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

Kitty said:
Maybe one effective strategy might to call for research for which a reasonable case can be made and which is do-able without a need to spend years fundraising and laying the groundwork.

One approach would be trialling different feeding methods, with whatever nursing resources are needed.

Another is whether judicious use of benzodiazepines could help people with very severe ME navigate necessary procedures like tube placement. Does it make it less intolerable, does it lead to better outcomes, does it add further complications? Might short term, lowest dose medication make the first week more tolerable until the gut begins to adapt?

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I agree, though it may be hard to extend the results to someone as severely ill as Maeve, but at least there would be some more research to draw from!

Your mention of benzodiazepines also puts me in mind of how Abilify allows Whitney Dafoe to tolerate more during the time he’s taking it – if I remember rightly, I think it helps him to get to hospital and back via gurney. That would also be extremely useful research and if we knew the benefits/risks now maybe it could even have been a consideration for Maeve.
 
RainbowCloud said:
Your mention of benzodiazepines also puts me in mind of how Abilify allows Whitney Dafoe to tolerate more during the time he’s taking it – if I remember rightly, I think it helps him to get to hospital and back via gurney. That would also be extremely useful research and if we knew the benefits/risks now maybe it could even have been a consideration for Maeve.
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Yes, I don't know much about the Abilify, but I've read about him using lorazepam to help tolerate some journeys or procedures.

It would be interesting to know whether this helps other patients get through, or actually reduces after-effects. As long as they have no respiratory issues, there might be a reasonable case for trialling it.
 
MrMagoo said:
I can’t articulate very well the sense I’m getting, but I’m feeling like we’re going to be disappointed if we’re expecting a full-on explosive decision.
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What is likely to occur, I think, is that the coroner will find that systemic failures led or contributed to the death. After she issues her report next Friday, she has tentatively scheduled a day for testimony from the medical director of the hospital, and that would be expected to lead to a report with recommendatons for changes on how to prevent this in future.

I think it's important to remember that neither of the parents is seeking retribution or punishment against any individuals involved or the hospital itself. They want systemic change. The staff generally did what they were trained to do and were expected to do per NHS policy/procedures. None of them were prepared or trained to handle this terrible situation. Stupid? Yes. But obviously no one wanted this outcome or intended for it to happen. I think it's wise to follow Sean's and Sarah's lead in what they hope to get out of this process.
 
dave30th said:
What is likely to occur, I think, is that the coroner will find that systemic failures led or contributed to the death. After she issues her report next Friday, she has tentatively scheduled a day for testimony from the medical director of the hospital, and that would be expected to lead to a report with recommendatons for changes on how to prevent this in future.

I think it's important to remember that neither of the parents is seeking retribution or punishment against any individuals involved or the hospital itself. They want systemic change. The staff generally did what they were trained to do and were expected to do per NHS policy/procedures. None of them were prepared or trained to handle this terrible situation. Stupid? Yes. But obviously no one wanted this outcome or intended for it to happen. I think it's wise to follow Sean's and Sarah's lead in what they hope to get out of this process.
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This, thank you.
The Coroner will likely conclude medics/DCC didn’t have appropriate training or knowledge. We know that gap exists thanks to BPS - the Coroner will recommend that gap is filled.

I think Sean has probably been very canny in referencing the BPS brigade and the disbelief of medics and others. The coroner likely wont have much to say on that- but Sean’s got it on the front page of national newspapers, that’s very powerful.
 
MrMagoo said:
I think the hospital’s view is they did everything they were able to then she discharged herself against medical advice.
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Whereby "medical advice" was utterly failing to do good and actively doing considerable harm — to an extraordinary degree, ultimately fatal. Recognising their complete failure, she discharged herself with rational competence.
 
SNT Gatchaman said:
Whereby "medical advice" was utterly failing to do good and actively doing considerable harm — to an extraordinary degree, ultimately fatal. Recognising their complete failure, she discharged herself with rational competence.
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This is the thing, to some extent we’ll have to manage our expectations about the outcome as it will never go far enough for us. My “work brain” is flagging that to me, but my heart breaks, because I know exactly how this happened. We all do.
 
MrMagoo said:
I think Sean has probably been very canny in referencing the BPS brigade and the disbelief of medics and others.
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They seem generally to be laying low during this--except, of course, for Alastair Miller's piece last weekend. Other than that, I haven't seen any of them pop up, and it doesn't seem like the journalists covering it have felt the need to seek out their opinions. Perhaps that's a change--that the knee-jerk instinct to gauge their response and add it to the debate is not so knee-jerk anymore.
 
dave30th said:
They seem generally to be laying low during this--except, of course, for Alastair Miller's piece last weekend. Other than that, I haven't seen any of them pop up, and it doesn't seem like the journalists covering it have felt the need to seek out their opinions. Perhaps that's a change--that the knee-jerk instinct to gauge their response and add it to the debate is not so knee-jerk anymore.
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They know the tide has turned and that’s why the best they can do is that “I’m an agreeable chap, let’s all join together” bit by Miller. Whilst they try to get their teeth into Covid and FND
 
dave30th said:
I think it's important to remember that neither of the parents is seeking retribution or punishment against any individuals involved or the hospital itself. They want systemic change. The staff generally did what they were trained to do and were expected to do per NHS policy/procedures. None of them were prepared or trained to handle this terrible situation. Stupid? Yes. But obviously no one wanted this outcome or intended for it to happen. I think it's wise to follow Sean's and Sarah's lead in what they hope to get out of this process.
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Yes, this is a systemic failure. Obviously, particularly early on, there are a small number of individuals who have to take a very large chunk of the blame for kicking it all off and entrenching it (and continuing to do so to this day). But ultimately the problem is only going to be solved at the system level.
MrMagoo said:
I think Sean has probably been very canny in referencing the BPS brigade and the disbelief of medics and others. The coroner likely wont have much to say on that- but Sean’s got it on the front page of national newspapers, that’s very powerful.
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+1. He is an experienced journo, who knows how to play the media and public relations game.
MrMagoo said:
If we start from the theory that ME isn’t one thing, it’s a collection of illnesses which overlap or are similar, makes sense that some people find a treatment useful and others don’t.
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Single cause or process diseases can produce a wide range of symptoms. Brain cancer, for example. How that effects somebody depends on where in the brain it is.

Also, people naturally respond to and interpret the same experience in sometimes widely differing ways.

I don't think we can say too much about it for certain at this point. Can only keep a (reasonably) open mind.
MrMagoo said:
They know the tide has turned and that’s why the best they can do is that “I’m an agreeable chap, let’s all join together” bit by Miller. Whilst they try to get their teeth into Covid and FND
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Exactly. If anybody thinks the BPS club have actually changed their views or intentions. Think again. They have not. All that has changed is their marketing, and not even that by much.

They have not only not changed or backed down, let alone stopped and reversed course, they are instead clearly trying to massively expand their empire and insert themselves into every single clinical encounter. With considerable success, unfortunately.

Just look at how many of them are still in the most senior positions possible in the clinical, research, administrative, and policy advice spheres in medicine. And how easily they get prominence in the media.
 
Sean said:
Yes, this is a systemic failure. Obviously, particularly early on, there are a small number of individuals who have to take a very large chunk of the blame for kicking it all off and entrenching it (and continuing to do so to this day). But ultimately the problem is only going to be solved at the system level.

+1. He is an experienced journo, who knows how to play the media and public relations game.

Single cause or process diseases can produce a wide range of symptoms. Brain cancer, for example. How that effects somebody depends on where in the brain it is.

Also, people naturally respond to and interpret the same experience in sometimes widely differing ways.

I don't think we can say too much about it for certain at this point. Can only keep a (reasonably) open mind.

Exactly. If anybody thinks the BPS club have actually changed their views or intentions. Think again. They have not. All that has changed is their marketing, and not even that by much.

They have not only not changed or backed down, let alone stopped and reversed course, they are instead clearly trying to massively expand their empire and insert themselves into every single clinical encounter. With considerable success, unfortunately.

Just look at how many of them are still in the most senior positions possible in the clinical, research, administrative, and policy advice spheres in medicine. And how easily they get prominence in the media.
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Yes but they’re all becoming eligible for a free bus pass and pension
 
MrMagoo said:
Yes but they’re all becoming eligible for a free bus pass and pension
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And so are lots of ME sufferers. We are the same age as Wessely/White/Sharpe etc. But we have no private pension to look forward to. We are just praying to not be placed in care homes with managers and staff brainwashed by the 'they must exercise' ideology.

What the hell was the point of all our years of doing advocacy - when we will very soon be old, sick and helpless, and abused in care homes for the elderly? Hmm? And what are our so called Charities doing about it? NOTHING!

.
 
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