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

Good report in the Standard:
https://www.standard.co.uk/news/crime/exeter-doctors-plymouth-andrew-gwynne-b1175734.html

This is how the report ends:

In her conclusions, the coroner said: “In making the findings I have, I hope that important lessons for future treatment of ME can be learned from her death.​

“No doubt with the benefit of hindsight things will be different in many respects.”​

Andrew Gwynne, minister for public health and prevention, said: “Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart-wrenching example of a patient falling through the cracks.​

“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.​

“I am committed to improving the care and support for all those affected, and we intend to publish a final delivery plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.”​
 
Sbag said:
Nearly all of the witnesses were asked if they believed ME was a physical or psychological illness.

They all replied that they believed ME was a real illness.

Some of them then went on to say there was no known aetiology. But none of them were then presented with the next question which would have directed them back to whether they thought it was physical or psychological.

So they each managed to side step the question and nothing more was said. It seemed a glaring issue to me but the coroner was obviously satisfied with what she had been told.

In another article discussing how coroners courts work it stood out to me that the people who are essentially defending themselves are also being used as the expert witnesses. There are no attempts to use independent experts to give an alternative viewpoint.
(Dr Weir was not there as as expert but to give evidence about his involvement in the case)
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Agreed, I can see how the “ordinary person” is in a David and Goliath situation with the institutes with legal teams.
 
Gutted. I find it hard to understand how the coroner believed what the medical and social services staff said in court when so many of their notes completely contradict that, instead suspecting psychological issues.

At the very least though, the findings may inform the public that ME can actually be fatal and is a serious illness.
 
Sbag said:
Nearly all of the witnesses were asked if they believed ME was a physical or psychological illness.

They all replied that they believed ME was a real illness.

Some of them then went on to say there was no known aetiology. But none of them were then presented with the next question which would have directed them back to whether they thought it was physical or psychological.

So they each managed to side step the question and nothing more was said. It seemed a glaring issue to me but the coroner was obviously satisfied with what she had been told.

In another article discussing how coroners courts work it stood out to me that the people who are essentially defending themselves are also being used as the expert witnesses. There are no attempts to use independent experts to give an alternative viewpoint.
(Dr Weir was not there as as expert but to give evidence about his involvement in the case)
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If the hospital doctors were asked if they thought the thing was one kind of thing or the other, and they answered yes to neither, but said it was another kind of thing altogether which it may or may not be depending on Philosophy, but that wasn’t a medical thing and they were being asked to name the thing in relation to medicine and medical terminology which they failed to do with this answer, thusly meaning that they didn’t answer the question, that is something that a lawyer would notice. No medical knowledge required.

So I didn’t hear testimony but if that’s how it went down, it’s not lack of specialist knowledge in this area that stopped the coroner asking further questions. She wasn’t tricked here unless you’d have reason to believe she doesn’t possess the skills to basic requirements of legal training.
 
Ash said:
If the hospital doctors were asked if they thought the thing was one kind of thing or the other, and they answered yes to neither, but said it was another kind of thing altogether which it may or may not be depending on Philosophy, but that wasn’t a medical thing and they were being asked to name the thing in relation to medicine and medical terminology which they failed to do with this answer, thusly meaning that they didn’t answer the question, that is something that a lawyer would notice. No medical knowledge required.

So I didn’t hear testimony but if that’s how it went down, it’s not lack of specialist knowledge in this area that stopped the coroner asking further questions. She wasn’t tricked here unless you’d have reason to believe she doesn’t possess the skills to basic requirements of legal training.
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I am not suggesting she doesn’t possess the skills. I think it is more that she had an adequate answer in that they thought it was a real illness.

whereas if it had been one of us asking we would have seen more than that and asked again whether they thought physical etc.

I think different backgrounds and knowledge make each of us see things and hear things differently. To anyone else someone saying they think it’s a real illness means it is physical. But we know that’s not necessarily the case and in these instances they were toeing the line they had been given.
It was very clear that that it was rehearsed as they all gave the same answer very quickly and without pausing to think about it.
Only one witness that I recall was pressed further on it and they then flustered about it and said that there was no known cause and therefore it couldn’t be ruled either way.
 
Sbag said:
I am not suggesting she doesn’t possess the skills. I think it is more that she had an adequate answer in that they thought it was a real illness.

whereas if it had been one of us asking we would have seen more than that and asked again whether they thought physical etc.

I think different backgrounds and knowledge make each of us see things and hear things differently. To anyone else someone saying they think it’s a real illness means it is physical. But we know that’s not necessarily the case and in these instances they were toeing the line they had been given.
It was very clear that that it was rehearsed as they all gave the same answer very quickly and without pausing to think about it.
Only one witness that I recall was pressed further on it and they then flustered about it and said that there was no known cause and therefore it couldn’t be ruled either way.
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I’m saying as a lawyer she needed no special knowledge of ME medical politics in order to notice that those she questioned hadn’t answered her question as it was put to them. In the terms that it was put to them. On her terms.
 
Sadly I can see how the Coroner came to the verdict, from a legal point of view.
I have hopes for the Future Prevention of Death because the Hospital Trust has said there are no specialist ME beds anywhere. There are no ME lead consultant specialists for SVS ME.

The Coroner was likely never going to focus on or find that doctors “think ME is all in the mind” because that problem is systemic, leading to individuals acting as they did.
 
Sbag said:
I think different backgrounds and knowledge make each of us see things and hear things differently. To anyone else someone saying they think it’s a real illness means it is physical.
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Yes
& since advocacy efforts in general are often still focussing on whether it's "real" or not, its hardly surprising that when the drs said 'yes its real', the coroner assumed that meant that they didnt think it was 'not psychosomatic'. Particularly after that one doc gave a disingenuous reply about whats meant by 'functional'.

Obviously the outcome is a travesty, but i can see it going 2 ways.. maybe both.

1)people think 'wow ME can kill you' - which is more likely to be a gen public response

2)people think 'wow if we dont intervene & "help" these poor people, they will end up dying'. Which is more likely to be the medcial response.... :eek:

Terrifyingly, we know what the interventions & 'help' are likely to involve.

People will be even more likely to try & stay off Drs' radar no, i know i will.
 
Sbag said:
Nearly all of the witnesses were asked if they believed ME was a physical or psychological illness.

They all replied that they believed ME was a real illness.

Some of them then went on to say there was no known aetiology. But none of them were then presented with the next question which would have directed them back to whether they thought it was physical or psychological.

So they each managed to side step the question and nothing more was said. It seemed a glaring issue to me but the coroner was obviously satisfied with what she had been told.

In another article discussing how coroners courts work it stood out to me that the people who are essentially defending themselves are also being used as the expert witnesses. There are no attempts to use independent experts to give an alternative viewpoint.
(Dr Weir was not there as as expert but to give evidence about his involvement in the case)
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I wonder if an appeal or a civil hearing might tease this nuance out where someone can get cross examined better but it would be an awful lot for the family to put themselves through with probably negligible odds of any satisfaction, the system doesn't want to know.

I think the scale and extent mistreatment we endure due to the psychologisation is impossible to grasp and believe unless experienced directly.

I only hope some systemic recommendations comes out of the 27 September and the high profile makes it harder for other hospitals to repeat this same tragedy - especially given that there are some very concerning cases of other individuals at risk in hospital


JemPD said:
Yes
& since advocacy efforts in general are often still focussing on whether it's "real" or not, its hardly surprising that when the drs said 'yes its real', the coroner assumed that meant that they didnt think it was 'not psychosomatic'. Particularly after that one doc gave a disingenuous reply about whats meant by 'functional'.

Obviously the outcome is a travesty, but i can see it going 2 ways.. maybe both.

1)people think 'wow ME can kill you' - which is more likely to be a gen public response

2)people think 'wow if we dont intervene & "help" these poor people, they will end up dying'. Which is more likely to be the medcial response.... :eek:

Terrifyingly, we know what the interventions & 'help' are likely to involve.

People will be even more likely to try & stay off Drs' radar no, i know i will.
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That was the first thing my husband said to me - "we have to avoid hospital now, it's not safe. "
 
The outcome was mostly what I expected, though that hasn't make it any easier to hear. It would have been impossible for the coroner to say that Maeve's death might have been prevented, or that an individual doctor took unreasonable decisions. There's too little evidence, too few case histories for anyone to argue the doctors should have known that X or Y was a better course of action.

I really hope the coroner's going to recommend better training for doctors and better provision in hospitals. Some of what allowed this to happen is a long way up in the system, and if that doesn't change, it'll almost certainly happen again.

I feel for Maeve's family today. Even if it's exactly what they were expecting, it must still be unbearable.
 
Sean O'Neill on Twitter,

"It's important that Maeve's inquest recognised the seriousness of this awful illness. What is more important is the final hearing on Sept 27 to consider a Prevention of Future Deaths report.

The public health minister @GwynneMP understands ME and says Maeve "fell through the cracks". Actually it's worse. She fell into a gaping hole in our healthcare system where there was no specialsit care for her illness. This was a systemic failure not the fault of one hospital.

and, to people with ME, Tell Your Stories. Don't rant on twitter. Tell your MP, your local newspaper or website, your local radio station. And all you journo colleagues who have told me about your friends and relatives with ME, make their voices heard. Now."

https://twitter.com/user/status/1821965354286870582
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MrMagoo said:
Sadly I can see how the Coroner came to the verdict, from a legal point of view.
I have hopes for the Future Prevention of Death because the Hospital Trust has said there are no specialist ME beds anywhere. There are no ME lead consultant specialists for SVS ME.

The Coroner was likely never going to focus on or find that doctors “think ME is all in the mind” because that problem is systemic, leading to individuals acting as they did.
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I wouldn’t expect her to find that either.

But coroner could have found that medics were unfortunately distracted from the immediate problem in hand a starving patient whose first requirement was nutrition trying to decide whether their patient fitted best in their own services or psychiatric services. Since they couldn’t immediately prove that their patient lacked capacity they should have fed her first time around.
 
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Kitty said:
It would have been impossible for the coroner to say that Maeve's death might have been prevented, or that an individual doctor took unreasonable decisions.
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Just quoting my own post in case this appears out of sequence: one of the important things about this verdict is that it is itself evidence.

Doctors and hospital boards cannot now say they didn't know severe ME can be fatal.
 
Summary from Action for ME,

"The coroner provided a very detailed overview of all the evidence and chronology of events from Maeve’s first diagnosis of ME to involvement from her GPs, hospital admissions and the last few days of Maeve’s life. The recorded cause of Maeve’s death will be one of natural causes, specifically malnutrition which was caused by severe Myalgic Encephalomyelitis. It will be stated that Maeve died at home after three admissions to hospital where they were unable to treat her Myalgic Encephalomyelitis. Repeatedly through her reading of findings, the coroner outlined her hope that the inquest will lead to improved care and support for people with ME in the future.

The coroner highlighted the lack of knowledge and understanding of ME and how to treat it on a number of occasions. She stated that there were several factors, including delays and communication errors between professionals, which may have contributed to Maeve’s deterioration, but she could not say the factors caused or contributed to her death. Nevertheless, they were important to note.

The coroner stated that she did not find any of the clinicians disbelieved that ME was a real illness or that they held a concerning view of the illness. She highlighted some concerns about record keeping and asked the NHS Trust to ensure that they address all of her concerns, if not already, in the hearing on 27 September on the prevention of future deaths. She also highlighted that a named healthcare professional should have been appointed to coordinate Maeve’s care as soon as it was realised she required admission to hospital and that it was ‘unrealistic’ for Maeve to have been discharged home on the second (of three) occasions from hospital without a 24-hour care package in place.

The coroner was unable to conclude that Maeve failed to receive the care that she needed as someone with severe ME because of the lack of knowledge that currently exists. Despite this, more work must be done to ensure the factors that led to Maeve’s death are never repeated and that people with ME are properly cared for."

https://www.actionforme.org.uk/news/maeve-boothby-oneill-inquest-conclusion/

https://twitter.com/user/status/1821964886580027775
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