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

Not necessarily in good order. Bold is my emphasis. Sarah and the Coroner.


coroner asked Sarah what her expectation of the March admission was.

Sarah describes the difficulties sitting up and chewing. Maeve was mostly bedbound. It was difficult to get enough food into her. The loss of chew created a workload for Sarah “how do I do this”?

Sarah says they were happy to be discharged with speed they had the right nutritional supplement to go home… They couldn’t get it from community dietician but got it from the hospital. She trusted the dietician on the ward and that the supplements were enough.

The coroner asks if Sarah thinks Maeve should’ve stayed in a bit longer?
Sarah said Maeve would get worse after every admission. The care on the ward could not be better, but what couldn’t happen in the hospital was management of her symptoms.She did improve when she got home.

Sarah said her expectation was that there would be a full social care assessment at home, but there wasn’t

Sarah said at home didn’t need to block out noise and light

Sarah said there is no respite care for people with very severe ME

Sarah said Maeve wanted me to stay in the hospital because I could speak for her

Sarah said the win on the ward was that there were people around day and night, but because she was so disabled, she couldn’t ring the bell

Sarah said my regret now is that we did not try to resolve the feeding prescription at home

Sarah describes a opportunity where healthcare professionals could’ve recognised that Maeve could have benefited from tube feeding

Sarah said perhaps the dietician didn’t believe that Maeve didn’t take anything at all only the prescribed nutrition

Sarah said going through triage that put Maeve back so much

Sarah describes the things that could’ve happened to allow M to stay at home if there have been some evaluation or risk assessment at that stage they’re probably would’ve been a very different outcome

There’s discussion of MDT meetings and team to get Maeve into hospital. Sarah thinks that the knowledge of what ME is was too weak in that team of people.

Sarah said“had they involved ME specialists They might have increased the knowledge base” she explains how she search for expertise to educate the MDT

Coroner ask if one of the manifestations of ME was that Maeve could do something one minute and not the next.

Sarah discusses how unpredictable ME is how you can’t plan for anything “if you do anything whilst symptomatic that is guaranteed to make you worse“ Sarah mentions the relapsing and remitting nature of ME“the only people who really know other people who live with it.“ reference that it “changes like the weather”

 

Maeve - I’m not doing Graded Exercise, which is what testing sitting up is

 

Some media coverage of today's testimony - BBC:

https://www.bbc.com/news/articles/cger8kdgdldo

and ITV News:

https://www.itv.com/news/westcountr...death-could-too-easily-happen-to-someone-else

 

Last part of Sarah’s evidence in no particular order, thanks to ME Advocates Ireland for the tweets and Paul R Keeble. Bold emphasis is mine.

Final admission being discussed

Sarah much more planning was needed before that admission. Maeve was in a starvation state and without understanding about… The hospital didn’t act quickly enough.

Coroner focuses on NG feeding the NG tube was a failure. What do you want to say about that?

Sarah explains about the difficulties regarding feeding in severe ME no matter what the solutions would be, if we have been invited to comment we would have said that’s not going to work”Sarah thinks pump feeding would’ve helped. The trust rep interrupts not happy about “lay witness” evidence. Objecting to Sarah saying whether bolus or pump is better.

Coroner is rebutting on concern Sarah had about the method whether Sarah agreed.

Coroner ask about when NG feeding stoped why Maeve couldn’t tolerate NG?

Sarah said she could take orally half of what the tube contained it’s made of plastic, so slow, viscous feed; all activity around bedside to support her was exacerbating her symptoms more and more

“She wasn’t asleep but she couldn’t speak. She was much worse with the tube down [her throat] “

“She wasn’t involved in the decision making about the NG“

Corona asked what the position regarding nutrition was when they went home after the last admission

Sarah states that the NG was less demanding to Maeve than the constipation. Severe constipation had not been treated though Sarah had asked for it. Maeve had already pushed through to prove to the dietician that she was following the plan and could perhaps achieve six bottles a day “she was afraid she would die in hospital”

 

Well, the press included me as well as Fiona Hamilton from The Times--so she's definitely getting something up today. I'll post Sarah's and Sean's statements later. The Telegraph guy wasn't there today--he got called to cover something else, I think. There were also two BBC reporters there but I think for a longer story, not for today. I assume other reporters were online.

 

there will be a fact-finding decision next Friday. The other part related to a Regulation 28 protective order or report is what would come out later. They need to schedule a time for Hemsley to appear.

Regarding transcripts--they will only be available to the parties involved. Not available to press or the public. Unfortunately.

 

It might not be arguable from a medical standpoint, but by the time Maeve was nearing the end of her life, she could almost be compared with someone in a coma. They might have a theoretically functioning gut too, but if despite that they required TPN because they couldn't take enteral feed, would the conversations about the risks of acting versus not acting be the same? The calculations about the amount of staff time it would take up?

I understand it's complicated, because it was better for Maeve to be treated at home and a comatose patient would be in hospital; but in terms of her immediate survival, of at least being given a chance to improve on more complete nutrition, it still seems as if she was treated differently to someone with high care dependency for other reasons.

 

Guardian article for today

https://www.theguardian.com/society...t-before-she-died-mother-tells-exeter-inquest

 

@Jonathan Edwards wrote:

"But it is not clear that Dr Weir's advice was well founded. The evidence for low blood volume is uncertain. There is no reliable evidence for benefit from IV saline, which, in general terms, has no effect on blood volume over more than an hour or so."

That may well be the case. Nevertheless, it appears from Dr Weir's long clinical experience that IV saline plus the medication (sorry I can't remember the name of it) can enable severe ME sufferers to sit up at a higher angle for enough time to be fed by the various feeding methods that require a certain angle of elevation.

In the absence of very detailed guidance for feeding Severe/Very Severe ME patients who are at risk of malnutrition or starving, that advice from Dr Weir's clinical experience is surely worth a try?

IV saline could surely not be so damaging for severe ME sufferers that there could be any argument for not using it?

.

 

Just to say, there isn’t a CFS ward. There used to be one a long time ago, which is what he was referring to. He was basically saying we need that type of ward.

The UK does not have any ME/CFS wards or beds, anywhere, at all. Any NHS ME/CFS clinic is an outpatient clinic, and most don’t treat severe/very severe ME, only mild and moderate.

 

I’m only repeating what tweeters have said, which means context gets lost, and specific wording is a bit unreliable, so don’t put too much stock to it, on my posts at least!

I think it could have meant “locked in to the NG tube” physically (it’s down your throat) equally it could mean “locked-in” treatment wise, we know Maeve was asking about contingency plans if NG failed. I think “locked-in syndrome” is possible too.

 

Sorry if this has already been posted but I can't keep up with the thread.

https://www.bbc.co.uk/news/articles/cger8kdgdldo

Daughter's death 'wholly preventable', says mother

A mother whose daughter had myalgic encephalomyelitis (ME) said her death was "wholly preventable" and her local hospital failed in its duty of care.

Maeve Boothby-O'Neill, 27, had the condition since she was 13 and was being treated at the Royal Devon and Exeter Hospital before she died at home in Exeter on 3 October 2021.

Her mother, Sarah Boothby-O'Neill, told the inquest in the city: "I believe the evidence shows Maeve is likely to have died from malnutrition and dehydration because she had severe ME.

"I therefore believe her death was both premature and wholly preventable."

More at link

 

I'll get back to you at the weekend. DM me if I forgot

 

Now I have seen Dr W's letter not only was the advice not well founded but I am sorry to say it does not make much sense either. He suggested measuring her blood volume which wouldn't have been easy - radioisotope dilution could have be used but that would have exposed her to unnecessary ionising radiation without any indication for it. His comments about "low circulating cortisols" don't make much sense either - if they suspected hypocortisolaemia they would do a random or preferably 9AM cortisol and if there were a suggestion of adrenal or pituitary dysfunction that would probably be augmented by the Synacthen (synthetic ACTH) test. The anaerobic threshold stuff seems to originate from the Workwell (?) papers but does not support the treatment strategy he advocates. There was IMHO a very strong rationale for providing enteral nutrition via NG/J or PEG/PEJ but that rationale has nothing to do with hypovolaemia or "mast cell related damage to the lining of her gut".

The letter was probably ignored at best and counterproductive at worst.

 

But is it in fact Dr Weir's experience? I am not aware that Dr Weir has given patients IV saline. Maybe he has, but as far as I know without making any carefully controlled observations. I am afraid I don't think we can treat Dr Weir's 'clinical experience' any differently from the president of the royal college who said that we know CBT works because he has seen it.

IV saline might be worth a try but it would not be my first thought for trying to get things right and it isn't without risk. IV saline can put people into heart failure. Normal healthy people can easily cope but someone who is seriously malnourished may not.

There are, for me, much bigger questions about how we got to a position where all the recommendations for people with ME/CFS are based on hearsay rather than proper evidence. Nobody comes out of this very well. Why has nobody done the necessary studies?

I also worry about the way all the speculated physiology about blood volume and cortisol provides a distraction that is very likely to simply reinforce the view of other doctors that there is no physical basis. To be honest, if I had received Dr Weir's letters about these things I would have reasoned that in the absence of any more reliable evidence they should be ignored.

 

Perhaps one of the results of Maeve's inquest will be that someone feels strongly enough that they should start looking at what to do in cases like hers. Presumably a case study would be enough to make a start, since most centres are unlikely to have more than one patient at a time? Or a joint case study between two centres?

Anyway, maybe it needs to begin with primary care practices like risk assessing any severely ill person who's losing weight. The disease course isn't predictable in the same way as degenerative conditions, where an eventual need for tube feeding is inevitable, but it's predictable enough if someone can't maintain their weight. I don't know whether it's possible to make recommendations like that in your paper, @Jonathan Edwards? It's another thing that shouldn't need saying, really, but it looks as if it does.

 

Yep. Just like the fellas on the building site down the road can be hungry enough to mug somebody for a bacon butty one day, but you couldn't pay them to eat it the morning after a stag do.