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

I've been trying to find the source of this claim. There's an RCP publication called "Supporting people who have eating and drinking difficulties" and even in the "Nina" example "functional GI disorder" case (s6.5, p70 2021 edition), which is very different to that of a pwME, the mention of parenteral nutrition does not try to preclude it:

I wonder if the lawyer who mentioned RCP guidance was confused, although if memory serves Dr W seemed to know what he was referring to.

ETA: I also checked the previous publication, "Oral feeding difficulties and dilemmas", and I can't find anything in that would preclude parenteral nutrition in such a case either.

 

Interesting.

It was the reference to the use of the mental health act that seemed so odd.

 

Seems I'm not good at googling at the moment -- couldn't find according guidelines.

(Edit -- crossposted with @Nightsong who found and quoted some guidelines just two posts above but so could not find a source for the claim either)

Instead found "PINNT" a support group for people living with artificial nutrition.

https://pinnt.com/About-Us/All-About-PINNT.aspx

"PINNT offers a range of support and resources for members: A support & advocacy group for people on Home Artificial Nutrition (HAN)."


There's a person with ME/CFS on the Executive Committee. Not sure if they receive total parenteral nutrition or just partial but thought the may serve as anecdotal evidence that it's possible for at least some severely affected pwME to improve a bit (or at least prevent getting worse) with getting this kind of nutritional support at home.

https://pinnt.com/About-Us/Executives.aspx

Also maybe some useful stuff in the information they offer (first link).

Edit - clarity

 

Perhaps not so much if you are on an eating disorders ward ? There's a perception bias inbuilt.

 

Still trying to understand if there is such a thing as 'partial parenteral nutrition' (see post #264 ) and if there is, why would be managing that be much different to managing 'total parenteral nutrition'?

 

Indeed, but then the patient is refusing to be fed presumably. If they want to be fed there is no need to deprive them of liberty - you just offer the treatment. It is the illogicality of invoking a procedure to deprive choice when choice is not the problem that, as my old boss used to say 'even a policeman would understand'.

 

Thank you everyone for reporting from the inquest and discussing. I find it hard to cope (both emotionally and cognitively) with what's being said at the inquest and am mostly much too slow to follow and participate in the discussion.

So apologies for only popping in.

Thank you @Nightsong for this and all your reporting.

Do you have a link to the guidance/ quote? That would be helpful and much appreciated.

 

So...Dr Weir testified today, as you all know already. First, some of you might have seen my brief cameo on camera--and how I was severely admonished by the coroner. Willy came with Jenny Wilson, a patient who lives in a village near Exeter. During the brief morning break, Jenny asked me if I could get coffee for her and Willy. There's a cafe in the building next door, so of course I agreed. But the hearing had already re-started when i got back, so I tried to quietly walk down from the back, where the reporters sit, to the front, where Jenny and Willy were. When I put the two cups of coffee in front of Jenny, the coroner glared at me and said, "This is completely unacceptable."

I mumbled an apology and slunk back to my seat. I figured I was about to be tossed out and barred. Luckily, the moment passed. A bit later, one of the court admin people came up to me and said, nicely, only water is allwoed in the courtroom--no coffee, no food. I apologized again, and they said no problem--they were very nice about it. The two other reporters there--one from The Telegraph, one from The Times, laughed (in good humor) and said, "Hey, you can't bring your American informality into our courts!" or something along those lines. Later we joked about how tomorrow I was going to come in early and leave cups of coffee at everyone's place. In the end, no harm done.

Later I'll post the text of the two letters Willy wrote that were read out in court--one to Dr Prague, one of the consultants involved in Maeve's care, in the spring of 2021, and one to the hospital management a few months later, in September. Much of his testimony focused on his recommendations about tube-feeding, which were not followed, and his concerns about low blood volume, which were also ignored. He argued that they should have done major saline infusions, which he contended could have helped Maeve with her OI so she could have been propped up for at least the period of time needed to tube-feed three times a day. But Dr Prague said her blood pressure was normal, so did not think that she had a low-blood-volume problem--although Willy argued that blood pressure when someone is supine was not sufficient and they should have taken her blood pressure when upright and experiencing OI. He also said there were tests for measuring blood volume that he did not think were available at the hospital.

The lawyer for the NHS trust pointed out that Dr Strain had yielded to the opinions of the gastro and nutrition experts about whether tube-feeding was necessary, and wanted to know if Willy agreed they were the experts in that domain. Willy repeated more than once that their opinion was based on not understanding the complexities of ME/CFS. For example, the feeding experts decided that Maeve was able to swallow. However, per Willy, the issue is not whether swallowing once is physically possible but that chewing and swallowing a meal expended so much energy that people in Maeve's deteriorated state could not tolerate it.

There was a lot more--in the afternoon, two social workers testified about their efforts to assess Maeve's situation in 2021 for social services purposes, including for a safeguarding investigation. There was a lot of discussion of the legal ins and outs of the requirements for these assessments, which was rather challenging to follow without being fully aware of the processes involved.

Tomorrow, we'll learn more about the differences over the tube-feeding issues with the testimony of Dr Roy, one of the hospital consultants involved in those discussions.

 

Here's the citation. Not sure if this is the guidance mentioned but it's the closest thing I've found so far:
Royal College of Physicians. Supporting people who have eating and drinking difficulties. A guide to practical care and clinical assistance, particularly towards the end of life. Report of a working party. London: RCP, 2021.

I think this link should work:

https://shop.rcp.ac.uk/products/sup...-drinking-difficulties?variant=39271813972046

 

Someone on there is arguing that it must be functional because no organic disease comes and goes like that...

 

That Reddit thread is toxic nonsense

 

@dave30th i enjoyed seeing you on camera today but sorry you had to endure the harsh admonishment.

As you are at the court in person are you given access to information such as the timetable for the enquiry? I had asked if this could be provided but they won’t send it out.

 

That would appear to be likely to be the most detailed RCP advice on the matter. It mentions the Mental Health Act a large number o times but going through it is always in relation to refusal to accept feeding. In the case of 'Nina' it is raised in that context. I get the impression that somewhere along the line of communication a bogus reading of the document has been fed to a legal representative.

 

Apologies for my lack of knowledge but is this one of those crazy catch 22 situations -

• tube feeding wasn't give because you need to be relatively upright (correct?); and
• Total parenteral nutrition (TPN) wasn't given because the RCP guidelines say it's not appropriate since you-

(a) have a functioning gut; &/or
(b) have a functioning gut but haven't been sectioned.


As per comments above, surely the discussion should be how the system failed a 27 year old woman who wished to live?
Either the-

• RCP guidelines need to be revised to reflect an unforeseen case (this one); or
• NICE have to step in & effectively do the same i.e. produce guidance; or
• you can have TPN without being sectioned i.e. in these circumstances; or
• the threshold for sectioning needs to change.

I assume gut (tube feeding) while lying flat isn't an option - slightly surprising if the alterative is death?

 

Yes although weirdly the tube or TPN (in your vein?) feeding is fairly routinely given to people who can’t sit but do have a functioning gut.

 

Indeed. Perhaps they should all head over to this one
https://www.reddit.com/r/doctorsUK/s/sKqW40DcDo
And take a good look in the mirror!

 

No. Each day at the end, the coroner says who is coming the next day. And it seems to be changing a bit. Tomorrow we'll also hear from Dr Warren, who I think is an endocrinologist consultant.

 

well, it was fine in the end. Of course I had no idea coffee was forbidden in English courtrooms. Only water is allowed. I assume that includes sparkling water!!

 

I’m reminded of Otto in a Fish Called Wanda.

 

Hospital doctors worry about it because aspiration pneumonia's a risk in very unwell people. It's not always connected to feeding, but the fact that it's an ever-present concern in immobilised patients might explain the caution.

I understand that bit, but what seems to be entirely missing from the thought process is the bit about death being an inevitable outcome rather than a theoretical risk if feeding isn't instituted.