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

Another observation from Roy's testimony yesterday: when mentioning that Maeve could not tolerate the feed that they have tried her with through an NG, he suggested that was probably because of "visceral hypersensitivity".

I picked up on that immediately as the term's usually used in the context of (supposed) FGIDs. Again, goes to their assumptions.

 

It sounds too close to the reasons given to PWME who are bedbound or want to use an aid like a wheelchair.

I was denied a NHS wheelchair as I was told that if I used one my muscles would atrophy and I would lose the ability to walk the small amount as an example.

People with ME who are bedbound or sofa bound are told that unless we move we will lose our muscle power and become reconditioned. I am still told this regularly.

 

Media coverage of today's testimony. They only seem to discuss Patel's testimony, rather than the more problematic testimony of Prague; perhaps we will see other stories about that?

https://www.belfasttelegraph.co.uk/...fferer-to-remain-in-hospital/a1468930141.html

https://www.devonlive.com/news/devon-news/exeter-doctor-asked-sufferer-remain-9440653

https://www.dailymail.co.uk/news/ar...aded-woman-hospital-died-debilitating-me.html

 

Graded eating therapy was what Dr P was thinking and proposed.

They will never get it as they refuse to listen.

Terrifying for those who try and try to explain and it just bounces right off. Sad.

 

Wildly inaccurate article in Pulse.

Not my impression at all of the press articles.

Seems overly defensive.

 

This is hooking onto the current view that the media / public are ‘going after’ GPs, and the impending collective action which was until very recently going to involve stopping using advice and guidance (and instead simply referring) and stopping using referral forms (and instead just writing their own letters), these actions have been taken off the menu, but show the general mood towards secondary care eta: and ICBs, and NHSE)

 

Likely because of deadlines.

 

I think this is a really important point. Dr Weir has seen more very severe patients since the GET was pushed

 

Ah - I wondered if some of the journalists hadn't been able to get back in; there was a disconnection part-way through; after I rejoined, the session was locked about 30 seconds later - I had expected them to wait for 5 or 10 minutes to ensure everyone could rejoin.

 

@dave30th did you manage to get back in in the end? Sorry you and others were locked out. Thank you so much for covering Maeve’s inquest and for your unwavering dedication to the community!

 

I’m hoping next week we find out why the NG wasn’t even attempted until July

I read a report I think it quoted Dr Patel saying about the patient making “irrational choices” I think in the context of wanting to go home. They’re not irrational if you have ME, doc.

 

It's Sat morning here so I'm responding to comments that go back a few pages.

Absolutely "medicalise" is only ever used in the way Jo describes. To validate and re-inforce that there's a medical (ie biological) problem when (we are convinced) there isn't one. The thinking being that this will be a positive feedback loop that perpetuates the patient's delusion/functional disorder. I have no doubt this can happen, but it's vastly overplayed to include nearly everything that medicine doesn't yet understand the biology of. Starting to change only very recently, non-cardiac chest pain (esp in women) fitted into this category, "helped" by the inevitable and quite understandable anxiety you would observe with the presentation.

A related concept is the risk of "becoming institutionalised" / "institutionalisation".

You do see infections around the stoma very occasionally, but it's pretty rare. I can't recall a case of sepsis. Wait — I do recall one PEG replacement that went wrong resulting in peritonitis and death.

But more often it's excoriated skin if there's a leak of gastric fluid around the PEG. Sometimes the skin breakdown could open the stoma wider and then the retention balloon can't hold the seal and everything get's worse. The surgeons would then do something like remove the device and allow the stoma to heal and then re-position. I can only think of one example from years ago but not the details. Alternative feeding pathway would then be temporary NGT/NJT or possibly direct jejunostomy. I can't recall if temporary TPN might have been used in this sort of situation, but I'm confident my gastro and surgical colleagues would have no issue moving to that if required.

Just as a side note: in intractable intestinal failure from some rare early life causes, TPN is maintained until central venous access is exhausted. And I've seen our surgeons be very creative in the late stages. This means that if the patient then becomes a candidate for en-bloc intestinal/liver/pancreas transplant there is very little vascular access. I make this point to highlight the differences in approach, where the "never give up, never surrender" model contrasts so starkly with what we're seeing in the inquest. Many of these childhood conditions would also be characterised as complex. I should also note that the psychological effects on child and family are hugely consequential - it's just that no-one thinks that's what started it all off.

Yeah the idea that GET caused more severe presentations is a good one. I hadn't thought of this. I don't think it's a requirement though, eg I didn't see reference to Physics Girl doing GET before she became severe. However there's possibly an element of self-GETing that may even be a bigger factor. Going to the gym as a general activity that "most" people did is new phenomenon, starting in the 80s and picking up through the 90s to be very common today.

Proving it? As commented above I doubt we could or should do trials. But I suspect this answer will become very clear once metabolic, muscle, vascular mechanisms are elucidated: eg. Hanson, Wüst.

 

Message from Sean O’Neill on Xitter:

“End of week one of Maeve’s inquest. It has been a time for learning and sadness as well as questioning. I feel it’s time to bury the anger and remember the woman, daughter, sister, cousin, niece, writer, linguist, feminist and much more. ‘Rest in the sounding of the heart.’”​

I will share this on the members only thread too.

 

Reports on day 5:

BBC:
https://www.bbc.com/news/articles/c51yz0pq1ypo.amp

Daily Telegraph:
https://www.telegraph.co.uk/news/2024/07/26/maeve-boothby-oneill-frightened-no-doctors-help-inquest/

[Edit: non-paywall copy of DT article (provided by @MrMagoo below): https://archive.is/fV7Pn]

The BBC report is dreadful, with all the focus on the fact that Maeve asked to be discharged against the Dr Patel’s advice, with none of the context.

DT article seems to be very good (although hard for me to judge accuracy when I wasn’t there). I’m surprised and pleased the the DT coverage has been so good all week.

 

That wasn't really the issue that caused the lock out, and apologies if I gave that impression on Xitter.
What I think happened was that on three occasions in the afternoon, attendees accidentally pressed the "Mute All" button, which resulted in everyone including CR 4 being muted. Chat was disabled so this was followed by countless "Raised Hands". The Coroner then had to reset audio etc. and it was starting to disrupt the flow of questioning.
Obviously external attendees are purely at her discretion.
The final straw was, I believe, a disconnection at the Exeter end, which booted everyone out as per my Xitter comment which a few of you saw.
She opened the connection, but only allowed a brief period before locking the call, and I have no idea of the reasoning on that, but presumably she just wanted to get on without further interruption.
It was frustrating particularly as Mr. Tuller and a few of those who had been lovely posting quoted couldn't get back in. I was fortunate to be in the remaining 104.

 

Might I take full responsibility for this totally unnceptable misspelling of her surname, on my very first and every subsequent X post of the afternoon

 

Hypothesis that journalists were remote and locked out for Prague session.

 

Finally, is there any journal out there covering the full day including Prague Questioning pease, or do we only have our own notes for that part?

 

Agreed, the Telegraph piece gives Maeve’s voice very clearly.
Non-paywalled here https://archive.is/fV7Pn