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

He does, by zoom at Spire, Bushey on a Thursday afternoon. Someone else may know if any patients are seen face to face.

 

I had appointments with one of those retired physicians every year for several years, & he also produced a report to help with my DWP claim - the report & the letters to my NHS GP refer to "ME/CFS" throughout.

 

Useful to know.

 

Update: 11 April:

Etta Loveday
@EttaLovedayME

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9:24 AM · Apr 11, 2024

 

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". !

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.

 

A case from the US from 2021, https://www.meaction.net/2021/01/29...-person-with-severe-me-to-mental-health-ward/

 

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

 

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

 

These are the guidelines they have to follow. Trouble is, when you spend decades ignoring the most severe and siloing them, in dualistic way, you learn nothing. That's why they're stuck = so when there's something strange in the neighbourhood, so who ya gonna call...

BAPEN Principles of Good Nutritional Practice – Decision Trees | BAPEN

 

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.

 

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.

 

Regulation 14: Meeting nutritional and hydration needs - Care Quality Commission (cqc.org.uk)

Regulations for service providers and managers - Care Quality Commission (cqc.org.uk)

 

Good links - it could be a good idea for the families of these patients to get the Care Quality Commission to look into these cases.

 

Invest in ME - Statements of Concern about CBT/GET provided for the High Court Judicial Review of February 2009

 

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.

 

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.

 

I asked her if they were part of the study and she said they hadn't heard of it!

 

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.

 

Sophia's voice 2005.
Severe ME Week 2020: Sophia's Story - The ME Association

Ditto for me.

ETA: standard treatment for PPD is CBT. That was not even suggested when I was sectioned between the beginning of October 2020 - 2nd February 2021. The only CBT I had was in BATH.

ETA2: When Avon & Wiltshire Mental Health Authority finally made contact with me, outside of the prison that is despite pleas from the Police and social services prior to my arrest, they failed to attend. When they wrote to upon my release, that letter stated that my diagnosis was Paranoid Personality Disorder and Anorexia Nervosa. That was the first I'd heard of either! Apparently, the DWP stopping your benefit because you have no phone or anyway of contacting them when they write to you the response you receive is that they are stoping your benefits because 'it is the law' and you are given no other explanation, and if you can't contact them, you end up dead. This is my third time up for air to try to save this girl from suffering the same fate I did.

ETA3: On release back home the manager of the probation service was waiting for me, and on the front step was a large box of food and my jacket waiting for me. It was from the police beat manager who had arrested me several times when I was unable to physical attend court in Bristol 12 miles away. He'd let himself in as they had changed the locks and he checked my cupboards because he knew I had no food, and that my cats had died. It was the reason I wasn't consenting to any help, because it was already too late. This is Cygnet. As I again have concerns about the security of my laptop I have just made an urgent call to Apollo. That is what you do when you have concern for the safety of others.

ETA4: About Cygnet - Cygnet (cygnetgroup.com)

ETA5: The ME Association will send free of charge a copy of their purple to any GP. All you have to do is ask them. ME/CFS: The care you should expect - The ME Association

ETA6: You know we'd all like to get back to some kind of life and not spend it forever chasing down lack of integrity, and making sure you do no harm. this is not OUR JOB. Bout bloody time you did yours.

ETA7: Section 20 Duty of Candour it is a face to face requirement. Failure to do so can result in a prosecution. But then the CQC would need to doing theirs and not ignoring complaints when a duty of candour issue is risen. I have a case number somewhere! I certainly don't need your talking therapies to deal with the 'trauma induced' process which this hospital and all other institutions have put this and other illnesses through since 1957. There is a research paper which I can't find at the moment but this debate has been going on sincce jthen. I was just a twinkle in my father's eye. But I distinctly remember the emphatic words in the conclusion of that paper state paraphrasing this is not a psychiatric illness.l

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