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

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).

 

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.

 

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.

 

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

 

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.

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.

 

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.

 

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.

 

Thank you @Nightsong, and others reporting.

 

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.

 

Article in online Times (needs sub)

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

 

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.

 

well said, and I like

 

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.

 

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

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

 

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

 

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?