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

Dr Strain replying to tweets - I actually think it’s “bad form” for him to be discussing Maeve on twitter whilst the inquest is ongoing.
I get that he wants to protect his own reputation, and ppl are @ing him but he’s crossed a line for me by saying she wanted this or that.

 

“She didn’t want to exist like that/there’s no cure” etc these medics keep rolling out

Maeve wanted nutrition in March, April, May, June, July, August and early September. She wanted to live. They didn’t get it together to provide TPN until the end of September by which time she’d spent 6 months being messed around by them, so she preferred to refuse TPN and die at home. It wasn’t her “choice” all the way through to die.

 

The coroner is not really tipping her hand that much as to what she is or is not thinking. The family is aware of the comment, however. My own interpretation of that remark in context was not that he was saying it would medicalize her as opposed to psychologizing her--in other words, I don't think he was necessarily suggesting the kind of stimulus challenge based on the GET theory. It seemed like he was mainly saying that it would medicalize her in the sense that it might leave her permanently unable to digest normally because various muscles would atrophy permanently. I could be wrong, but that's how I took it.

 

I am pretty certain that 'medicalise' in this context means to give credence to biomedical explanations and management approaches for an illness. That is the only UK medical usage I am aware of in this context.

 

I am left wondering what happened to PEG feeding?
We are given reasons for not using TPN IV lines - infection.
I am not aware of an equivalent risk of septicaemia for PEG.
What can the experts here advise on this?

 

I think that the Coroner will be looking very hard at this issue with a view to identifying whether there are any missed opportunities for providing Maeve with the nutrition she wanted and needed to keep her alive; and if so the reasons which contributed to those opportunities being missed and what actions might be needed to address such omissions in future.

I am too far away from these proceedings to have access to all the information before the Coroner, but it is interesting to note the evidence she has asked witnesses to read out from the written record and the direction of her own questions.

 

That could be. I understand that meaning and it could be what he meant. But it didn't sound like that to me in the context. It sounded like an inartful way of saying that she wouldn't be able to digest normally afterward. ADD: Perhaps it was ambiguous and he meant both at the same time.

 

Hopefully everyone else would realise that if that was the case it was just bullshit.

 

Might be good to quote from the RCP guideline as it contrasts with what the doctors have done. The guideline gives the following case example (page 71):

So, regardless of the cause and medical condition, they should have stabilised or increased BMI to a safe level using clinically assisted nutrition and hydration, going from NG-tube, NJ-tube, PEG to PEJ or laparascopic jejunostomy. Parenteral nutrition should be avoided but is not out of the question if other options fail.

From all these treatment options, it seems that they only tried a NG-tube which was poorly tolerated?

 

Did the meeting get shut down for everyone? I'm locked out of Teams now and can't hear much in the actual courtroom. Is it just. me?

 

Dr Julia Praag says she recognises ME is a physical illness

 

There’s a lot of technical difficulties, people leaving cameras on, sound issues and people being thrown off the feed apparently

 

Ok, but are most people still on and this is only happening to some? And has anyone figured out how to get back in?

 

I’m just summarising what I see on twitter. Apparently 155 were in, now it’s just 105 after resuming?

 

Ok, but has anyone successfully gotten back in who is reading this thread? It would really be helpful for someone to respond.

 

Dr Praag’s evidence seems really key, hopefully we’ll get a write up later. I’m signing off for a bit.

 

Exactly. that's why I'm incredibly frustrated. Does anyone on here have any idea what has happened and how to get back in after being locked out for some reason? I can't move around because the coroner sees everything and doesn't want us to move around. It would be very, very helpful if someone would at least respond to me here so I can figure out if there is something I can do.

 

I wonder if there is any evidence of this... Did not see this mentioned as a risk or complication in PEG reviews or long-term follow ups of PEG(-J) placement.

For example:
https://www.thieme-connect.com/products/ejournals/html/10.1055/s-0034-1392806
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9833457/

Is there an expert present at the inquest who can point out errors in the argumentation of the doctors being questioned? Explanations like these sound plausible but may not be evidence-based.

 

It's not clear to me whether the coroner will be vetting all the medical information, or how she will be vetting it. Obviosuly she has asked about some differences of opinion but not all. Are you in the meeting at the moment? Any idea if there's a technical fix to being locked out?

 

No sorry, hope somebody else is able to help.