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

Telegraph article - "No NHS wards equipped to deal with severe ME, inquest hears":

https://www.telegraph.co.uk/news/20...ipped-severe-me-inquest-maeve-boothby-oneill/

Some of the measures Strain's hospital has introduced are mentioned:
Dr Strain said that some special features to treat the condition had been introduced at the RD&E since Ms Boothby O’Neill’s death at her home in Exeter.

These include screened-off areas, silence around patients, blackout curtains, no perfume or aftershave to be worn by staff for risk of triggering a reaction, familiar voices and less intrusive observation.
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Haveyoutriedyoga said:
I wonder if it would be good to ask ICBs a question at their next board meetings about something on this topic - what would be a good question?
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"How many people with severe and very severe ME/CFS live within your Integrated Care System?" (to draw attention to the fact that they have no idea)

"Are the hospitals in your system caring appropriately for patients with severe ME as inpatients and outpatients?"

"Are your services ensuring people with severe ME supported and cared for at home according to their needs and wishes?"

They are not quite pointed enough, shouldn't be able to be answered with a general "we follow guidance on xyz and have no complaints of xyz and have community nurses for patients with ongoing care needs etc etc etc"

ETA:
"Are the hospitals in your system caring appropriately for patients with severe ME as inpatients, ensuring measures including screened-off areas, silence around patients, blackout curtains, no perfume or aftershave to be worn by staff for risk of triggering a reaction, familiar voices and less intrusive observation?"
 
Haveyoutriedyoga said:
"How many people with severe and very severe ME/CFS live within your Integrated Care System?" (to draw attention to the fact that they have no idea)

"Are the hospitals in your system caring appropriately for patients with severe ME as inpatients and outpatients?"

"Are your services ensuring people with severe ME supported and cared for at home according to their needs and wishes?"

They are not quite pointed enough, shouldn't be able to be answered with a general "we follow guidance on xyz and have no complaints of xyz and have community nurses for patients with ongoing care needs etc etc etc"

ETA:
"Are the hospitals in your system caring appropriately for patients with severe ME as inpatients, ensuring measures including screened-off areas, silence around patients, blackout curtains, no perfume or aftershave to be worn by staff for risk of triggering a reaction, familiar voices and less intrusive observation?"
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I think I’d do a leading introduction “It was said at a recent Coroner’s Inquiry that there is no specialist service for severe ME in the NHS. Does your area provide any services to patients with Severe or Very Severe ME/CFS?
What accommodations are in place for pw S/VS ME please state
Have you trained any staff on treating patients…

etc
 
Nightsong said:
Telegraph article - "No NHS wards equipped to deal with severe ME, inquest hears":

https://www.telegraph.co.uk/news/20...ipped-severe-me-inquest-maeve-boothby-oneill/

Some of the measures Strain's hospital has introduced are mentioned:
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OMG there are 2 types of people in the Comments to the Excellent Telegraph article.

1/ ME literate types who have actually read the article.

2/ Types who have not read the article, or who have but choose to behave like trolls and ghouls - making truly shocking statements such as -

"She refused treatment to keep her alive, so it’s unclear exactly what she wanted.
There is no cure for many diseases, that unfortunately is a fact of life. But it seems she couldn’t accept that."


And other Comments along those lines. I despair of my fellow humans -

.
 
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MrMagoo said:
I think I’d do a leading introduction “It was said at a recent Coroner’s Inquiry that there is no specialist service for severe ME in the NHS. Does your area provide any services to patients with Severe or Very Severe ME/CFS?
What accommodations are in place for pw S/VS ME please state
Have you trained any staff on treating patients…

etc
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Good point, thanks.

Actually maybe also getting our local Health Overview and Scruitiny Panels to pursue it in some way too would be sensible, they can ask organisations to come and answer their questions, not 100% sure how it works - maybe the local councillors do it if they have been lobbied enough
 
A couple of other things that I noted from today:

- he said that they had changed the way they dealt with ME patients from 2017 which went against the NICE guidelines at that time. He said”guidelines were for people who don’t work every day in that field”. Ie a GP could go and look at them. But because he was part of the committee reviewing the evidence he knew that the PACE trial had been debunked. He did go into a bit of detail about how the previous guidelines were all based on one study which used people that hadn’t been selected properly.

- when they had noted that Maeve had been discharged from the hospital ME service he clarified that if you are an ME patient there is no point in going back time and again to be told the same thing. It is a waste of the patients energy. So once they have been told about how to pace and manage their condition they are quite often discharged.

- when he was talking about drugs that had been given to Maeve he said at one point they tried Aspirin. This was because in other patients that had a viral flare up it had been shown that there was an increase in micro clots in the blood. So aspirin is given and it helps reduce them. (Only including this as I hadn’t heard of it but it has probably been discussed elsewhere in the forum and I just haven’t seen it)

- ETA - there were no electronic records in the hospital when Maeve was an inpatient. So after Dr Strain would ask/tell a team when he wanted them to do (put her on a particular ward / give her an NG tube) he wouldn’t be able to check and see if it had been done. He would have needed to go on to the ward to see. But at the time he was working on covid wards so he wasn’t able to go on to the other wards just to check. So there were incidences when it was a week later that he would find out that his instructions had not been carried out.
 
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Another article in the Daily Mail - "Doctors treating woman who died from debilitating ME 'did not believe it was a medical problem', inquest hears"

https://www.dailymail.co.uk/news/ar...ot-believe-medical-problem-inquest-hears.html
On the second day of the inquest into her death in Exeter, Devon, a medical report about Ms Boothby O'Neill written by her GP was read to the court.

Dr Lucy Shenton was left devastated by her death and felt too traumatised to give evidence in person to the inquest, instead providing written statements.
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The GP told Ms Boothby O'Neill's family she had 'never seen anyone so poorly treated by the NHS as Maeve was'
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From the GP's report:
'I am reporting this death due to the complexity of the case. There is currently no guidance about the management of severe ME.

'Several doctors involved in her care stated they do not believe ME is a medical problem. I do not feel I can put down Myalgic Encephalomyelitis on her death certificate without raising this for your personal attention.'
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Infuriating, and heartbreaking.
 
MrMagoo said:
Apparently starts at 9.30am tomorrow
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Today I could hear much better. I was in the courtroom but was listening through the online audio with my earbuds and could hear pretty clearly most of what was said--although not possible to type it all down in real time. the only issues were when the sound wasn't working--of course I thought it was my problem, given my longstanding problems handling technology--but of course it wasn't me but the system.

Willy Weir was supposed to testify this afternoon. But Strain's appearance took a long time, and then all the interested parties, including Sean and Sarah, had time to ask their own questions. It's all kind of informal. The coroner wanted some time to finalize the questions being sent to the GP, so bumped Willy till tomorrow and made it an earlier start, since there are two more witnesses also scheduled tomorrow. The coroner didn't think Willy or the next two would take as long.

I have no idea how these things usually go, but the coroner really seems in control of the process and, as with yesterday, seemed to have a good idea of what she wanted to have entered into the public record. She seems genuinely trying to parse out the medical details, including the various differences of opinion that emerged in the course of the events in person.

What stood out the most to me today was just the degree to which no one had any idea what to do in this situation, with various specialists within the. hospital orbit seemingly taking different positions, with no one appearing to be clear who was in charge overall, why and how decisions were being made, why recommendations were not followed through on (for example, why in one stay Maeve was housed in the eating disorders unit when the request from the multi-disciplinary team had been to have her in the neurology ward), why there was no back-up plan in case the nasal-gastro tube didn't resolve the nutrition issues--even though Maeve herself knew there needed to be a back-up plan. It's also really disturbing that, even in the weeks right before Maeve's death, when she was obviously declining rapidly, the hospital was re-considering whether this was a case of FII or Munchausen-by-proxy. Truly insane.

When I wrote my long piece about Maeve last year, I didn't have most of these details about the last months. It's incredible that families are still being trapped in this NHS nightmare even as this inquest is happening. I'm glad the daily coverage seems to be capturing this stuff.
 
I had forgotten that all this happened while Covid was at its worst. It is not that surprising that things might be confused. A lot of people died during the pandemic for reasons other than Covid. But I don't think this in any way alters the evidence that the management was disorganised and probably obstructed and the need for learning as many lessons as possible.
 
Jonathan Edwards said:
I had forgotten that all this happened while Covid was at its worst. It is not that surprising that things might be confused. A lot of people died during the pandemic for reasons other than Covid. But I don't think this in any way alters the evidence that the management was disorganised and probably obstructed and the need for learning as many lessons as possible.
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It was 2021, I’d say Covid was at its worst the year before in March 2020
 
Andy said:
https://www.bbc.co.uk/news/articles/cpd9vm8p2plo - latest BBC article
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I don't think the headline is very good, I think it blends the issue in with the general "hospitals are overrun and don't have enough beds" narrative, as if there's nothing unusual about a bed shortage. It also suggests that there are some specialist beds, just not enough, but actually there are none (as far as I understand it).

ME patients face specialist bed shortage - inquest
 
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Sly Saint said:
@Valerie Eliot Smith
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Thanks for the mention, @Sly Saint

Many of the main points about inquests have already been covered in previous posts but I'll do a quick overview now, in case it's helpful for people before the inquest continues tomorrow morning at 9.30am.

I've done a first draft fairly quickly in response to this mention so I may come back tomorrow and edit if necessary (probably will be!)
[ETA: some further minor edits now done]

When is an inquest required by the state?

Inquests take place in cases where the coroner decides that the death requires further investigation. A coroner must hold an inquest if:
  • the cause of death is still unknown
  • the person might have died a violent or unnatural death
  • the person might have died in prison or police custody
Coroners

Coroners are appointed by the local authority, not by the Judicial Appointments Commission. Coroners are judicial office-holders (like judges) with the usual accompanying powers and duties (eg. power to compel witnesses to attend hearings).

[ETA]: Coroners may sit with or without a jury.

Purpose of an inquest

Inquests are fact-finding processes. They are investigatory rather than adversarial, although there can be occasional challenging moments, given the sensitive nature of the subject matter. It is part of the coroner's function to manage such moments.

It is also a function of the coroner to manage and facilitate the giving of evidence. In Maeve’s case, the coroner has referred to around “6600 pages” of evidence.

An inquest is not a public inquiry, as the coroner in this case has emphasised. The remit of an inquest is much narrower and confined to the death in question.

The purpose of an inquest is to:

a) identify the medical cause of death
b) answer four questions about the death - who, when, where and how (usually the most difficult)
c) come to a conclusion (not a verdict) about the death

An inquest is not a trial nor is it about apportioning blame. It is confined to establishing the facts and reaching a conclusion.

Any criminal or civil liability is dealt with separately in different courts with different investigative processes.

Type of proceedings

Inquests are judicial proceedings and the rules of evidence apply. However, because of their inherent nature, they tend to be more informal and more flexible (depending on the individual coroner and the nature of the case, of course).

It is standard practice for the coroner to keep a focus on the person who has died and the bereaved parties who are always treated with respect and compassion.

Interested persons

"Interested persons/IP's" are designated by the coroner. This gives them a status (locus) in the proceedings. They includes eg. family members, healthcare professionals, care homes etc. They may or may not be legally represented.

In this case, the relevant bodies (local authority, the Health Trust and the GP practice) are legally represented but Sarah and Sean are not (legal aid is not usually available for inquests).

It is the job of the coroner to assist unrepresented parties and ensure that their voices are heard and appropriate challenges made when questioning witnesses.

Conclusions

The coroner will reach a conclusion. This can be either short form or long form ie. when more information is needed to describe the circumstances of the death.

Short form conclusions will generally be one of the following: [edited for clarity]
  • Natural causes
  • Accident or misadventure
  • Alcohol or drug related
  • Lawful/unlawful killing (criminal standard of proof required)
  • Industrial disease
  • Stillbirth
  • Road traffic accident
  • Suicide
  • Open conclusion
A long form conclusion is written as a "narrative conclusion" and sets out a longer description of the death in more detail.

Neglect [ETA]

Neglect has a restricted meaning according to the case law and should not be considered as a primary cause of death. It is not the same as negligence.

Prevention of future deaths report (Regulation 28)

In some cases, though not all by any means, the coroner may write a Prevention of Future Deaths report. This might happen in Maeve's case but nothing is certain.

From NHS England:

"The Coroners and Justice Act 2009 allows a coroner to issue a Regulation 28 Report to an individual, organisations, local authorities or government departments and their agencies where the coroner believes that action should be taken to prevent further deaths."

I hope that's of some use.
 
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