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

Report in the Belfast Telegraph (no paywall)
https://www.belfasttelegraph.co.uk/...ew-she-would-starve-to-death/a2016551848.html

The Independent (no paywall)

https://www.independent.co.uk/news/health/maeve-boothby-oneill-exeter-inquest-b2589697.html

 

My impression is that picking up problem weight loss is not the weak point. The failure comes in getting a strategy in place for coping with it. I am not sure how much more I can say on specifics. I don't have any evidence on which to base actually recommendations. All I can really recommend is some research into feeding logistics.

 

ITVx
Maeve Boothby-O'Neill: Mum fears daughter's ME death could 'too easily' happen to someone else

Maeve Boothby-O'Neill: Mum fears daughter's ME death could 'too easily' happen to someone else | ITV News West Country

 

Thank you - will do.

 

One effect hospital staff may be able to observe for themselves is that simply being there makes things even more intolerable. As soon as they've seen someone going downhill because they can't cope with all the business of being on a ward, they've begun to get it.

It's unlikely to be entirely foreign to them, it's fairly common in elderly patients.

Is it that it's not about causes?

It's the opposite, I guess. Deliberately steering clear of causes, because we don't know and for young people who're starving to death, there isn't time to work it out.

 

https://twitter.com/user/status/1818749485763453306


TPN lying flat for 18 months. J-G tube (PEG-J) lying flat for at least 6 years. They never even tried a nasal tube because they knew it wouldn’t be tolerated.

 

I think Whitney Dafoe also tweeted that it seems if he’d been in the UK he’d certainly have died.

 

In over a year and a half, none of the doctors at the clinical nutrition unit at the hospital that specializes in severe malnourishment where I’m being followed have ever mentioned that lying flat is an issue with a NJ tube. And as I mentioned before the head doctor of this unit (who personally approved and fitted my NJ tube) is part of the education working group of the French Society of Clinical Nutrition and Metabolism, which is affiliated to ESPEN (European Society of Parenteral and Enteral Nutrition).

 

One point I just realised is that if someone is sitting up almost by definition they are at risk from aspiration because any gastric contents reaching the mouth will tend to fall back through the larynx. On the other hand for anyone flat, and particularly in the semi prone position preferred for managing unconscious patients, the gastric contents can pass out of the mouth, with no gravity pulling them back to the larynx.

There was a prominent political scandal n the 1960s during which someone involved died from aspiration of gastric contents while being wheeled sitting up in a chair. A lot of ill people when starting to get back to feeding lie flat and take food in a semi-prone position in small spoonfuls or through a straw. Nobody worries about them. Maeve had probably been doing that for months.

 

correct, there was reference elsewhere to her previously eating mashed up baked potato with added water, spoon fed from a cup by Sarah, then later being fed by syringe

 

There never has been any kind of specialised ME ward in the NHS

 

I thought about the recovery position yesterday—more about even minor regurgitation being visible to anyone observing—but thought I might be talking rubbish again.

But actually, when my friend's elderly mum was considered at risk of aspirating saliva after surgery, the nurses always lowered the bed so she was lying flat if her meds made her fall asleep. It does seem an odd contradiction.

 

He seemed to think there was at Bristol, and Leeds where he sent the patient who later died.
But the original question was about why didn’t he ever transfer Maeve to that ward he talked about, which is what I replied to.

 

Unspeakable cruelty. Dehydration is such a terrible experience and a horrific way to die. I think of The Liverpool Pathway from our twisted healthcare professionals.

I can’t imagine the bravery it would take Sarah to live through and witness such horrors as watching her daughter die this way experience such violence from the system and then publicly speak about it all.

 

wasnt there Dr Findlay's ward in Romford? A relative of a friend went there, and was helped, this would be 20yrs ago, ish.

 

I believe the Leeds unit was/is FND oriented?? 'multidisciplinary blah blah' wasnt it? seem to remember reading a couple of patient accounts of it & thinking 'hope i dont end up there'! (since its roughly my area/not that far from me)

 

Blackburn also said that he believed that the Leeds unit had closed - without going back to my notes, from memory, I think he said that although it still had a website available online he had checked and thought that they were actually no longer admitting patients.

 

https://twitter.com/user/status/1818577520054485122


Reading about Maeve's inquest in the UK makes one thing very clear to me. If I lived in the Uk I would have been killed in an NHS hospital 11 years ago when my stomach shut down and stopped accepting food.

#MaeveInquest @NHS @NHSuk

#EndMECFSmalpractice #MECFS #LongCovid

 

There was also Burrswood Hospital but that was not NHS and stopped admiting people with ME.

I don't know if Dr Worthley or Dr Findlay ever had experience of people needing feeding?

https://meassociation.org.uk/2017/0...seeing-mecfs-patients-again-23-february-2017/