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

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.

 

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.

 

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

 

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.

 

Thank you kindly

 

@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?

 

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.

 

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.

 

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.

 

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.

 

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?

 

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.

 

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.

 

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.

 

Tweet reads:
A painful irony: The inquest hearing on the death of Maeve Boothby O’Neill took place during Home Artificial Nutrition awareness week, which runs from 5-11 August: https://pinnt.com/HAN-Week-2024.aspx Improved awareness much needed More info:
@PINNTCharity
#HANweek #SevereME #MEcfs #CFS

 

For anyone who would like to read them:

Media coverage - with the exception of the execrable Alastair Miller in the Observer - has been excellent throughout. I also hadn't realised that Andrew Gwynne (new Labour Public Health minister) had suffered from Long COVID; perhaps he will take things rather more seriously.

ETA: The first image was truncated; now fixed.

 

Important and relevant points from Kitty, I think.

The Coroner’s response to the ‘complete clusterfuck’ may not be as full or clear cut as we would like it to be, but the focus has changed somewhat from just blaming the patient to looking at systemic NHS shortfalls in knowledge and resource provision to care for and protect severe ME/CFS patients from unnecessary suffering. Stage 2 of this process at the end of September will help flush out the seriousness of the intent behind this apparent changed focus.

History unfortunately tells us that very few of those behind a ‘clusterfuck’ are ever really held to account. The focus is almost always about moving on in someway. It would,I think, be a major win just to get ME/CFS taken seriously by the NHS as a disease with very serious consequences for patients which require very careful and compassionate management, which the BPS psychological view of ME/CFS would appear to frustrate.

 

They had to say the M.E. Killed her, yes it did. Face solemn voice low, it’s the kind of “real” (well maybe like anorexia yes but I couldn’t comment) illness that can kill.

Because a killer is evidently on the loose, and they’re all in the frame, M.E is all of a sudden a terminal illness.