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

A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS
31st May 2023
https://mecfs-med-ed.org/2023/05/31...e-daughter-maeve-died-at-27-of-severe-me-cfs/

 

I noticed this quote tweet:

It makes me wonder whether he [Dr Strain] was consulted regarding the case at some point.

 

A devastating read.

ETA: Will be interested to see in the Inquest if there was a single healthcare practitioner - anyone - who stood up and said "this is wrong."

 

There seems to be an ongoing problem of assisted nutrition being withheld in cases of Very Severe ME as the diagnosis is so often flipped into something psychiatric or the disease itself is seen as psychiatric.

The CQC have ensuring the provision of adequate nutrition in the NHS in their remit. They should rightly be concerned, as should NHSE, and have been alerted - and of course there is a paper published by Dr Weir, Dr Speight, and Helen Baxter on dangerous malnutrition in VSME.

I think the NSPCC should also be alerted if children are being denied timely assisted nutrition. This potentially gets tangled up because social workers can simultaneously be involved in trying to get the children taken away from their parents because the parents have been accused of FII, despite the NICE Guideline warning against this and guidance for social workers also out there warning about this.

But this dangerous delay of assisted nutrition seems to be happening in a wider picture, for example of the same thing happening to people with genuine eating disorders, and even more broadly, with patients being admitted to hospital from nursing homes because of dehydration - simply not being given food and fluids - and patients in hospital too unwell to eat and drink unaided being left hungry and thirsty. This even though it's the law that if BMI falls below a safe level nutrition must be provided.

 

Pay-walled (UK) Times article:

 

https://twitter.com/user/status/1679566478209605633

 

The full article can be read here: https://archive.is/Bt0Lz

 

I don’t really understand what the hell is going on in the UK. Even if you believe the problem is psychiatric, when the case becomes this severe you still manage it medically. It’s done every day with severe cases of anorexia, depression etc. so I don’t understand what the issue is. The cause of illness is irrelevant when it comes to keeping the patient alive.

 

But truly delusional people who think their guts are rotting or that they can’t swallow get medically treated all the time to give them nutrition by other means. So why are we being singled out for death?

 

Sean O'Neill has an article in The Times (hard copy) today.
It is based on the article posted online yesterday ( see #87) but the chart of inquest delays has been removed as has the other case study apart from Maeve.

The article is in a prominent place, top right of page 11 with a large photo of Maeve and the small one of Sean and Maeve. It takes up more than half the page. As far as I can see, the wording about Maeve is the same but these sections stood out for me.

" an inquest is required to examine some of its [Royal Devon and Exeter hospital] clinical decisions including the refusal to offer procedures that, in my view, might have saved Maeve's life."

"Such is the delay [ in holding the inquest] I am sceptical that lessons will be learnt for the treatment of the tens of thousands of people with severe ME who suffer silently in their homes, hidden away and forgotten or stigmatised by a health service that often questions whether they are really sick or just feigning illness."

"Delays mean the quality of the inquest process will inevitably be diminished, witnesses become untraceable, documents get lost, memories fade and lessons are learnt too late to prevent more deaths."


Sean's are powerful words and speak to the consequences of an inquest delay for Maeve's family and others suffering from ME. Sincere sympathies to Maeve's family.

edit:the whole of page 10 is given to an article by Sean on inquest delays headed Crisis in Coroners' courts. Top half of Page 11 gets most visibility.

 

https://www.facebook.com/search/top?q=me association

Comment by Charles Shepherd on MEA facebook page.

 

I can't get it on that link now. Then I went in on ME Association facebook and it is there. It's basically the online Times article with a short statement from Charles Shepherd.
https://archive.is/Bt0Lz
"Very disappointing news in The Times from Sean O'Neill about the continuing delay in holding the Inquest into his daughter Maeve
Hopefully this will have some effect on the powers that be
Dr Charles Shepherd"

That last sentence is where the hope lies but judging from the statistics on numbers of inquests outstanding - see online article- we're not looking at a short time frame. No harm in raising it as an issue however.

 

Moved from Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023
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youtube video of Times Radio interview with Karen Gordons father
The woman being denied the NHS care she needs to treat her ME

The woman being denied the NHS care she needs to treat her ME - YouTube

 

Let me transcribe.
Michael Gordon: They're making her life impossibly difficult in hospital, but they won't give her community care either. The community virtual ward service is saying they won't give IV fluid support on the community. So we can't be in hospital, we can't be at home. So we're just feeling totally helpless and isolated.

Host: ...treatment for severe ME is complex and difficult. In May, a report by Action for ME concluded that people with the condition are routinely being failed by the health service. Now, when we covered this story, we had a huge response from listeners. We heard from the family of Karen Gordon who is now 36 and has been suffering from ME since she was 10. She can't eat on her own and has to be fed through a tube. Her family says the local NHS trust is not providing the care she needs. And since we spoke at the end of May, things have gotten much worse. Karen's father Michael joins us now. Morning to you, Michael.

Gordon: Hello there.

Host: Tell us in what way things have got much worse.

Gordon: Well, as you said, Karen is fed and water and is administered through a feeding tube, which is called a PEG-J, which goes into the tummy and direct into the bowel. As you've just said, Karen's only recently been discharged from a horrendous 14-month admission with the same hospital group. But over the weekend, the tube blocked, which means that we couldn't actually administer any water or any feed into Karen, and that's her only way of getting feed and fluid. On Monday, we were admitted to the Conquest Hospital at Hastings via the ME service at the Eastbourne DGH as an emergency. But when we got to Hastings, they were told that Karen couldn't have a single room, and neither could Heather stay overnight with Karen.

Host: And why was that, was it because they just didn't have the space?

Gordon: Well, they're saying they didn't have the space into the single room and they're saying it's policy in terms of parents not being able to say with relatives overnight. We did manage to get a stay of execution in that Heather, my wife and Karen's mum, was able to stay last night overnight. But that was after a whole day of extremely long discussions, which was all very stressful. And as you can imagine, it's very stressful for Karen already. The last we want is for this extra aggravation. Karen was quite clear and told the nursing hierarchy that she was unable to cope with a hospital stay without Heather there 24/7. She needs the care that only Heather can provide with the experience that Heather has gained over the many years that we've been supporting Karen. She's got special care needs, which can be immediate, so there's not always nursing staff around. And it can only be done by Heather as she knows how best to help Karen, and that's all we want.

Host: Now, how did the NICE guidelines come into this? Becuase I think the hospitals quote those guidelines saying they have to be followed.

Gordon: Well, yesterday...it's the nursing hierarchy who are absolutely refusing to acknowledge Karen's need, that it's a preference and not a need. Well that's absolutely wrong. It is a need. And
they are saying that the NICE guidelines (the person we spoke to yesterday) are, what they say, guidelines, and if they can't follow them, they can't follow them, or if they don't want to.

Host: So it sounds like, (I mean, again, I don't know, just from what you said) it sounds like, obviously you're going through a very stressful time and you have done since Karen was 10, that's 26 years now. Which must be incredibly wearing on you as a family. And you want the best for her, you don't want her to be on her own. And the hospital presumably are just too stretched to offer you what you want. So what's the way forward, you think?

Gordon: Well, I accept the hospital is stretched. But at the end of the day, as I said, it's not a preference. Karen needs Heather there to provide physical and emotional support. Now it's not ideal for Heather either, we have to think of that, that she's just sort of sitting there on a chair by the side of her room, but she's prepared to do that 24/7 if it helps Karen.

Host: So does that mean, then, that you think implicit in this that the hospital and the hierarchies (you call it) don't consider ME a serious enough condition for that to be the case? For someone to be able to stay with her.

Gordon: Certainly, that's the impression that we're getting from the nursing hierarchy. We've had 23 other hospital admission with Karen and they're always managed to provide a hospital room. Not necessarily immediately, but at least acknowledge that they should be finding a hospital room. And they've always allowed Heather to stay with her, acknowledge the sort of needs that Karen has.

Host: So what's the difference now, then? On the 24th episode?

Gordon: Well, I honestly don't know. It seems to be something that's inherent with the gastro side of the hospital service. Most of Karen's other admissions have been to urology and we've never had this problem. And they've been really accommodating to Karen and made the stay as good as you can make a hospital stay. We're not asking for any more than that.

Host: I'm sure you've already heard this, well I'll read it out anyway. This comes from the NHS trust in question, which says that "patients with ME have a range of needs that often require complex multidisciplinary care. All treatment we provide to patients with ME is as closely in line with NICE guidance as possible. And ensuring that they have the best clinical care and experience, the best clinical outcomes remains the highest priority. We continue to work to provide care that will deliver the best outcome for our patients." What is the outcome currently?

Gordon: The outcome at the moment is very uncertain. I mean, Karen is in a dire and desperate situation and we're all very desperate. And we're very scared at the consequences and we're feeling extremely helpless to the point Karen now wants to discharge. And that discharge would mean no fluid, no feed at home, and you can only imagine where that would lead to.

Host: (quietly) Yeah.

Gordon: Karen has been denied suitable and appropriate healthcare quite simply. And we don't want to sort of challenge a hospital or come at loggerheads with a hospital; we just want to provide what is best for Karen, to make a really bad situation to a degree tolerable if that's the right sort of word. Because we've also been told (this is a quote from Karen actually) "They're making her life impossibly difficult in hosptial but they won't give her community care either." The community virtual ward service is saying they won't give IV fluid support on the community. So we can't be in hospital, we can't be at home. So we're just feeling totally helpless and isolated. And they are ignoring, despite what they say, they are ignoring the NICE guidelines, and they've also received advice from an expert specialist in severe ME and they're ignored that as well. And the expert said the same sorts of things. That they should be trying to provide a room and they should be allowing Heather to stay 24/7.

Host: Michael, I hear the frustration in your voice and I know you must be very tired as well. Because these things are very wearing. Let's see what happens. Please do keep in touch with us, and best wishes your family, and of course, to Karen. That is Karen Gordon's father, Michael Gordon.

 

Shrodinger's guidelines: the very law of the universe, they have to dutifully follow them for advising GET and CBT, and also just a mere suggestion if they don't feel like it.

It's often said that enforcement is 9/10 of the law. I have revised it myself lately going with 99%, and frankly even that is off the mark. It's 100%. Only enforcement matters. Rules, laws, instructions, guidelines, their substance doesn't matter at all, only what gets enforced does matter.

Anyone saying "those are the rules" isn't about following the rules or what they say, it's always about enforcing them. Or not.

 

Thread — Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

 

Polegate parents look to raise awareness of daughter’s ‘very severe’ condition

Polegate parents look to raise awareness of daughter’s ‘very severe’ condition (yahoo.com)

I don't know why they've put 'very severe' in inverted commas.

just maybe because "The NHS said common symptoms include feeling extremely tired all the time".

 

I think the general public don’t get the ‘severe’ or ‘very severe’ one might say as meaning what it does. I think because of its colloquial meaning they think it’s a non-specific adjective when mentioned - do many other illnesses use these words or is it things like ‘stage 1,2,3,4’ or more precise words that sound more officially medical. So there us just a chance it was good intention as they tried to work out the ‘style’ ( as in style guides would say eg if you capitalise each word of a phrase etc) that would convey the intended meaning best. Now pointed out this in itself is probably not an irrelevant issue re it contributing to broader misunderstanding and perceptions etc (particularly of what very severe ME is and his bad it can be etc and the needs etc)