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

That broke me

 

Channel 4 News segment:

https://www.youtube.com/watch?v=10hCNt6ajSE

 

I also think that the inquest may have achieved the one thing it could achieve, which is to bring a case example out into the open in a way that allows everyone to analyse exactly what the critical blocks are. I don't think anyone on the medical side comes out of this very well, except the individual GP. But the GP set up certainly does not. A GP should not be in charge of a long term illness the way they are now expected to be. The RCGP gets no points.

The specific thing that I have learnt is that the gastroenterologists are actively discouraging feeding support for what they term 'functional' cases. Weirdly, they think these functional cases are associated with structural diseases like EDS. They have no idea what they think, in fact. I intend to call this out in a revision of my Qeios article. It may not be very comfortable reading for anyone, but it needs to be said. It would be good if there was some dialogue with these people, but that is up to them.

 

So this is a very odd conclusion. The facts speak of a serious disease, which the doctors misinterpreted as psychological, but is serious enough to cause inevitable death. They kept saying it was inevitable, impossible to prevent. Based on nothing at all. Which means that all the others with severe ME face an explicit risk of death, right now. Which is true. But they can simply lie on the stand about what they think, in a very coached way, and it's all good. No one to blame.

And even though the facts speak of an illness so terrible that it can cause inevitable death... we know it will continue to be treated as psychological. Basically this guarantees that not only will it happen again, it will probably happen more, but likely at home rather than hospitals, since it sends the clear message to people with severe ME to never go to a hospital. I'm not in the UK but I have long adopted the same: I'm only ever going to a hospital feet first as long as I am ill with ME.

In the end systems protect themselves. Even when their primary mission is to protect vulnerable people. Even when they fail miserably at this mission. Power rules everything, and they have it all. Makes a completely mockery of duties of care and candor, but no one believes in them anyway. They're just fluffy words.

Ideological beliefs caused Maeve's death and that of many others, in the past and future. And that ideology has been reaffirmed as standard operating procedure, everyone involved will be protected and defended. I didn't expect any different, but it's still shocking how much blatant disregard for human life it all takes to whitewash this. And no doubt the medical forums will be very gleeful about it, and pick and choose the details they want, knowing that this whitewash happened because they believe that it's psychological, even though the coroner has accepted that lying about it on the stand is OK. Lies like this can't be disproven anyway, so in the end it's down to a moral imperative, and they don't apply to us.

 

Yes I thought that. The explainer one with the whistleblower Clinician commentary about the policy maker generation - linked again below for convenience - is really quite a powerful point. Qudos to anyone who's complained and AfME for a strong quote too.

https://www.theguardian.com/society...s-me-myalgic-encephalomyelitis-nhs-criticised

 

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.

 

The legal definition is a death that isn't caused by a direct intervention, e.g. a surgery. So a death that happens because nothing was done to prevent it.

But that doesn't make it impossible to prevent. In fact it was preventable, but they're eating their cake and having it too.

I have zero confidence that the fact that this whitewash depends on severe ME being an inevitable cause of natural death will be taken into account. It will simply be brushed aside. It will either continue to be said that ME doesn't kill, or that it's extremely rare. And it will pass because those deaths rarely happen at hospitals, even less so now because of this cover-up.

It doesn't change that much, but wow does it say a lot about why there has been zero progress, how this is all 100% a choice.

 

I think this is plain wrong. Guidelines recommend going to NJ if NG is not tolerated. This is common in gastroparesis where the stomach doesn't tolerate the feeding but the gut often does. There are also other options such as PEG-J or Jejunostomy with lower risk of aspiration. And if all that failed or was not possible there was the option of TPN. From what I read/hear, it is possible to live many years on TPN if patients are followed up by an expert team.

Was any expert, a gut-specialist, consulted to check if what Dr. Roy was saying was true or not?

 

No. any quotes from today are the Coroner summarising what was given in evidence during the inquiry.

 

Thanks, I'm concerned that the Coroner is taking Dr. Roy's explanation for the truth, while this should have been treated as the heart of the matter and scrutinised by independent experts.

From reading guidelines on enteral feeding it is very hard to believe that there were no other options and that nothing more could have been done. All they tried was an NG-tube.

 

I’d guess there were protocols backing up what he said, in the evidence bundle. And the absence of any ME specific protocols.

 

The news articles make it sound like the main problem was that there are no ME specialist clinics and that the doctors did not have experience with ME.

From what I picked up from the inquest, the problem was that the doctors had heard of ME and believed that they should not try to medicalise it. I think that explains the strange decision of not exploring artificial feeding options which are recommend by guidelines and used routinely for other health conditions where people aren't left to die of malnutrition.

 

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

 

Could be but doubt it. Would be interested in seeing that protocol if it exists. Even the bad guidelines that we discussed here on S4ME and that do not want to medicalise functional problems are not that bad that they would recommend against trying PEG-J or TPN if there is a clear risk of starvation.

So they did try NJ (from the nose to the gut) and PEG (opening directly through the stomach)? I haven't followed things closely but I thought they only tried a NG tube (from the nose to the stomach).

 

Yes.

 

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

 

Yes.

The rationale for not trying other methods of feeding would have been that they would then have been responsible for causing her pain and suffering which they couldn’t justify because they were so sure that these would fail. She was on her way to death.

 

No, NJ/PEG weren't tried. NJ was considered likely to fail, PEG doesn't seem to have been discussed.

 

Do not want to minimise the risk of sepsis but here's for example what a review on long-term TPN says:

https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12209

EDIT: here are some more quotes from reviews:

https://www.sciencedirect.com/science/article/pii/S0002916523062901

https://jamanetwork.com/journals/jama/article-abstract/188261

 

BBC Spotlight

https://www.youtube.com/watch?v=NjLY_Y_A448