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

Kitty said:
I don't know whether it's possible to make recommendations like that in your paper, @Jonathan Edwards?
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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
The mother of a Devon woman who suffered from ME says she believes the events leading to her daughter's death could "too easily" happen to someone else.

Maeve Boothby-O'Neill died at her home in October 2021, aged 27. The daughter of Times journalist Sean O’Neill, had myalgic encephalomyelitis (ME).

Also called chronic fatigue syndrome, ME is a long-term condition that can affect different parts of the body. According to NHS England its cause is unknown, but the most common symptom is extreme tiredness.

Maeve's mother, Sarah Boothby, gave evidence at an inquest into her death on Thursday 1 August. It follows evidence from doctors who saw Maeve in the months before she died.

On Wednesday 31 July, Dr Thomas Fox told the inquest he'd never seen an ME patient with such severe symptoms as Maeve.

Ms Boothby said: "I’m hoping the inquest will explain how she died. She wasn’t expected to die, didn’t want to die.

"Death from ME is extremely rare - malnutrition is common. I believe she died from malnutrition and dehydration. I believe her death was premature and highly preventable.
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Maeve Boothby-O'Neill: Mum fears daughter's ME death could 'too easily' happen to someone else | ITV News West Country
 
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Kitty said:
I don't imagine it'd be easy to convince people who're already fixed in their thinking, but it's more likely to work than making stuff up.
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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.

duncan said:
Why do I get the impression we are not talking about the same thing?
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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.
 
Amw66 said:
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.
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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.
 
Jonathan Edwards said:
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.
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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
 
MrMagoo said:
Just to say, there isn’t a CFS ward. There used to be one a long time ago, which is what he was referring to. He was basically saying we need that type of ward.

The UK does not have any ME/CFS wards or beds, anywhere, at all. Any NHS ME/CFS clinic is an outpatient clinic, and most don’t treat severe/very severe ME, only mild and moderate.
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There never has been any kind of specialised ME ward in the NHS
 
Jonathan Edwards said:
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.
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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.
 
Sly Saint said:
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
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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.
 
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MrMagoo said:
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.
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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)
 
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