sure you mean that, but I can’t say the same for the associations.

 

[V.R.T.]

That is pretty much what most of us mean by specialist ME/CFS services. A rheumatology clinic is a specialist service. Not specific to a particular disease, but specific in that they have applicable competent knowledge.

I think this is a very important point. It shouldn't be up to us to word things perfectly so NHS administrators and BACME can't twist our words and give us GET 3.0: Now With More Patronising Bullshit.

Patients want to be treated by doctors who understand the condition and given adequate care. That is what they are all asking for, more or less.

A thought- a campaign to unify people around the 'physician led service with specialist nurses' phrasing might be beneficial?