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

In these modern times, you shouldn’t have to consider sending a patient with VS ME over 200 miles to Leeds for a bed. You should be able to have a bed at the nearest hospital which is suitable, with appropriately trained staff and protocols. The leading consultant can be based anywhere, or be peripatetic. We’ve got the internet, the NHS app, virtual appointments.
 
I thought I had previously read the Leeds inpatient service had shut, however it seems that it is still there (see https://www.leedsandyorkpft.nhs.uk/...npatient-centre-psychological-medicine-nicpm/ ) though the webpage has not been updated since 28/12/22.

It’s title ‘the National Inpatient Centre for Psychological Medicine’ does not inspire confidence

The National Inpatient Centre for Psychological Medicine delivers biopsychosocial holistic care for people with complex medically unexplained symptoms and physical / psychological comorbidities.
The NICPM is an eight bed specialist inpatient unit based at Leeds General Infirmary. It is a unique service which has a history over many years of delivering services within Leeds and West Yorkshire, and since 2009 has been successfully treating patients from across the UK.

Our team specialise in helping people with the following types of problems:

  • Severe and complex medically unexplained symptoms and illness
  • Psychological difficulties affecting the management of long-term physical health conditions (physical / psychological comorbidities) at a serious level of severity
  • Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) – we provide the inpatient care for the Leeds and West Yorkshire ME/CFS service
Approximately half of our beds are commissioned for Leeds residents and half for people from across the UK. For Leeds residents we also provide a service for people with mixed physical and psychological difficulties which may be complicated but at a more moderate or lower level of severity.
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However even if they were able to manage severe feeding issues Leeds would not be a practical destination for someone with very severe ME from Devon.

Added - Their Service Information leaflet does not inspire confidence given one of the highlighted treatments is “graded activity programmes particularly in relation to fatigue” see https://www.leedsandyorkpft.nhs.uk/...Service-Information-Leaflet-December-2017.pdf . Should we have a specific thread on this Service?
 
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Peter Trewhitt said:
I thought I had previously read the Leeds inpatient service had shut, however it seems that it is still there (see https://www.leedsandyorkpft.nhs.uk/...npatient-centre-psychological-medicine-nicpm/ ) though the webpage has not been updated since 28/12/22.

It’s title ‘the National Inpatient Centre for Psychological Medicine’ does not inspire confidence



However even if they were able to manage severe feeding issues Leeds would not be a practical destination for someone with very severe ME from Devon.
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It’s closed to new referrals from outside Leeds since 2022 click the link on that page “for referring clinicians”
presumably it was closed earlier as Dr B? Contacted them and they said they’re not accepting patients. The classic phrase ”we’re not commissioned”
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I was talking to my mother about the case, and she said they never had a problem feeding someone lying down when she worked as a nurse, it happened often enough that it was easier/better to do so so they did. I have to look up if this correlates with some change in clinical practice since she worked at a ward (perhaps due to research on stroke patients as has already been mentioned?)

One reason we put babies on their backs is so that they don’t suffocate should they gulp or cough up their stomach contents, with the same reasoning as @Jonathan Edwards described about physiology that the stomach content then dribbles out the mouth instead of down into the lungs.
 
MrMagoo said:
You should be able to have a bed at the nearest hospital which is suitable, with appropriately trained staff and protocols. The leading consultant can be based anywhere, or be peripatetic.
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Sadly I do not think this is realistic. I am beginning to understand that looking after VS ME/CFS requires a very high level of skill even to do less harm than good. You need staff of high intelligence who have a lot of experience. I suspect that the numbers of people with this problem is tiny in terms of service requirement - maybe ten people in the UK at any one time.

When I was using rituximab for RA we were the only unit in the UK likely to do more good than harm because that also required a very high level of understanding and skill (of a very different sort). The French lost a number of patients because rituximab was rolled out to all hospitals and people did not understand how to use it.

For children there are probably three or four centres at most for severe ME/CFS in England. Probably none of them are ideal but they do understand the complexities and that it takes a lot of experience to learn what needs to be done just to avoid screwing up completely.
 
Very distressing at the Inquest now. Mrs Boothby very upset. Trying to question witness on why she wasn't helped when she asked for help from the District Nurse. Ms Jenkins.

'Why is the risk of not being able to receive hydration at home never recorded by the district nurse?'

'The Community Dietitian would have this'. 'Outside of their scope of practise'
 
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Jonathan Edwards said:
I am beginning to understand that looking after VS ME/CFS requires a very high level of skill even to do less harm than good.
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And resources. I'm struggling to get past that phrase "nursing burden" in relation to TPN. Nobody would use it about an ICU patient; it's just accepted that staff-to-patient ratios are high because they need to be.

But people like Maeve are as much at risk as ICU patients. They might need a different environment, but if pump feeding has to trialled because bolus isn't tolerable, that's what should happen. If it means continuous observation is necessary, it should be put in place.

If she'd broken her neck trying a bit of cliff diving when she was off her trolley on cider, would anybody be talking about "burden"?
 
Kitty said:
And resources. I'm struggling to get past that phrase "nursing burden" in relation to TPN. Nobody would use it about an ICU patient; it's just accepted that staff-to-patient ratios are high because they need to be.

But people like Maeve are as much at risk as ICU patients. They might need a different environment, but if pump feeding has to trialled because bolus isn't tolerable, that's what should happen. If it means continuous observation is necessary, it should be put in place.

If she'd broken her neck trying a bit of cliff diving when she was off her trolley on cider, would anybody be talking about "burden"?
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If it was cider yes the Daily Mail certainly would.

If on the other side, it was a splash of vintage Champers or a decent red on the edge, or a mishap with a thoroughbred, or a collision involving an oval ball and a few large men, or something that happens on a army base, no probably not.
 
Hi,
I'm severe (top end) so not following this blow by blow but have read the mainstream media coverage (including the two BPS articles ironically in the left wing media )

I wanted to ask whether you think the coroner is reading between the lines and "getting it", particularly the systemic impact of the psychologisation on delaying the appropriate treatment until too late, or does it seem as if they are swallowing the hospitals story that no one messed up?

I worry the PFD outcome will be nothing more than an soecific advisory to that one hospital to sharpen it's act up, which it says it has already done.
 
I’ve had a look at tweets but won’t be up to doing anything until this evening.
Dr Shenton answers seem a mixed bag…
The district nurse was giving evidence and it seems she called in to check for pressure sores one day, but this evidence involves a lot of Sarah asking (reading into evidence) absolutely desperate phone calls to DCC, Gp, asking for help, asking for bedpans, help with fluid intake and the replies are mainly “that’s not us that’s Dietician/Social Services/need a care assessment “computer says no”

coroner says she has a clear idea of what happened to Maeve.
Interim decision 2pm next Friday, public welcome to attend

Jonathan Helmsley to appear in September for one day.

I think full decision is due late Sept
 
Kiristar said:
Hi,
I'm severe (top end) so not following this blow by blow but have read the mainstream media coverage (including the two BPS articles ironically in the left wing media )

I wanted to ask whether you think the coroner is reading between the lines and "getting it", particularly the systemic impact of the psychologisation on delaying the appropriate treatment until too late, or does it seem as if they are swallowing the hospitals story that no one messed up?

I worry the PFD outcome will be nothing more than an soecific advisory to that one hospital to sharpen it's act up, which it says it has already done.
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This coroner, like the majority of them, is a barrister. She’s already mentioned something about the legal arguments for Negelct being a test in the legal sense, not the everyday use of the word. So she’s going to look at things form a legalistic viewpoint which makes it hard for us to guess as non-lawyers.

I do think she “gets it” that the situation was catastrophic but I don’t know how much a “take down” of the BPS fits with what she is there to do. I think a public inquiry would be better placed to do that.
 
MrMagoo said:
Interim decision 2pm next Friday, public welcome to attend
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This might be detailed and impactful.

Maybe we should also prepare ourselves for it being brief, dry, or appearing to communicate too little of the tragedy. It wouldn't necessarily mean that it lacks force, or that what happened to Maeve hasn't been understood, or that there will be no consequences.
 
MrMagoo said:
This coroner, like the majority of them, is a barrister. She’s already mentioned something about the legal arguments for Negelct being a test in the legal sense, not the everyday use of the word. So she’s going to look at things form a legalistic viewpoint which makes it hard for us to guess as non-lawyers.

I do think she “gets it” that the situation was catastrophic but I don’t know how much a “take down” of the BPS fits with what she is there to do. I think a public inquiry would be better placed to do that.
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Yes, I wouldn't disagree. I meant my question in the context of wondering whether she is likely to somehow just think this an innocent isolated tragedy or if she is more likely to issue a Prevention of Future Deaths order, and if so whether that would be targeted high enough to do anything
 
Midnattsol said:
I was talking to my mother about the case, and she said they never had a problem feeding someone lying down when she worked as a nurse, it happened often enough that it was easier/better to do so so they did. I have to look up if this correlates with some change in clinical practice since she worked at a ward (perhaps due to research on stroke patients as has already been mentioned?)

One reason we put babies on their backs is so that they don’t suffocate should they gulp or cough up their stomach contents, with the same reasoning as @Jonathan Edwards described about physiology that the stomach content then dribbles out the mouth instead of down into the lungs.
Click to expand...
When my daughter (35) was born I was told she had to be on her stomach so she wouldn’t asperate her own spit up. Clearly this was a presumption because my son was born after the change was to put infants on their backs to prevent SIDS. Lots of advice and practice that isn’t based on actual research.
 
Kiristar said:
Yes, I wouldn't disagree. I meant my question in the context of wondering whether she is likely to somehow just think this an innocent isolated tragedy or if she is more likely to issue a Prevention of Future Deaths order, and if so whether that would be targeted high enough to do anything
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I don’t think she can see it as an isolated tragedy as it’s clear the NHS has no services anywhere for SVS ME, and medics, GPs haven’t been trained.
 
MeSci said:
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
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I'm a bit confused as to what the... hospital?... I'm not sure who is the investigated party here, is arguing about how the death was not preventable. All their contemporaneous notes reflect their certainty that there was nothing physically wrong with her and there was ample testimony that she did not have an eating disorder, had mental capacity and that her gut was functioning.

What else is there even to contribute to her death, then? The only excuse that may make some bit of sense of all this evidence would be arguing that she basically slowly suicided out of conviction of being ill, even though in their expert opinion she was not actually ill. Which is a despicable excuse to put forward but I can definitely see them argue it.

ME was not the main factor in her death. They were. Their inaction, their refusal to acknowledge the nature of her condition and how it was responsible for her decline. So if they argue that her death was inevitable, but cannot reasonably do a "suicide by belief", then that would mean that left untreated, severe ME can kill in an unpreventable way. Which they obviously don't recognize. They painted themselves in several corners here, probably confident that the system will protect them no matter what, as it's even more guilty than they are.

It's a tough job for the coroner. The NHS caused her death by intransigence over a purely hypothetical model of illness, one espoused all throughout its various institutions and supported at the highest level despite being a miserable failure. Will she have the courage to do the right thing here? So far this system has shown a complete inability to do the right thing, that following orders leading to bad outcomes is always preferable to doing the right thing when it's not authorized bureaucratically.

The complete lack of contrition or responsibility here 100% says that this is standard operating procedure, that it will happen again, by choice. None of the people responsible have, by their own admission, even read a single thing about ME since. Anything below negligent manslaughter would be injustice, but if there's one thing that does hold up perfectly when it comes to us: justice is always denied.
 
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