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”
 
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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”
 
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A PEG can be adviseable if nutrition support are assumed to last longer than 4-6 weeks, that's really all that is needed to use a PEG over a nasogastric tube.

When it comes to total parenteral nutrition, I'm not sure I know of any example where it would be used and it wasn't for the intestines being non-functional. Parenteral nutrition in combination with some sort of enteral feed, yes, but not total parenteral nutrition.

But with that said, I do not have extensive knowledge on treating patients with parenteral nutrition needs.
 
MrMagoo said:
I’ve seen tweets that the Coroner has said the Press are present, and of course the snapshots of today seem heartbreaking, so expect some articles later
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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.
 
MrMagoo said:
Coroner warns that there won’t be a decision soon, not in August, maybe in September
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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.
 
Midnattsol said:
When it comes to total parenteral nutrition, I'm not sure I know of any example where it would be used and it wasn't for the intestines being non-functional.
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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.
 
@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?

.
 
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hibiscuswahine said:
Yes, I do think she wanted to give anything a go. She knew she didn't have the physical capacity to do so, at times. (And we all understand this due to our experiences with ME). The Physicians who specialised in ME, Dr Weir and Dr Strain, explained it to her treating consultants on multiple occasions. I do think she become more and more physically unwell (and the lack of nutrition would have contributed to this!) and I have read she had mentioned hospice care at one point but they wouldn't take someone with a NG tube (goodness knows why not). I think, but I don't know, that she saw the impossibility of it all and had no choices left and also perhaps to relieve some of the burden on her mother/family. Impossible situation for her, her parents and her GP. Hospice care is for end of life care. Yes, they have good palliative care doctors and nurses but they are used when all medical options for a terminal illness have been tried. I don't believe she had a terminal illness. If she had received adequate nutrition in a timely manner, she would still be alive.

If the coroner thinks there is grounds for medical misadventure or failure in duty of care etc she may proceed to take the matter further. In my country, if she had evidence there are concerns about a doctor's practice or behaviour, she would pass her complaint to the Medical Council. (GMC in UK) and they will decide what disciplinary process will occur. Medicolegally, the gastroenterologist is not an expert specialist in ME, and he openly said he had no experience in ME. There is no evidence given during this coroner's enquiry, that I have read, that he took the time to examine the clinical practice literature for the medical treatment of ME. He did not take the disability of her ME into account when advising the admitting/treating physician on a course of treatment (which was basically non-treatment). He believed her medical illness was psychosomatic or due to psychological factors and I haven't read if he got a psychiatric opinion on that, which would be the necessary to support or refute his opinion. CL Psychiatry was involved, but all that I know from here, is that their involvement was solely to test her mental capacity to consent and make decisions on her medical treament. In a medicolegal setting - they will ask him why he didn't, so saying vague things like ME is a contestable illness or psychosomatic would be a weak defence when you have Physicians with many years of treating pwME (and who had been treating her within their professional scope of Medicine), with established medical treatment used worldwide. And if there was a psychiatric opinion that she had no psychiatric disorder, he would be on rocky ground. These cases can cause change in the medical community (sometimes worldwide, eg. in Commonwealth countries) as other physicians are challenged in their view and if they know they could be held accountable for outdated views on an illness, will be forced to upskill themselves. Ignorance is not much of a defence, the onus is on the doctor.

I do wonder if the "CFS" ward the community dietician referred to in his testimony may have been a useful place to regain her weight. It was at the Bristol Infirmary. From what I have read on the forum perhaps it would not be a good place... but perhaps a properly funded long term bed (6 months) rather than being admitted to an acute medical ward (time after time with different medical consultants), may have been a reasonable option. Some of the commentators on here may have more of an idea if the ME/CFS specialists there are good ones (and not the CBT/GET kind). But then why did Dr Strain/Weir not suggest that, or maybe they did and was not listened to. A lot of information is unclear but I am very grateful to the people who have shared their time and energy to listen to the court live, summarise and post. I know it is not easy to do, but important to do.
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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.
 
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bobbler said:
the locked-in term is interesting, was this @MrMagoo used by Sarah to describe Maeve fearing not having a chance to go through a plan of various contingencies in case she wasn't able to communicate in future ?
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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
 
bobbler said:
Could I get yours and anyone else who might have some perspective on it about the comment earlier on said by a witness that was something along the lines of 'it was unusual she had mental capacity because brain fog normally means many/most with severe ME don't' ?

I find this comment incredibly worrying for a number of reasons, and then I add in the catalogue of things that happened like her being put on an eating disorders ward, the gut-brain and functional blather and people talking about avoiding 'medicalising'.

But to go back to this specific issue: I thought that the mental health act was in place for those who did not have capacity to understand and make decisions. It is not intended to be a test at a point in time dictated by someone else where said person might have had light, noise and over-exertion and they get asked questions and tested on how well they seem to speak. Under that situation you'd have anyone with a terrible flu who got woken up in the middle of a deep sleep staring at bright lights being drawn under it.

Saying 'I can't think right now but could you come back after I've slept or leave some notes for me to look over' should certainly be counting as sensible adjustments and not at all as any indication of capacity.

Even though I've been worried about what has been moved under the term mental health when it for example is neuro and cognitive eg slowness but not distorted thinking it should not have allowed all norms not to be well aware of not being inaccurate and discriminatory based on not being able to differentiate and understand these differences - just thinking someone seems to speak slowly always used to be well-known as having nothing necessarily to do with them being allowed to make their own decisions etc.

In fact it isn't supposed to be catching out people whose speech is affected for example after stroke but are able to make their own decisions, or even those who have an illness that is a form of 'locked in'.

I thought it was very specifically something that was to only cover people who were unable to understand in a sensible timeframe the risks and benefits of decisions, or whose behaviour might be very risky to others.

How could it happen that just ill people could get drawn under something without a heck of a lot more political and legal debate being required because this just widens the scope hugely beyond what it was ever precisely intended for, dragging in by definition potentially all range of conditions and people who I don't think it was put together for unless it is only being used on people over whom there is also already a stigma (and still then it is supposed to have nothing to do with that)?

And just like putting someone under arrest or work performance etc continually would be stressful, it shouldn't be something that so many players are allowed to be so muddied about that it is happenning left, right and centre to those who shouldn't be covered by it with observation most normal healthy people wouldn't allow because it's a 'someone sneezed wrong/worded something in a way that was misunderstood' situation by the looks with the notes that are going on by people who should have been focused on compassionate care (which involves empahty ie the opposite of this attitude) actively it seems looking for things to catch them out on like FII.

Am I the only one who is finding it disturbing that noone has pathed out and blue-printed the effectively hostile and risky environment these I don't know what they are if they aren't stigma (probably called good intentions or 'I didn't know') that someone in this situation is having thrown at them ? It certainly sounds like the insinuations from those who wrote the old guidelines and pushed certain materials, and basic bigotry some individuals just bring from themselves, was weaponising every element and power of the mental health label, whilst desperately looking for justification of it, over or maybe at the same time as treating the problem in hand, but thereby causing all sorts of extra problems.

Does anywhere anything look at the cumulative harm all of this does, and what the receiving end experiences/how it affects their care and health?
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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.
 
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Lou B Lou said:
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.
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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.
 
Kitty said:
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.
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I might be biased, but I feel malnourishment is a medical issue. And if someone is not getting nutrition - they will die, so if enteral is not possible then parenteral is the only next step. I can't remember that non-functioning gut is a requirement for TPN, because again if all other avenues have been found to not work there really is no alternative. However I don't remember any case study where TPN was used unless there was a non-functioning gut so it's this out-of-the-box thinking required.
 
Jonathan Edwards said:
Why has nobody done the necessary studies?
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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.
 
Jonathan Edwards said:
The fact that Maeve could do things some times and not others to me is readily explained by this sort of intolerability
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Jonathan Edwards said:
My conclusion has been that if you just accept that people with ME/CFS actually feel ill in the way that everyone feels very ill in one way or another at times then the variation is actually entirely as expected.
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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.
 
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