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

[Ash]

Hey everyone; I’m let’s say very dissatisfied by this outcome, of non preventable death. I’m not moving on and letting it go any time soon.

But there have been some really good things to happen out of this see above posts sprinkled through!

Could someone who regularly posts threads and therefore knows how to and finds it easy, maybe post a thread titled:

All the good to flow from Maeve Sarah & Sean’s Story

For me?

Then we can link to all the good stuff so far in the main threads and refuge there and feel inspired when it feels too heavy and too much?

Because as it is for people who can’t read much there is a lot of pain to get through, naturally given subject matter, before finding the gains made through this process.

 

[Ash]

I don’t see how such a policy could exist in the NHS it is such a large organisation it would be leaked, whistleblown.

No of course, not if they call it that.

What I mean is following the line of avoiding ‘unnecessary investigations’ is something on many a Cons letter for people with ME LC FM etc see also ‘counterproductive treatment’
these are real problems in healthcare, but they are being disingenuously applied all over as rationing tools.

I am sure there is guidance to not put people on feed that it will be difficult to get them off, advice that it’s dangerous for people to be on artificial feeding. Completely true. But what if they’re simply sidestepping the danger of not doing such procedures?


What if the guidance isn’t applied evenly across all patients groups or conditions?

 

[Trish]

Could someone who regularly posts threads and therefore knows how to and finds it easy, maybe post a thread titled:

All the good to flow from Maeve Sarah & Sean’s Story

For me?

I think it's probably too early to see what good will flow from this situation. Another thread would just split the discussion.

If you want a brief view of what has happened so far, maybe look at the summaries in the News in Brief, and read the main articles linked there, including David Tuller's pieces.

We have made it the top item for the last few weeks and will do again tomorrow.
Starts here:
https://www.s4me.info/threads/news-in-brief-july-2024.39237/#post-542972

 

[Binkie4]

Page 5 of the hard copy of the Times today is totally about Maeve, with a link to a leading article on page 23.

There is an article by Sean " What I know after painfully reliving my daughter's decline" - the NHS must ensure the plight of thousands of sufferers is erased by proper treatment.
Article at top of page " Pledge on ME after woman's death"quotes Andrew Gwynne, minister and more quotes from Sean including 'several professionals not believing her illness was real' and "palliative care was delayed because of this disbelief".
Leading article is second in length after one on riots. It's entitled " Legacy of Change" and writes about systemic failures in treatment of ME. It comments on Sarah and Sean's courage in seeking often painful answers over their daughter's death.

It hopes the coroner will issue 'a prevention of future deaths report as a blueprint for an M.E. treatment pathway' and that the health secretary puts it into practice.'

 

[Ash]

I think it's probably too early to see what good will flow from this situation. If you want a brief view of what has happened so far, maybe look at the summaries in the News in Brief, and read the main articles linked there, including David Tuller's pieces.

We have made it the top item for the last few weeks and will do again tomorrow.
Starts here:
https://www.s4me.info/threads/news-in-brief-july-2024.39237/#post-542972

I don’t mean transformation of care or like up coming rulings or systems changes.

I meant little anecdotes from people who’ve found their doctors more sympathetic, more willing to listen or treat them and where their doctors have explicitly referred to their interest arising from the coverage of this case.

I’ve seen a few of these on other sites and on here but I am not able to keep track of them.

So, for me I would post on there that seeing a mother take such good care of her child even after death is inspiring considering most of us don’t experience such unconditional support from family or friends.

Or that having one portion of established England on side is something that gives me hope and is transformative.

 

[Kitty]

Why do you say that?

Only because she can't know. None of us can, not really. There aren't enough recorded case histories of people who are as ill as Maeve for there even to be any statistics.

Sometimes people who're very unwell get into a cascade situation, where a treatment triggers major consequences or a usually mild infection is life threatening. Experienced doctors can use every skill they have and still find it doesn't help.

What everyone can see is that other feeding options could have been tried, much earlier on, to give Maeve a chance. A coroner can't give directions about treatment approaches, but what they can do is highlight that there were systemic failures. Ministers, hospital trusts, doctors can all join the dots.

 

[MrMagoo]

To challenge an inquest you need a judicial review in the High Court. And an experienced specialist lawyer to do it.

 

[Binkie4]

@Kitty
What everyone can see is that other feeding options could have been tried, much earlier on, to give Maeve a chance. A coroner can't give directions about treatment approaches, but what they can do is highlight that there were systemic failures. Ministers, hospital trusts, doctors can all join the dotsi

I still have a niggle that there is an error of fact in th coroner's report. I understood her to say that varied feeding approaches were tried but I only remember one. Other options remained available. It will be interesting to see what the written report says.

 

[Trish]

Could someone who regularly posts threads and therefore knows how to and finds it easy, maybe post a thread titled:

All the good to flow from Maeve Sarah & Sean’s Story

For me?

Members only thread here.

 

[Ash]

Members only thread here.

Thank you kindly

 

[Robert 1973]

Given the hour in San Francisco, I didn't attend the hearing live today. And hopefully we'll all see the text, but from what I've read about it so far this is more or less what I'd expected, given the forum. I don't know the law, but this wasn't a criminal inquiry or a prosecution and she has certain parameters for what she's supposed to find and what evidence she is allowed to consider--for example, if no one has challenged the expertise of an expert. I should re-read what Valerie wrote about inquests--I haven't since she posted it. I'm curious about her thoughts on this.

Sarah is asking on Twitter is there are any ideas regarding the coroner’s findings.
https://twitter.com/user/status/1822135160667578471

Edit - i think I figured out how to add a screenshot. Hopefully.View attachment 22751

@Valerie Eliot Smith I’m just tagging you to bring these 2 posts to your attention.

 

[Ash]

@Valerie Eliot Smith I’m just tagging you to bring these 2 posts to your attention.

I don’t know if I remember this all wrong but did VES write up before all this, that coroner inquest would be unlikely/unable to deliver what’s needed and only legal action would?

 

[Kitty]

I still have a niggle that there is an error of fact in th coroner's report. I understood her to say that varied feeding approaches were tried but I only remember one. Other options remained available. It will be interesting to see what the written report says.

Yes indeed. I suppose they meant liquid foods taken by mouth as well as the NG.

Let's hope she recommends the system is changed to make it more straightforward for other approaches to be tried, so doctors don't base decisions on recommended practice for unrelated conditions, or fear consequences if they act in the absence of specific guidelines.

 

[anniekim]

I know this isn’t what you mean, but an unnatural cause would be being murdered.

What is a disgrace is that the NHS can’t work out how to do what America did for Whitney Dafoe.

i had a friend (U.K.) with severe ME who was peg fed, then TPN and I am also pretty sure she had to be lying flat. So it feels like it can happen in the NHS but it’s not consistent. A big barrier seems to be the insistence tube feeding has to happen with the patient not supine which many people with severe ME cannot tolerate. Guidelines on tube feeding for those with severe ME are desperately needed.

 

[Robert 1973]

I consider Dr Weir as the lead medical specialist in the UK for ME. He was not listened to or Helen Baxter of the 25% Severe ME group.

Dr Weir has a great deal of experience of seeing ME/CFS patients of all severities over many years. He is also well-liked by patients. However, I think there are legitimate concerns about some of his testimony. Unevidenced biomedical claims need to be subjected to the same degree of scrutiny as BPS claims. Challenging BPS theories and practices with unevidenced claims about biomedical mechanisms can be counterproductive.

 

[Kitty]

To challenge an inquest you need a judicial review in the High Court. And an experienced specialist lawyer to do it.

Even if it happened, I wonder if it would achieve more than the inquest and the media coverage. Everyone can see it was a complete clusterfuck, and what that poor young woman and her family had to endure is horrifying.

The fact that the inquest was relatively short and the information coming out wasn't all mind-numbingly technical might have helped with the story's power and impact. Change happens much faster when people understand on a human level that it really has to.

 

[Ash]

Dr Weir has a great deal of experience of seeing ME/CFS patients of all severities over many years. He is also well-liked by patients. However, I think there are legitimate concerns about some of his testimony. Unevidenced biomedical claims need to be subjected to the same degree of scrutiny as BPS claims. Challenging BPS theories and practices with unevidenced claims about biomedical mechanisms can be counterproductive.

That’s true.

But coroner didn’t seem to challenge the doctors seemingly un-evidenced and certainly catastrophic decision to delay treatments based upon their (presumably BPS) belief that Maeve was quite well enough and not in need of feeding when she first presented to hospital, didn’t give an open verdict and leave room for the possibility of this as a preventable death in part due to hospital failures.

I mean what testing did the hospital do to make sure Maeve wasn’t, as she said, in desperate need of assistance with her nutrition, or already malnourished?

 

[rvallee]

They say her death was inevitable as she couldn’t feed herself and NJ/PEG failed.

They say they couldn’t consider TPN as risk of sepsis.

If death inevitable without TPN, TPN should still be done despite high risk of death from sepsis?

Better some chance of survival than none?

I don’t understand the logic…

Edit: NJ/PEG weren’t tried, error on my part

The contrast with acute COVID is glaring. They tried everything, knowing that the outcome was death anyway. When doing nothing leads to death, there is an obligation to take more serious measures.

Many MDs who testified basically said that they had written her off as dead, that she was going to die regardless of what they did. Which is what should have compelled to go beyond the absence of explicit guidance.

Also it's absurd how the line is that a problem was there were no doctors with experience with ME, but they mostly ignored Dr Weir, who did. So they're painting a false narrative. Yes, there is a systemic, and deliberate, lack of ME experts. But there was one involved, actually more than one if we count Dr Strain. So they're arguing that there were no MDs with experience, even as they literally ignored the advice of such experts, because, and we know this is the case, they don't even believe that ME is a real thing anyway. Although from memory, I'm not sure if Strain advised for it.

This is all so impressive you'd think we're in 1984, rather than 2024. It's not as if anything changed since, other than actually getting worse anyway.

 

[rvallee]

Thinking about it. With the “inevitability” of death part, did the coroner just proclaim that some cases of ME can be “terminal”?

Only as a necessary condition to let everyone off the hook for this specific case. Otherwise it would be up to medical evidence, published academic evidence, and there isn't any.

What a wonderful system, where facts can exist to cancel accountability, but the same facts don't exist outside that context. Facts are not allowed to be considered with us, it's all feels and vibes.

 

[rvallee]

I think since Covid the NHS has just broken down. GPS are dismissive to people with cancer. People are dying at home with advanced stage 4 cancer which has not been picked up and it’s too late for treatment.Lately I feel like we’re on a level playing field now, only because nobody is getting any treatment and everyone is being sent a text with a painkiller prescription without a proper consultation.

It's difficult to degrade services based on generic factors, such as "we don't know if the patient is exaggerating their illness / if this is a functional disorder", without degrading it for everyone. Almost impossible, even.

This is the inevitable outcome of this rotten ideology. It makes all of medicine worse, as a result of trying to make medicine worse for some. Because they do this all on the basis of the most common factors in all medicine: symptoms and their impacts. Which is basically everything but what MDs do. It's like degrading the concrete of a building during construction because you want a specific room to collapse. The whole structure will follow, because the concrete holds the entire thing together.

They never think about that. They don't ever think that the face-eating leopards they're placing everywhere will eat their face one day.