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



Thanks so much @Robert 1973

"...the coroner finds the situation so serious that she is preparing a section 28 prevention of future deaths report, the delivery plan must include an audit of all health trusts to discover if they are following Nice recommendations for the care of people with severe and very severe ME/CFS, and what they intend to do if they are not."
from Charles S

Spot on Charles and as a bare minimum. How do we press for this and with whom?
 
Thanks so much @Robert 1973

"...the coroner finds the situation so serious that she is preparing a section 28 prevention of future deaths report, the delivery plan must include an audit of all health trusts to discover if they are following Nice recommendations for the care of people with severe and very severe ME/CFS, and what they intend to do if they are not."
from Charles S

Spot on Charles and as a bare minimum. How do we press for this and with whom?
The MEA employed a person on a Fixed Term to look at NICE implementation and liaise with the NHS trusts to get it implemented, so they really know what they’re talking about. The MeA have really been pushing for implementation and I don’t think they’ve got very far.
 
We now seem to have a government working party produced e-learning module painting a picture of carrying on as before with GPs physios and psychologists.
Yep. It is increasingly appears that the BPS club have successfully hijacked and corrupted the reform process in the UK. Evidence also strongly suggests that they are currently trying to pull the same trick here in Australia with our forthcoming guidelines review.

They are utterly shameless and ruthless. They have made it abundantly clear post-NICE that they care only about their empires and incomes and egos, and that patients needs don't count for shit.

They are a fucking disgrace.
 
I wanted to comment on the stat that we’ve heard in the inquest about the hospital seeing around 5 very severe ME cases per year. I’m sure that’s true but it concerns me that people hearing that will conclude that there’s such little demand for specialist services for severe and very severe patients that funding it isn’t a priority. I fear they won’t understand that the stat masks how many severe and very severe pwME nationwide desperately need the same help but feel they are safer not requesting it (I wonder what that number is?)

I’m concerned that it will take years before we can safely ask for the help we need. If Maeve had been able to request informed, unpredjudiced help earlier, would she have starved to death? How many more people will reach the same fate because they need help now but don’t feel it’s safe to ask for it? (Personally, I worry I could be one of them.)

I hope the Section 28 notice can bring some desperately needed progress.
I thought similar when I saw that stat. I don’t know how narrowed down that is too given lots might be misdiagnosed and it certainly seems feeding issues might involve either dumping into a functional box, mental health or sending away. And some might never have come back (gone elsewhere ).

It seemed awfully specific to state that number without confirming where it was from and how it was calculated but certainly seemed to be being used to infer ‘not enough to plan a service’.

which confused me because even two is enough to make sure gastro gets it right with feeding tubes instead of what happened and it seems other conditions just have guidelines rather than their own gastro staff?

and if it’s a specialist service for severe ME then things that stop people deteriorating and other things that might help being tried or other conditions contributing (because we often don’t get treated for those due to bias or not being then able to access care and eg an infection and other ‘small’ issues don’t help) and so on … well then there will be far more than five severe and very severe - I assume that figure is the number needing their ‘first’ tube?
 
The MEA employed a person on a Fixed Term to look at NICE implementation and liaise with the NHS trusts to get it implemented, so they really know what they’re talking about. The MeA have really been pushing for implementation and I don’t think they’ve got very far.
Did that happen? Is one person enough to go up against all that? Of course not so I assume the role was more defined than that in some way? Do we know how long the fixed term was for?
 
Yes.

I feel five is plenty enough. More than I would have expected perhaps. Also if it were fewer than this, it still remains the case that every patient is a person worth caring for. Ethics first.

Strategy second. This is one decent way medicine can evolve and develop skills which will be transferable, other patients will benefit from less noise and light and having their individual needs considered.

Still I do think it can be a problem to look at the numbers of presenting patients in these situations as a way to measure the scale of the situation.

People need family support to get as far as a hospital bed whilst very sick with ME. We don’t know how many people suffer like this without support behind them and are diverted into psychiatric pathways and may suicide before reaching the feeding tube stage.

Or suffer medical prejudices and abuse early on in course of illness, avoid healthcare altogether. May take their own lives when it becomes obvious a physically punishing hospital environment and the psychological trauma of being treated like an unwanted object by the staff you will be utterly dependent upon to stay alive is a growing risk.

We’d all hope for good care. Hospitals and community medical services do give good care sometimes. Yet we often learn to stop expecting the best early on.
Yes basically dying under a different label where it gets called suicide or even death by a different label (if they call it an earring disorder) but really it’s more complex than that and calling it that.

I remember watching I think it was the end of the first episode of the Miriam margolyes being an Australian programme. It had a historical event to do with aboriginal and Torres straight people being on pasture land by coast just going about their lives (can’t remember but chilling basically, not a riot) and an army coming and driving them off the cliff to their deaths. Then that cliff being named ‘suicide point’
 
Did that happen? Is one person enough to go up against all that? Of course not so I assume the role was more defined than that in some way? Do we know how long the fixed term was for?

The MEA was monitoring such as job adverts and information put out from specialist services, contacting the relevant trusts when they identified contradictions with the new NICE guidelines. Presumably this was part of this role.

I think this did help, at least superficially, in that services seemed to get better at least wording material so it did not obviously contradict the new guidelines. However this does not always ensure understanding, rather just creating a new set of euphemisms.
 
I read a story about an Australian TV presenter who died from Motor Neurone Disease recently. She couldn’t digest food and rather than pursue further hospital treatment she decided to take palliative care.

It struck me that there are similarities to Maeve’s situation. The difference is that Maeve wasn’t definitely dying. (Well, and she didn’t get proper palliative care) so it does seem to be a defined disease “pathway” (in other illnesses) that the patient would die anyway, so they can decide to go home and just not eat.

I can’t remember which website I read the story on, but here is the Guardian https://www.theguardian.com/tv-and-...-wombat-host-dies-aged-67-after-mnd-diagnosis
 
We now seem to have a government working party produced e-learning module painting a picture of carrying on as before with GPs physios and psychologists.
I’m remembering the “There is a way” text to Gillian Leng, suggesting she kept the new NICE gl recommendations but tampered with the evidence review. The new way seems to be to ignore the guideline (because it’s only advisory, not mandatory) and carry on as before.
 
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I’m remembering the “There is a way” text to Gillian Leng, suggesting she kept the new NICE gl recommendations but tampered with the evidence review. The new way seems to be to ignore the guideline (because it’s only advisory, not mandatory) and carry on as before.

Also, let's keep BACME at the centre of what we produce, because they're all good chaps, have been doing this for years and we are looking forward.
 
Also, let's keep BACME at the centre of what we produce, because they're all good chaps, have been doing this for years and we are looking forward.
I have a real issue with this

I don’t have the terms right now but don’t know why it isn’t talked about in the scandals terms of the abusive remove all rights deliberately rewrite their history with rumours of their personality take advantage of their fragility abuse of vulnerable people issue that it is. We can’t continue to have the same problem people as before and those who still think a deaf ear [if/as doing it right takes longer so is irritating] is ‘ok’ left to carry on with the same deaf ear approach.

What’s it all been for? The last years? Really the scandal of it all in a right world should have meant a clear out and come to Jesus as a never again and how can we put it right to at least not re trigger by doing insensitive things due to their past harms they did then not having an approach where they are careful again to this time care and make sure they aren’t callous about harm (and so that becomes one of their main measures).

That underlying bit never became the focus even if it would be implicit to every lay person. What is wrong with these professions. It’s like worrying about the spelling whilst writing something legally inaccurate or being poetic whilst churning out another recipe you haven’t checked actually is disgusting when someone at home follows it.

What do they think is the actual main thing of what they do as a job because the word ‘help’ should be banned from what they are allowed to say. And care. And end result not being to make people more disabled than necessary either thru ‘dunnoism’ or denialism if you don't have to actually check for it.

that it has never been countenanced as a discussion that they should apologise, be contrite, and be different in their approach to us makes it even more violating as so many of them have even silenced allowing people to not even talk about what it really was like to be on the receiving end and what consequences it would have but they don't even acknowledge it in ‘positive going forward terms’ in as far as the protections we need and then ‘needing to learn x’ or hear us.

The catastrophisation attacks really felt like I was being abused by the same people who did the harm in the first place, and were terrifying and underlines how inappropriate just keeping plopping the power with them rather than hiring them back on conditions has created as a situation that should never ever happen from a plain justice and safeguarding point of view. And I don't get it, because they don't have 'expertise' to offer, because that all turned out to be harmful tosh so the 'no learning ear' squirrel away and come up with a new nonsense is frankly a disturbing example of the same ignorance and bad habit. They've not heard the lessons, any of them. NO penny-drop

the silencing attitude and people need to be driven out of being anywhere near us - as the group having been made vulnerable and injured by them and therefore even more vulnerable to that coercion and it being a real sitting duck disgusting situation

even objectively I’m horrified the world still puts people back with that attitude even worse and more indignant as if they are the victims of ‘hassle’ created by us daring to ‘show our face as being harmed to show them up’ on top of they shouldn’t be allowed back in the first place and the falling straight back into bullying us into ‘can’t make us not do the same old' (and call it a new name or just a tweaked rebrand) is just gob smacking that they did as a boundary test and watched as no one backed us up.

no I don’t want paternalists who want to shut me and my body up writing who I am and dictating my rights and if I have a future. Who really aren't curious for new scientific information, nevermind getting to the bottom of any medical problems to make our disability less and finding out what they can in the mean time to support and work with us. They just aren't that. That phrase to them in their mind means something completely different (motivating us to do their same one-dimensional, can't get it through their heads you don't get to try it 2,000 times and then it will work in a way they think is individual but is just coercing the person in front of them).

and after all these years of course it’s my time when not only should I be allowed to say it but we, like the post office sub-postmasters, should be the only ones being given an ear - not the smooth spieling self deluded perpetrators, or next-men-down who were convinced of it, who had the mic for all those years - and in these situations the power operates the same. those who are dyed in the wool and have chosen a behavioural niche will never change and can’t even change their MO from attacking with veiled nonsense, which is what all the weaponise fake anti-mental health done by physios with no qualms, regs or any reason to be entitling themselves is being used. I find it all so appalling.

There may be those in the middle who might have it in them to learn but cant whilst this clear out process doesn’t happen because of the power differential and selling of delusions they have to learn off by heart to keep their place.
 
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https://www.thetimes.com/uk/healthc...n-to-prevent-further-deaths-from-me-l7pjrrdg9

Archive link: https://archive.ph/oPH38

The Times online today Mon 7th October, posted 12 noon.
Edited in: new is written in red underneath the familiar photo of Sean and Maeve

"The health secretary and NHS officials must urgently address the “non-existent” care available to ME sufferers and the lack of funding for research into the condition or risk more deaths like that of Maeve Boothby O’Neill, a major report has found.

In a watershed moment, the coroner in Boothby O’Neill’s inquest issued a prevention of future deaths report on Monday, the first of its kind involving the poorly understood condition of myalgic encephalomyelitis.

Deborah Archer, who concluded in the summer that Boothby O’Neill, 27, died of malnutrition as a result of ME, has called on Wes Streeting, NHS officials and other health bodies to take urgent action.


She wrote in a Regulation 28 report: “During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken.”

Boothby O’Neill’s death in October 2021 has become a landmark case highlighting misunderstandings of ME, also known as chronic fatigue syndrome, and the lack of treatment available for severe sufferers."

Edit: Link above "to take urgent action". Link to earlier article on Coroner's inquest on 27 th Sept.

Coroner to call for specialist ME services after Boothby O’Neill death
Maeve Boothby O’Neill’s case highlighted an inability to care for patients who suffer with myalgic encephalomyelitis, or chronic fatigue syndrome.
 
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It may be worth looking at the archive link https://archive.ph/oPH38- thank you @JohnTheJack which seems to have a bit more content including a section it calls
The Times view on the chronic fatigue syndrome inquest: Respect ME

"Sean O’Neill said that that hearing revealed a “shameful” lack of action at senior levels to address ME, given that three years after Boothby O’Neill’s death there were still no beds anywhere in the country set aside for the treatment of a severely ill patient.
Senior officials at the Royal Devon have stressed to NHS bosses the need for action but have been told that there is “no active work” to introduce specialist services.
It comes despite repeated pledges by the government to do more for ME patients. Gwynne, the minister for public health and prevention, said after Archer’s ruling in August that Boothby O’Neill “fell through the cracks” and he pledged to boost research, improve attitudes and “better the lives of people with this debilitating disease”."


Once again the name issue comes up. ME and chronic fatigue syndrome are being used interchangeably. We really need to sort this out.



edit: the article has been revised since I wrote this. Cannot keep up!!
 
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Considerable coverage again:
Telegraph - https://www.telegraph.co.uk/news/20...y-oneill-myalgic-encephalomyelitis-death-nhs/
Mail - https://www.dailymail.co.uk/news/ar...-young-woman-died-debilitating-tragedies.html
BBC Devon - https://www.bbc.com/news/articles/ce81g8e33lro

Quoting from the DM article:
She wrote: 'During the course of the evidence, it became clear that there were no specialist hospitals or hospices, beds, wards or other healthcare provision in England for patients with severe ME.

'This meant that the Royal Devon and Exeter Hospital had no commissioned service to treat Maeve and patients like her.

'During the course of the inquest, it became clear that there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME.

'During the course of the inquest it became clear that there was extremely limited training for doctors on ME and how to treat it - especially in relation to severe ME.

'During the course of the inquest it became clear that the 2021 Nice guidelines on ME did not provide any detailed guidance at all on how severe ME should be managed at home or in the community and in particular whether or not there is any necessary adaptation needed to the 2017 guidance on Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition.'
 
The Department of Health Spokesperson notes:
“We are committed to improving the care and support for all those affected, and we intend to publish a Final Delivery Plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.”

Nothing was decided about boosting research as far as I know. The funding bodies (MRC, NIHR) pretty much kept mum. The attitudes and education aspect we have on another thread. We seem to be going nowhere fast at present.

I also note that the coroner thought the NICE 2021 guideline for severe ME/CFS was not specific enough about feeding support. I don't know where that came from. From what I have seen the general guidance on feeding support for adults is adequate. The problem is that there is a deliberate resistance to supporting those who are not deranged enough to section and don't have structural GI failure. If there is anything else to be said why is nobody saying it - other than maybe me?
 
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