The Agreed Care/Activity Plan

Jonathan Edwards said:
I don't think anyone is suggesting anything new is happening. Quite the opposite, the concern is that it is more of the same.

What I was trying to pinpoint is that both the NICE Guideline (2021) and the BACME document on severe ME/CFS use this terminology of 'agreeing a plan' and focus on it as if it were highlighting an enlightened new person-centred approach to care. But to me it also carries the paradoxical implication that patients still have to agree to do their bit - and will find they are in trouble (even if it is claimed not) if they don't stick to it.

It is the double-speak that worries me. Like the double speak of 'tailored care'. The argument there is that there is no reliable evidence for any particular therapy so therapists should 'tailor the care' to the individual. But if there is no evidence that the therapy works at all, there will be even less evidence for anyone knowing how to tailor it.
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Hence PROMS
Assessment and evidence in one woolly defined, double meaning-ed "applicable to all severities" , something for everyone scale .

What could possibly go wrong?
 
Jonathan Edwards said:
I found it interesting to see Lynne Turner Stokes strongly arguing that we need less of controlled trials and more emphasis on judging therapies from 'seeing them work' in routine practice
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Anti-science, and proud of it.
Evergreen said:
I think they got obsessed with us because we stubbornly can't comply and don't improve despite being, in their minds, needlessly disabled.
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They are indulging, at our expense, in a particularly extreme and cruel example of the sunken cost fallacy.
 
Sean said:
Anti-science, and proud of it.

They are indulging, at our expense, in a particularly extreme and cruel example of the sunken cost fallacy.
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I've found this elsewhere for post-op for something else. I think there is more going on and don't really know from the phrase 'research' whether there is anything even evidencing that properly.

There is a belief-system issue potentially just in 'belief-systems know best'. As we know, this sort of thing being used as a blanket concept and the 'expectations' stuff has been something that really has been problematic for those ill enough with ME/CFS that this sort of thing basically hurts them.

I don't think the 'evidence' Lynn claims is even there that people use any kind of 'individual' or 'tailored' in sucking in and implementing 'at' or 'onto' people these ideologies?


"The sooner you start moving, the quicker you will recover.

End “PJ paralysis”

Research shows that if you remain in your pyjamas and spend too much time in bed in hospital you rapidly lose muscle strength, fitness and your ability to walk safely and independently.

By sitting out in your chair to wash and eat, and by getting dressed in your own clothes and footwear, you are much more likely to:
• Regain your independence and retain your dignity
• Reduce your care needs on discharge from hospital
• Reduce the need for urinary catheters and the risk of constipation/continence issues
• Potentially reduce the length of time you spend in hospital Getting up and dressed is something we will expect you to try and do every day.

Please ask a family member or friend to bring in some appropriate loose fitting clothing and slippers or shoes and toiletries for you as soon as possible."


EDITED to add: In fact I'd go so far as to say, being expected to do so appears to be the real issue causing 'oppobrium' for 'rehab'. SO all the words being said are clearly just nonsense trying to get away with it by persuading those who aren't going to be damaged by it (which will include those with ME/CFS but less ill, and who do need to somehow be asked to stand up for those in the most vulnerable positions) to let their attitude pass. Normally by justification by rhetoric and doing down the individual.
 
bobbler said:
I've found this elsewhere for post-op for something else. I think there is more going on and don't really know from the phrase 'research' whether there is anything even evidencing that properly.

There is a belief-system issue potentially just in 'belief-systems know best'. As we know, this sort of thing being used as a blanket concept and the 'expectations' stuff has been something that really has been problematic for those ill enough with ME/CFS that this sort of thing basically hurts them.

I don't think the 'evidence' Lynn claims is even there that people use any kind of 'individual' or 'tailored' in sucking in and implementing 'at' or 'onto' people these ideologies?


"The sooner you start moving, the quicker you will recover.

End “PJ paralysis”

Research shows that if you remain in your pyjamas and spend too much time in bed in hospital you rapidly lose muscle strength, fitness and your ability to walk safely and independently.

By sitting out in your chair to wash and eat, and by getting dressed in your own clothes and footwear, you are much more likely to:
• Regain your independence and retain your dignity
• Reduce your care needs on discharge from hospital
• Reduce the need for urinary catheters and the risk of constipation/continence issues
• Potentially reduce the length of time you spend in hospital Getting up and dressed is something we will expect you to try and do every day.

Please ask a family member or friend to bring in some appropriate loose fitting clothing and slippers or shoes and toiletries for you as soon as possible."


EDITED to add: In fact I'd go so far as to say, being expected to do so appears to be the real issue causing 'oppobrium' for 'rehab'. SO all the words being said are clearly just nonsense trying to get away with it by persuading those who aren't going to be damaged by it (which will include those with ME/CFS but less ill, and who do need to somehow be asked to stand up for those in the most vulnerable positions) to let their attitude pass. Normally by justification by rhetoric and doing down the individual.
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Another classic:

"It is important that you practise walking with the nurses to and from the toilet/bathroom where possible, to get you back into your normal daily routine. This will help to build your strength and confidence."

Doesn't sound like it is based on much more than some 'judgement' and with no room for comorbities here.

I can't imagine anyone with ME/CFS losing 'confidence' with going to the loo should their health return and allow them to get there.

This sort of 'attitude leads the way' (and I mean bigotry attitude and coercion, they just don't realise putting a pretend 'it's CBT' crap on it doesn't change that) isn't science or medicine now is it.
 
tuppence said:
In the 1960’s my parents worked in a very large Mental Hospital, my father as a manager and my mother as a nurse. Housing was provided for quite a lot of the staff and as a young teenager that was my home environment for 6 years.

Psychiatry has not produced a cure for any medical condition that I am aware of. What it was very good at before the 1950’s was taking so called ‘bad or mad behaviour’ and removing it from sight by locking people away. Psychiatries next big breakthrough was to create a chemical concoction in the 1950’s that did a very good job at controlling diagnosed difficult, bad or mad behaviours.

In the school holidays I helped out in the hospital dispensary counting out pills to fill the scripts that came in daily. The pharmacist would give me huge jars of ‘largactil’ and tell me how many pills to count out against each scrip. My work was of course checked that the right medicine was being sent out. It was called the ‘chemical cosh’ by Doctors and nurses and was by far the largest dispensed item from that pharmacy. In the end it was this family of drugs that meant patients could be treated in the community provided the patient complied or was compelled to take the drugs.

Wessely and co’s breakthrough for Psychiatry in terms of expanding the specialisations future is to expand the diagnosis of ‘unacceptable behaviour’ to all chronic illnesses for which the causation is not or only poorly understood and for which biological medicine has no cure or even worse an objective diagnostic marker. Wessely and co answer that situation in the time honoured way of Psychiatry by saying it is not Doctors or Societies fault that these patients cannot be cured of exhibiting chronic illness which is not life threatening, but it is the fault of the patients bad behaviour. They claim without evidence that ‘Psychiatry’ can take care of that, if only we can force the patient to engage. Psychiatry has always operated by seeking to control bad/mad behavior and society has always largely granted them the tools to try to do the job.

That Wessely and co pitch is attractive to powerful forces like politicians, insurers and hard pressed Health Service Providers, however they are funded. They in effect place the whole burden of the patients chronic ill health wholly on the patients with the tragic results we the recipients all feel and see, but the public very largely don’t.

That is the minefield we are in and it is a struggle for power. We have to use what power we have to navigate that minefield to keep as safe as we can. It is what I saw the patients in the mental hospital do even though they had little power. I saw their little acts of resistance and I saw the forceful pushback by those who cared for them. Even the most stubborn amongst the patients were ground down in pretty short order by the chemical cosh and blended into the background as a result.


Today we have a slightly better distinction between bad behaviour and mad behaviour so if you are just diagnosed bad and not Mad your power is always to ask for something better. A start is choosing to work with those who show willingness to listen carefully to you and who respect your right to withhold consent to that you can show them has been harmful to you. Most will not accept that what usually works in general care, wont work in ME.

The issue of informed consent is our major weapon and the battlefield over which we all struggle. That is the limit in progress we have made as a society. The diagnosed bad are not necessarily defined as Mad as they once were, but Wessely and co are doing their utmost to expand the reach and breadth of Psychiatry by diagnosing new areas of ‘bad’ behaviour which Psychiatry can claim for themselves. The process appears to me entirely money driven, with the well being of the patient a distant afterthought at best. It is the only rational explanation I can apply to the BPS continued behaviours ie they derive economic and power benefits from their activities. If they were interested in patients well being they would have stopped years ago given the failure of their hypothesis and treatments.

In navigating this battleground my late wife found that she always had to consent to try something in order to physically demonstrate the resultant harm. The tried treatments\therapies brought no benefits and always made her worse with the HCP recognising this and stopping the treatment\therapy. She only ever consented to this with Doctors who listened and accepted the biological basis of her illness, which they variously diagnosed as PVFS/ME and later ME/CFS.

Her plan, having tried to assess just how harmful it might be was to say; OK I will try this as long as we keep it under review and when it has made my illness worse it will be immediately discontinued. I don’t know if that is a care plan or a negotiated contract, voluntarily entered into by two parties with each being trusted to honour the contract.

Ideally my late wife would have wished to withhold consent for most of these trials if not all of them. It was the price she paid for access to support with benefit claims and getting a blue badge etc. It was her side of another economic exchange and also saved her from even worse medical care from those who do not accept ME/CFS as a biological illness.

This compromise of hers gave her much longer periods of being in control of what happened to her own body, but not complete control. That will take a sea change across Medicine and Society as a whole. Words and agreements are not enough it is the way they are actioned, implemented and used which counts, too often this is done very badly.
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What an amazing personal story, bearing witness to the progression of psychiatry over the decades, and as it crossed into chronic illness of any sort in an organised form.

I would of course agree that the primary motivation was economic. I’d add that pursuit of resource dominance and pursuit of domination more broadly do tend to go hand in hand. I think increasing their power by decreasing ours was very much a desirable way to proceed for them, rather than a regrettable outcome. They’re nothing if not enthusiastic in their endeavours.
 
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