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

[Valerie Eliot Smith]

But is the person questioning Dr W a lawyer?

It appears to me (as a lawyer myself) that the Health Trust (RD&E), the local authority (DCC) and the GP surgery are all legally represented.

It is the duty of every lawyer to represent the interests of their client. This involves cross-examination of witnesses to test the evidence.

It's professional, not personal, however unpleasant it may sound.

I've seen nothing untoward so far - but, inevitably, watching this is deeply upsetting on a personal level for most members of the ME community (including me).

 

[MrMagoo]

Very bad framing, especially so soon after this issue was highlighted during the pandemic: it's not the beds, it's the staff and equipment. You can have as many beds as you want, they need competent staff with adequate resources. Just as guidelines are irrelevant if they're deliberately ignored and so are laws when they are not enforced.

Beds are entirely irrelevant here, there is zero adequate competent care across the board for any level of severity and hospitals are actually used to dealing with stuff like this. The problem is all the way to palliative care, but this is the tip of the iceberg. The staff involved had everything in their hands to do better and not let her die. They made decisions that essentially amount to choosing to letting her die. Not because of any scarcity of equipment, and not even because of a crisis of emergency care in a time of pandemic, as the same issue happened before and is still happening right now. As things stand, the clear message from those responsible is that they will do it again, and that their employer expects it.

There is a lot of waffling about who was in charge and it's very obvious to me that it was all a choice to escape responsibility: if no one is in charge, then no one is responsible. Which is BS, it actually means that everyone is responsible, because this is a long-standing issue that has been resolved a long time ago with the principle of an attending physician. Situations like this are never acceptable, where they sometimes deferred to Strain even though he had little insight and no decision-making power. This is the worst possible situation.

The same thing is happening as we speak, very likely to far more patients than we know of, including in the NHS. And there they also choose to make the same choices, the same lack of responsibility and feigned confusion as to whether they should let someone starve to death because they don't have specific guidance in this specific context.

I am a little bit reassured that, around the internet, non-ME ppl are pointing out disorders and diseases where feeding is given by NG/PEG and saying “but we do it for X, why wouldn’t they do it for ME?” The public are able to see things like sensory issues, nutritional intake in other illnesses are easily overcome by Drs all the time. Shining the light on this behaviour by Drs is what’s going to change it. Now everybody knows they’re passing the buck.

 

[rvallee]

Paul Keeble is also back on twitter
“Dr Weir is seeing patients as unwell as Maeve about every 6 months”
“Feeding in the community. NG then rapidly NJ then PEG most patients end up with PEG”
View attachment 22537

Good point about the 2002 report. There are several things in the past that have documented this, reports, commissions, studies and so on, that show how none of this is new. The fanatical obsession to stick with debunked dogma is very disturbing, it shows extremely rigid thinking that simply ignores reality and adheres to fantasy models instead.

It can't be said that those were too small or obscure when there are headlines and other media reports featuring the same problems, of patients begging for help going back decades. The old "so myshsterious, dunno wut tu du" is so damn old and out of line.

This is where legal proceedings can be very useful, if they have the capacity to dig into precedent, into how much this has been discussed in the past and how those deaths are all preventable, and that the deaths are a tiny part of a giant problem that is also documented more than thoroughly enough that those actions constitute clear criminal negligence, a status avoided only because of a "if the government does it, that means that it's not illegal" Nixonian defense.

 

[Sid]

I assume this is Dr Strain.
I know I'm commenting on incomplete information third hand, but we really need our advocates to understand that the most significant problems with the PACE trial and others like it don't include participant selection. It makes it seem that the treatments work for some trial participants. No. The trials are flawed because bias is created by using subjective outcomes with treatments that are not only unblinded but actively encourage participants to ignore their symptoms. And, even then, the outcomes have been essentially indistinguishable from no treatment. The treatments haven't worked.

That comment about patient selection really annoyed me. The whole point is that the treatments worked for nobody (recovery rate approx 5%).

 

[Kitty]

it's not the beds, it's the staff and equipment. You can have as many beds as you want, they need competent staff with adequate resources.

The word beds does usually mean the whole package. It's a shorthand for provision—staffing, clinical expertise, equipment, facilities—and although I agree it's a rubbish headline, it is the sort of wording used in reports about inpatient provision.

competent care

It includes this too in theory, but not necessarily in practice. Even when everything is funded and in place, a couple of objectionable, uncaring, or badly trained human beings can sabotage the entire thing. And all too often does.

 

[Nightsong]

The final witness was also from DCC, Ben Fairs (sp?), social worker. Did not meet Maeve in person.

Talking about the attempt to conduct a joint visit with GP & describes the council's concerns at the time. In particular he seemed surprised at being turned away when there was an attempted visit; says SB called him to explain matters & that Maeve could leave voice notes. The council didn't seem to have been satisfied with this at first; talk of "safeguarding concerns". A discussion about the resolution of these concerns as a result of voice messages from Maeve, GP input, etc followed. The witness was also concerned that the care assessment that should have been personalised (apparently a policy requirement) had not been.

Coroner asks if there are social care teams that address specific disabilities: he mentions autism & ADHD teams but no teams for specific disabilities & also that it is difficult to perform an assessment when someone is "in and out" of hospital. SB asks a number of questions, and, in a poignant moment, and asks him if can now imagine why he was not allowed in, in that home visit, and if he understands more about severe ME now.

Clear that there was no real understanding of very severe ME amongst the social workers.

The coroner mentions that tomorrow the witnesses will be Drs Roy and Warren.

That is the end of the inquest for today. I need to go back and edit some of these posts for clarity but hope that the updates have helped those who couldn't listen in.

 

[MrMagoo]

Paul Keeble has some final comments on Social Care, apparently Dr Roy will be questioned tomorrow morning

Maeve raised a safeguarding concern herself, about lack of care for her from the Council; Council has no record of this.
Sarah Boothby was left to care for Maeve despite telling Council she couldn’t cope.

thees also reference to a meeting with Council Sept 27, lack of clarity on what a hospital admission would do.

 

[Binkie4]

Thank you @Nightsong, and others reporting.

 

[Binkie4]

Good article in hard copy of Times, p15, by Fiona Hamilton, Chief Reporter, covering most of page.

Headline 'ME patients are failed by lack of wards and woeful research'. Clearly written article covering Dr Strain's evidence yesterday.

 

[Sly Saint]

Article in online Times (needs sub)

NHS staff thought patient’s illness was self-inflicted, inquest told
A consultant says he warned a trust’s chief executive that doctors and nurses with ‘outdated attitudes’ were failing Maeve Boothby O’Neill, who later died of ME

new
Fiona Hamilton
, Chief Reporter
Wednesday July 24 2024, 2.45pm, The Times

Maeve Boothby O’Neill, who was too exhausted to eat, was eventually offered intravenous feeding but she said it was “too late”
PA


A Harley Street consultant warned an NHS chief executive that a young patient with ME who was at risk of death was being failed by hospital staff who held “outdated attitudes” that her condition was self-inflicted, an inquest has heard.

Dr William Weir, the country’s leading expert on myalgic encephalomyelitis, said that a “significant proportion” of staff at the Royal Devon and Exeter Hospital regarded Maeve Boothby O’Neill’s illness as “her fault”, which affected her care.

Weir emphasised to Suzanne Tracey, who was head of the hospital trust at the time, the “apathy” of NHS staff to intravenous feeding, which would “almost certainly be lifesaving treatment”, the inquest heard.

Tracey did not respond to his letter, which was sent three weeks before Boothby O’Neill



UKHealthcare
Related articles

NHS ‘has no specialist ward for ME patients’
July 23 2024, 6.45pm
Fiona Hamilton
, Chief Reporter


Dying ME patient begged GP: ‘Please help me get enough food’
July 22 2024, 4.25pm
Fiona Hamilton
, Chief Reporter

NHS staff thought patient’s illness was self-inflicted, inquest told (thetimes.com)

 

[Jonathan Edwards]

One key point for me is the claim that RCP guidelines say that TPN should not be used where there is a functioning gut unless the patient is detained under the Mental Health Act (sectioned).

Being sectioned is not a feature of the patient's illness and not something they have control over. It depends entirely on opinions of doctors. So it is not the patient's fault for not being sectioned.

As far as I can see the argument for sticking to the rule and not using TPN is invalid because it was well understood by at least some of those involved know that she was at risk of dying and so the rational option was to section her, if that is what was required. (Which of course it wasn't because guidelines should always be subject to sensible overruling. I doubt anyone would argue that the guideline is intended to allow people with ME/CFS to die).

Sectioning might have seemed inappropriate but if the argument is that they are physiologically capable of eating then presumably the assumption is that they are not of sound mind if they starve to death. You cannot argue both ways.

Moreover, rules on sectioning are routinely manipulated, as I understand it. My wife was sectioned in order to have ECT because it was the rule that people have to be sectioned to have ECT. But she was perfectly happy to have the ECT so there was no actual need for the sectioning other than to jump through the hoop of the guideline.

Of course the right answer is that there should not be any such rule about requirement for sectioning for TPN. It doesn't make sense. It is presumably there in the context of anorexia nervosa, but someone (or a whole committee) has failed to understand the logic involved.

 

[NelliePledge]

It appears to me (as a lawyer myself) that the Health Trust (RD&E), the local authority (DCC) and the GP surgery are all legally represented.

It is the duty of every lawyer to represent the interests of their client. This involves cross-examination of witnesses to test the evidence.

It's professional, not personal, however unpleasant it may sound.

I've seen nothing untoward so far - but, inevitably, watching this is deeply upsetting on a personal level for most members of the ME community (including me).

Thanks for clarifying. I hope the cross examination of Dr Roy and others - those who took the decision to overrule the placement on neuro ward for example will test their evidence to the same degree.

 

[MrMagoo]

One key point for me is the claim that RCP guidelines say that TPN should not be used where there is a functioning gut unless the patient is detained under the Mental Health Act (sectioned).

Being sectioned is not a feature of the patient's illness and not something they have control over. It depends entirely on opinions of doctors. So it is not the patient's fault for not being sectioned.

As far as I can see the argument for sticking to the rule and not using TPN is invalid because it was well understood by at least some of those involved know that she was at risk of dying and so the rational option was to section her, if that is what was required. (Which of course it wasn't because guidelines should always be subject to sensible overruling. I doubt anyone would argue that the guideline is intended to allow people with ME/CFS to die).


Sectioning might have seemed inappropriate but if the argument is that they are physiologically capable of eating then presumably the assumption is that they are not of sound mind if they starve to death. You cannot argue both ways.

Moreover, rules on sectioning are routinely manipulated, as I understand it. My wife was sectioned in order to have ECT because it was the rule that people have to be sectioned to have ECT. But she was perfectly happy to have the ECT so there was no actual need for the sectioning other than to jump through the hoop of the guideline.

Of course the right answer is that there should not be any such rule about requirement for sectioning for TPN. It doesn't make sense. It is presumably there in the context of anorexia nervosa, but someone (or a whole committee) has failed to understand the logic involved.

Dr Roy’s evidence on this will be interesting.
Dan Wyke on X twitter says tomorrow will be Dr Roy, Dr Warren and maybe Dr Tate (I’m not familiar with these or their specialities)

Report of todays inquest in The Canary
(I don’t know how to copy the text. sorry)
https://www.thecanary.co/opinion/2024/07/24/maeve-inquest-day-three-mecfs/
This report confirms that RD&E Hospital has Counsel representing and asking questions (in a “robotic monotone” apparently) The article is very critical of Dr Strain.

 

[bobbler]

Good point about the 2002 report. There are several things in the past that have documented this, reports, commissions, studies and so on, that show how none of this is new. The fanatical obsession to stick with debunked dogma is very disturbing, it shows extremely rigid thinking that simply ignores reality and adheres to fantasy models instead.

It can't be said that those were too small or obscure when there are headlines and other media reports featuring the same problems, of patients begging for help going back decades. The old "so myshsterious, dunno wut tu du" is so damn old and out of line.

This is where legal proceedings can be very useful, if they have the capacity to dig into precedent, into how much this has been discussed in the past and how those deaths are all preventable, and that the deaths are a tiny part of a giant problem that is also documented more than thoroughly enough that those actions constitute clear criminal negligence, a status avoided only because of a "if the government does it, that means that it's not illegal" Nixonian defense.

well said, and I like

The old "so myshsterious, dunno wut tu du" is so damn old and out of line.

 

[Haveyoutriedyoga]

Also, in August 2021 when the Royal Devon and Exeter hospital discharged her again, the council failed to do an updated care plan for her. The council had also stipulated that care staff could not assist with food and fluids – leaving it to Sarah, Maeve’s mother.

In The Canary article of Weds 24th

I believe home care services can’t administer food, drink or medication, I think that’s for nursing staff to do. It does seem that in these situations where you have a need and the agency in front of you doesn’t provide for that need they just say no (and a lot of the time I have noticed that nobody takes responsibility for a. Explaining that to you properly so you understand what needs to happen or where to go, or b. Supporting you to get that need met).

 

[MrMagoo]

In The Canary article of Weds 24th

I believe home care services can’t administer food, drink or medication, I think that’s for nursing staff to do. It does seem that in these situations where you have a need and the agency in front of you doesn’t provide for that need they just say no (and a lot of the time I have noticed that nobody takes responsibility for a. Explaining that to you properly so you understand what needs to happen or where to go, or b. Supporting you to get that need met).

It seems this is under the Heath &Social Care Act 2008 Regulations 2014 Regulation 14
https://www.cqc.org.uk/guidance-pro...lation-14-meeting-nutritional-hydration-needs

The Council basically said they couldn’t do an assessment for Care purposes, and when Maeve was discharged from the eating disorder ward they advised the Council (wrongly) and then on the 3rd discharge, nothing.

 

[rvallee]

It doesn't look like it's been posted and made accessible over the paywall, so I can't check if it's mentioned in this article that there currently are 'more Maeves' right now, two that we know of in the NHS and likely more.

https://www.thetimes.com/uk/healthc...ainst-expert-advice-before-she-died-986td9d3h

Skepticism and disbelief is a key issue in case of Maeve Boothby O'Neill, ME patient who died at 27. Against consultant + expert advice, she was put on eating disorder ward. My report on how there will be "more Maeves" without attitude change.

https://twitter.com/user/status/1816092832215515435

 

[Nightsong]

It doesn't look like it's been posted and made accessible over the paywall

https://archive.is/20240723181038/h...ainst-expert-advice-before-she-died-986td9d3h

 

[Cinders66]

It seems this is under the Heath &Social Care Act 2008 Regulations 2014 Regulation 14
https://www.cqc.org.uk/guidance-pro...lation-14-meeting-nutritional-hydration-needs

The Council basically said they couldn’t do an assessment for Care purposes, and when Maeve was discharged from the eating disorder ward they advised the Council (wrongly) and then on the 3rd discharge, nothing.

In The Canary article of Weds 24th

I believe home care services can’t administer food, drink or medication, I think that’s for nursing staff to do. It does seem that in these situations where you have a need and the agency in front of you doesn’t provide for that need they just say no (and a lot of the time I have noticed that nobody takes responsibility for a. Explaining that to you properly so you understand what needs to happen or where to go, or b. Supporting you to get that need met).

Some can. I have a normal care agency. It’s just run by a nurse but the care team do my tube feeding, meds and order my meds. And there is of course nhs nursing care for those with more “complex” needs.

 

[MrMagoo]

Some can. I have a normal care agency. It’s just run by a nurse but the care team do my tube feeding, meds and order my meds. And there is of course nhs nursing care for those with more “complex” needs.

The Council had a number of reasons why they couldn’t assess Maeve, essentially because she was too unwell to be visited by a social worker to be assessed, she was “in and out” of hospital. None of it is good enough. People are treated at home all the time.
I do wonder whether the Council could face formal action, from the CQC maybe?