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

It's interesting to see journalists being unafraid to present the psychological view of ME as a causal factor in the failings of care.

I wonder if we'll see any pushback from the BPS guys (via the SMC?)

 

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“Doctors held ‘outdated’ views about ME, inquest into sufferer’s death hears”: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:

 

Do we think any of the BPS people will be called as witnesses?

 

Isn’t TPN commonly used in cases of critical illness that don’t affect the gut? Or in some cases of severe burns?

 

Excellent article in the Telegraph:

https://www.telegraph.co.uk/news/20...-oneill-nhs-staff-treated-blame-condition-uk/

 

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.

 

That’s something I haven’t heard before

 

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!

 

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

 

I doubt it, they don't like being questioned, they would probably accuse the questioners of being dangerous militants!

 

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.

 

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.

 

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.

 

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.

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?

 

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

 

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.

 

Yes! ALS is known as Motor Neurone Disease in the UK I think?

 

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.

 

If anybody can stomach it, UK GPs discussed the inquest on Reddit here,

Code:

https://www.reddit.com/r/doctorsUK/comments/1e9qrzh/sad_case_of_patient_and_gp_seem_to_be_let_down/