United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

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I just came across this on Twitter, has anyone else here seen it? Yet another young woman with severe ME, Carla, is being abused in an NHS hospital. They are refusing to follow NICE Guidelines on ME, saying "they don't apply at this hospital". !
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What on earth? Do NICE Guidelines for cancer, heart disease etc also not 'apply' at that hospital? This is not something I've heard of before; can hospitals just pick & choose whether NICE Guidelines 'apply to their hospital' or not according to their own whims? If so, this is a frighteningly dangerous situation for ALL patients, not only those with ME.
 
I searched the document* for a few key words (didn't read it) and noticed this - "Thane initially posted in a twitter thread about his situation:

“A week ago I voluntarily admitted myself to the hospital to get help [because] I am losing weight as a result of increased food intolerances, secondary to my very severe #MECFS. A psychiatrist here decided that [I’m] mentally ill…”

@Jonathan Edwards posted this (here**) -
"It may be that people with very severe ME/CFS in the USA are getting gastrostomies or being treated as psychiatric or whatever but we don't seem to have any information on that. If they are being managed well and improve enough to manage without feeding support we all need to know how it is being done."
So yea, that maybe a route i.e. keeping people alive in the US.
I also noticed that one of the responses* was asking whether there were any lawyers working in the area on a "pro bono"/fee if they win basis - the US may be more litigious etc. - might help to focus minds! The phrase - "I love the smell of napalm in the morning" comes to mind - just substitute a "multimillion dollar lawsuit"!



* https://www.meaction.net/2021/01/29...-person-with-severe-me-to-mental-health-ward/
** https://www.s4me.info/threads/unite...roblems-in-the-media.32047/page-8#post-525963
 
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UPDATE on Carla.

We spoke with the family, supporting them writing a letter to PALS making a formal complaint.

The psychiatrist 'treating' Carla was linked to PACE trial crew & involved in the inception of the disastrous 'liaison psychiatry' model #BringMillieHome #DontLetMEDie
 
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Following NICE guidelines is not, as I understand it, compulsory.

But ignoring them or doing an end run around them via re-diagnosis away from ME/CFS, particularly in such a wilful arrogant reckless manner, is running the risk of serious lawsuits, and even being struck of the medical register in the worst case.

Which may be what it will take. Being non-compulsory is not a get-out-of-jail-free card. Guidelines remove the excuse of not knowing.
 
Sean said:
Following NICE guidelines is not, as I understand it, compulsory.

But ignoring them or doing an end run around them via re-diagnosis away from ME/CFS, particularly in such a wilful arrogant reckless manner, is running the risk of serious lawsuits, and even being struck of the medical register in the worst case.

Which may be what it will take. Being non-compulsory is not a get-out-of-jail-free card. Guidelines remove the excuse of not knowing.
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This is how I've understood NICE Guidelines to operate too, that they're not compulsory as such, not rules written in stone, but guidance that one should follow for Best Practice. But to come out and say NICE Guidelines "don't apply at this hospital" is just outright flouting of Best Practice.

Such behaviour should indeed result in serious lawsuits and strike-offs, but this never happens in the UK. It sorely needs to - somehow. Unfortunately in the NHS they just close ranks, instances of negligence get swept under the carpet, 'nothing to see here', and there's no realistic economic opportunity for the average patient to be able to sue; it would cost a fortune and you'll likely lose, because you're up against a government organisation who have unlimited money to spend on their defence.
 
Sean said:
Following NICE guidelines is not, as I understand it, compulsory.

But ignoring them or doing an end run around them via re-diagnosis away from ME/CFS, particularly in such a wilful arrogant reckless manner, is running the risk of serious lawsuits, and even being struck of the medical register in the worst case.

Which may be what it will take. Being non-compulsory is not a get-out-of-jail-free card. Guidelines remove the excuse of not knowing.
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I know someone who is an NHS casualty Doctor (though they work through an agency - lots do!) they tell me that they're extremely careful i.e. to meticulously record care & why they've done "X" - legally defensible. They regularly gets asked if they'd like to work somewhere new i.e. by former colleagues - excellent Doctor.
Failure to provide legally defensible care could (as per @Sean ) lead to:
  • a disciplinary hearing (Doctors professional body); and/or
  • the employer/trust having to defend a claim for damages - likely to be costly i.e. potentially even if the trust wins.
 
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I had bloods taken today lovely young trainee nurse doing a home visit. My usual lady is on holiday. My young lady today told me she also has ME and has had it since she was at school. I also discovered that her sister who is also a nurse, and also has ME/CFS also had it as a child. They had difficult at school always being told that they weren't working hard enough. They both work reduced hours and do pacing. Their mother developed ME/CFS when she was in her mid twenties and is very disabled now. How on earth does this hospital treat it's own staff?

ETA: probably denies ill health retirement, as happened to me on the grounds that it was not a permanent condition. Mine was from an 'expert' engaged by Oxford Brookes University. I reached state retirement age at the end of March.
 
Maat said:
I had bloods taken today lovely young trainee nurse doing a home visit. My usual lady is on holiday. My young lady today told me she also has ME and has had it since she was at school. I also discovered that her sister who is also a nurse, and also has ME/CFS also had it as a child. They had difficult at school always being told that they weren't working hard enough. They both work reduced hours and do pacing. Their mother developed ME/CFS when she was in her mid twenties and is very disabled now. How on earth does this hospital treat it's own staff?

ETA: probably denies ill health retirement, as happened to me on the grounds that it was not a permanent condition. Mine was from an 'expert' engaged by Oxford Brookes University. I reached state retirement age at the end of March.
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One of the suggestions I've heard is to do whole genome sequence studies/rare variant studies on families with more than 1 member effected - including at least 1 severe.
 
Nightsong said:
Also, the general healthcare culture in the US, for all its faults, is far more consumer-oriented; by contrast in the UK there still persists the attitude that the patient should simply be grateful for whatever they get from the NHS.
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Consumer-oriented does have something to do with it, I think. It is a ridiculous aspect of our system that health insurance is a standard employment benefit rather than something that one actually just gets for being a human being. Having said that, as someone with decent private health insurance through my Berkeley position, I have pretty much complete freedom to choose doctors. That can be in San Francisco. It could ge in Los Angeles. If I wanted to see a specialist in New York, it would be covered, although perhaps I'd have a larger co-pay. And if a physician was mistreating my kid, I'd take them to a doctor I felt was more on top of things.

This happens all the time. Of course it gives licenses to doctors who might be awful or just saying what patients want. but it also goes a long way, I think, to helping people avoid the kinds of terrible situations we see happening here at the moment. I have heard of only one such case in the US, about ten years ago. It's always possible cases are happening that we don't hear about, but I think at this point if they were happening, we'd know.
 
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