Maeve Boothby O'Neill - articles about her life, death and inquest

Not sure if this has been shared but a good report of today’s proceedings in the Independent:

“Doctors held ‘outdated’ views about ME, inquest into sufferer’s death hears”:
https://www.independent.co.uk/news/uk/exeter-nhs-b2585294.html

Some excerpt from the above article:
Dr Weir told the hearing he had written to the chief executive of the hospital on September 9 expressing his concerns about her case and the “outdated” views some doctors held about ME.

“Consequently, patients with this condition have frequently been regarded as perversely inactive without any regard for the possibility that their inactivity is not due to deliberately perverse behaviour,” he wrote.


“This can lead to completely inappropriate management of someone genuinely severely affected by a condition with demonstrable organic pathology.

“A further point I wish to make is that it would appear a considerable proportion of the staff at the Royal Devon and Exeter Hospital, including some consultants, still hold an outdated understanding that ME/CFS has psychological causes.


“It is also apparent from the way Maeve was treated during her last admission that her illness was regarded by some of the hospital staff as her fault and her immobility was self-inflicted.
Click to expand...
“One of the curious historical facts of this illness, although I began to be interested in it in 1987, I never really began to see patients as sick as Maeve until about 10 or 15 years ago,” Dr Weir said.

“It is almost as if there is some form of evolution of this disease process which is making some people with the condition much more severe.
Click to expand...

Miss Boothby-O’Neill’s father, Sean O’Neill, a journalist at The Times, asked Dr Weir whether there was still resistance within the medical profession to ME being a physical illness.


“Until that dogma is properly buried and replaced by a proper scientific understanding of this condition within the medical profession as a whole, we are not going to progress very far with understanding it and being able to treat it properly,” he said.

“My only comment to that is there are none so blind as cannot see.

“There are still plenty of medical professionals out there in the community who are still inherent to the dogma and sadly has a very seriously damaging effect on understanding the true scientific nature of this condition.”
Click to expand...
 
Excellent article in the Telegraph:

https://www.telegraph.co.uk/news/20...-oneill-nhs-staff-treated-blame-condition-uk/
Three weeks before Ms Boothby O’Neill’s death, Dr Weir wrote an excoriating letter to the chief executive of North Devon Healthcare Trust claiming doctors had an “outdated understanding” of the debilitating condition and accused staff of treating her as if her illness was “self-inflicted” and she was to blame for her inability to function normally, the inquest heard.

But Dr Weir’s letter went unanswered, leading to fears by Ms Boothby O’Neill’s family that his warnings may have been ignored.
Click to expand...
Dr Weir, who had been approached by Dr David Strain, the RD&E’s own ME lead to help him fight for better treatment for Ms Boothby O’Neill, said in his letter that a “considerable portion” of the staff at the hospital, including some consultants, “still hold on to the now outdated understanding that ME has psychological causes”.
Click to expand...
In response to a question from her father Sean O’Neill, a journalist with The Times newspaper, Dr Weir told the hearing: “There’s a dogma that this condition is psychological and until that dogma is buried it will be very difficult to treat ME patients properly.

“There are still plenty of professionals out there who still adhere to this dogma and that inhibits a true understanding of this condition.”
Click to expand...
 
Last edited:
NelliePledge said:
Thanks for clarifying. I hope the cross examination of Dr Roy and others - those who took the decision to overrule the placement on neuro ward for example will test their evidence to the same degree.
Click to expand...
I suspect that those persons include the 2 nurses who are too ill to attend (reasons not given)
Edit- I think it was mentioned on the first day that there was some disconcertion that a Consultant’s recommendation (for the Neurology ward for Maeve) had been overruled by the site management team who are not consultants, but nurses.
 
Last edited:
Hi everyone! I emailed Betsy Ladyzhets from The Sick Times about Maeve’s inquest and they’re on the case already, which is good. She asked me if there were any articles I thought had done a particularly good job of covering the inquest and would recommend to other readers?

I’m not well enough to gather this together today but wanted to ask if anyone could help please? I thought any articles that link Maeve to the failures of care for other people currently in danger would be particularly useful.

Thank you so much!
 
RainbowCloud said:
Hi everyone! I emailed Betsy Ladyzhets from The Sick Times about Maeve’s inquest and they’re on the case already, which is good. She asked me if there were any articles I thought had done a particularly good job of covering the inquest and would recommend to other readers?

I’m not well enough to gather this together today but wanted to ask if anyone could help please? I thought any articles that link Maeve to the failures of care for other people currently in danger would be particularly useful.

Thank you so much!
Click to expand...
I’ll let others answer about the inquest itself, but an excellent article to understand the situation is this one, extremely worthwhile read. (its about the situation in general and published before the inquest started).
https://www.codastory.com/waronscie...ong-covid-unexplained-symptoms/?src=longreads
 
Yann04 said:
Isn’t TPN commonly used in cases of critical illness that don’t affect the gut? Or in some cases of severe burns?
Click to expand...

In most cases enteral feeding is probably possible but I agree that there are probably situations like multiple injuries or facial burns where it might be necessary. The guideline may relate to elective use of TPN in chronic disease in contexts that exclude these though.
 
Eleanor said:
I wonder if we'll see any pushback from the BPS guys (via the SMC?)
Click to expand...

The BPS view seems to be that ME doesn't exist and that CFS does not cause starving to death. That makes it difficult for them weigh in maybe. They would have to claim that the problem was another psychological illness. In which case the hospital would have been negligent not to section Maeve and get her fed.
 
Haveyoutriedyoga said:
I believe home care services can’t administer food, drink or medication
Click to expand...

They can and do. Few elderly people with dementia can manage their own meds, so the care team does it. Carers also used to do tube feeding for someone I knew who could no longer swallow. They weren't qualified nurses.

It has to be included in the written care guidelines and meds and feeding must be recorded every time, but once that's set up, it seems to be normal practice.
 
I think the approach would be via gut first and always, unless not possible. Ie bypass upper GI tract via gastrojejunostomy or direct jejunostomy, in eg facial/oral trauma.

Jonathan Edwards said:
One key point for me is the claim that RCP guidelines say that TPN should not be used where there is a functioning gut unless the patient is detained under the Mental Health Act (sectioned).
Click to expand...

That point stood out to me too. There is a lack of logical thinking as you go on to say. The other question I'd raise was this concern about risk of sepsis with TPN. We'll presumably hear more about this tomorrow with Dr Roy. Was the risk of sepsis considered greater in Maeve than any other patient receiving TPN, including a burns patient? If so why? Did they for example think she had an immunological pathology that put her at greater risk?
 
Arnie Pye said:
At a tangent from the inquest...

The hospital nursing and medical staff who think ME is "psychological" are, in effect, admitting that they think patients with mental health problems don't deserve care and if such patients die it is their own fault.
Click to expand...
Yes, the best cure for manifestations of mental health issues is to withold care until they just starts behaving themselves. In addition, do you know how difficult it is for the staff dealing with these patients… (sarcasm, in case anyone is wondering)

I hope George Monbiot is going to write about the inquest
 
Jonathan Edwards said:
In most cases enteral feeding is probably possible but I agree that there are probably situations like multiple injuries or facial burns where it might be necessary. The guideline may relate to elective use of TPN in chronic disease in contexts that exclude these though.
Click to expand...
I know from experience with a friend (outisde the UK) that TPN was used for their late stages of ALS, as there were problems with PEG.

Wouldn’t ALS count as a chronic disease. I feel like if these are truly the guidelines there would be a some preventable death from malnutrition in other chronic diseases that don’t directly affect the gut.
 
Yann04 said:
I know from experience with a friend (outisde the UK) that TPN was used for their late stages of ALS, as there were problems with PEG.

Wouldn’t ALS count as a chronic disease. I feel like if these are truly the guidelines there would be a some preventable death from malnutrition in other chronic diseases that don’t directly affect the gut.
Click to expand...
Yes! ALS is known as Motor Neurone Disease in the UK I think?
 
Yann04 said:
Wouldn’t ALS count as a chronic disease.
Click to expand...

Yes, I agree.

There seems to be a flawed logic involved and I suspect that the quoted guidance isn't intended tone interpreted in the way being implied. It makes no sense.

As SNTG points out, there is a difference between going for PEG etc or TPN IV. It is not clear from what we have heard so far to what extent either or both were considered at what stage.

The simple fact is they got it wrong. So rather than defend themselves it would be better if everyone tried to work out what is wrong with the guidance they claimed to be following.
 
You must log in or register to reply here.
Back
Top Bottom