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

tornandfrayed said:
Too stupid at the moment to post the link, but there is an absolutely beautiful piece on #ThereforME by Maeve's best friend.
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The preventable death of Maeve Boothby O’Neill
A lament for Maeve from a friend who loved her

KAREN HARGRAVE
OCT 15, 2024

Today’s post is from Bethan Knight. Bethan lost her best friend Maeve Boothby-O’Neill to ME in 2021, a death that shouldn’t have happened. Maeve was an exemplary human being who changed Bethan’s life. Bethan is a writer and essayist, aiming to be a better disability ally, and honouring Maeve’s memory in grief.

Warning: this post contains upsetting content, including the death of someone with Very Severe ME. It’s OK to sit this one out if it feels too close to home.
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more at link

https://www.thereforme.uk/p/the-preventable-death-of-maeve-boothby
 
Thanks for posting that Times article and the nonpaywalled link.

Sean O'Neill said:
A third statement arrives from Dr Anthony Hemsley, medical director of the Royal Devon and Exeter Hospital. He is pushing for change and has reformed the way things are done at his hospital because of “this very sad case”.

He writes, “It remains the case that the Trust is not commissioned, whether by NHS England or the regional ICB (NHS Devon integrated care board), to provide a specialist chronic fatigue syndrome (CFS)/ME service for patients with severe/very severe ME. As such, there is no named individual within the CFS/ME service who is assigned the role of managing/co-ordinating the care of patients with severe or very severe ME. This, as far as I am aware, is the position nationally across the country.”
[...]
Hemsley gives evidence and is impressive. He has instigated changes locally which should improve care — they have seven patients on their books, all being treated at home with wraparound community care and bespoke plans if admission to hospital is required.
He has pushed at regional and national level for the development of a specialist service for severe ME patients, but has clearly been thwarted. His own trust is in financial dire straits and he believes that this is something that demands a national response.
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Do we now think that that might be the safest hospital for severe PwME to be treated? On the grounds that they're the ones now trying hardest?
 
Sasha said:
Do we now think that that might be the safest hospital for severe PwME to be treated? On the grounds that they're the ones now trying hardest?
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As far as I know Hemsley has not provided anyone else with information about what he doing, or what the financial arrangements are. If other trusts cannot refer then it is not much help. It sounds as if at least the Hospital has some idea of what people with ME/CFS are, and might need, but I don't know more. Sonya didn't seem to have any information.
 
Jonathan Edwards said:
Very moving story.
And I see nothing happening and no way for it to happen.
But just maybe the penny will drop with all this.
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We are 'fighting' hard here in East Anglia....
Watch this space Jo......
Might be on touch soon.. ...
Favours may be needed, invites issued for expert opinion on what we are negotiating...
Never say never.....
Have to counter abandonment of understood ICS governance and process and get back on track from the summer hiccup.
Still time...
 
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Suffolkres said:
We are 'fighting' hard here in East Anglia....
Watch this space Jo......
Might be on touch soon.. ...
Favours may be needed, invites issued for expert opinion on what we are negotiating...
Never say never.....
Have to counter abandonment of understood ICS governance and process and get back on track from the summer hiccup.
Still time...
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Might need to pull some influently strings?

Would be good to some important offers of 'networking' in place?

I need to type up Dr Adrian Hemsely's 20 important identified wish/ to does from theReg 28 report Friday 7th October 2024.
A good man....
 
The legal aid fund rejecting aid on the basis that there is no systemic failing and no public interest would be too ham-fisted even for most legal drama. It belongs more in a bad Western drama where the accused is the sheriff and the judge and all his buddies make up the jury. Especially considering how most of that public interest, hundreds of thousands strong, is subject to the same systemic failure, and that the systemic failure was explicitly exposed, hence the prevention of future deaths.

Shame on them, the idea that those organizations are benevolent and follow higher principles is laughable. In the end only power really matters, and power is systematically stacked against us.
 
Wow. I’ve said before, there is a legal recourse somewhere in this case, and I suspect it would require lots of money (crowdjustice funiding perhaps) and a very specialised lawyer, but I personally would support Sarah if she found a way forward.
Although I’m not wealthy so that’s no great shakes.

edit spelling
 
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There still sseems to be considerable uncertainty as to what actually led to what decisions, judging from Sarah Boothby's tweets. I agree it is wrong that more information has not been gathered and that a full enquiry into the sequence of events is needed. It may be that the mental health team was asked to assess capacity and judge it was present, but that would not have prevented care if the official guidelines were followed. If it was judged that there were mental health problems that is a different issue.

I worry about the term palliative care since this was not a matter of palliative care but of providing ongoing medical support for someone who could have lived many years. But maybe this was at a stage when a decision not to provide life support had been taken - however that could have come about.
 
Jonathan Edwards said:
There still sseems to be considerable uncertainty as to what actually led to what decisions, judging from Sarah Boothby's tweets. I agree it is wrong that more information has not been gathered and that a full enquiry into the sequence of events is needed. It may be that the mental health team was asked to assess capacity and judge it was present, but that would not have prevented care if the official guidelines were followed. If it was judged that there were mental health problems that is a different issue.

I worry about the term palliative care since this was not a matter of palliative care but of providing ongoing medical support for someone who could have lived many years. But maybe this was at a stage when a decision not to provide life support had been taken - however that could have come about.
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I can't remember which article or interview etc it was from but I remember Sarah makiing the point that one thing she was particularly referring to when she talked of Palliative care was that Maeve didn't have anyone to talk to about her impending death - that apparently having someone who offers that ear/expertise/comfort is part of that package, and left her in a position that was awful because she knew her mum was having to watch her and you can't talk to someone who loves you on those things etc.
 
bobbler said:
I can't remember which article or interview etc it was from but I remember Sarah makiing the point that one thing she was particularly referring to when she talked of Palliative care was that Maeve didn't have anyone to talk to about her impending death - that apparently having someone who offers that ear/expertise/comfort is part of that package, and left her in a position that was awful because she knew her mum was having to watch her and you can't talk to someone who loves you on those things etc.
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If I have that correct then I don't know how to square it (or discuss it on here given the sparse info) with the ambiguous terminology and employment of the term 'mental health' for things like FIDI, Munchausen's, for declaring someone 'functional' vs 'sectioning' (and then they can treat them as they want? - as long as the section says 'for this definition of the condition'? or does somehow that just say 'will feed with TPN'?)

vs if it did lead to blocking of providing someone to talk to as they are dying - which would be the primary 'universal offering' for that supposed broad but not labelling idea of 'mental health' without someone having to have 'issues'.

It's a real problem area as potentially it seems there are low bars of just put a question mark anyway because we all don't fully understand the term as it has been made broad and ambiguous, and that sales pitch of 'good intentions, it's about helping' and it really getting used in a way that operate in the opposite.

I don't really believe that the powers and laws - the properly hopefully debated and critiqued aspects that are why it is supposed to exist - in relation to this area were developed for these purposes at all, but seem to be having pretty serious impacts and blocks even when used 'casually' or indeed for these illnesses conditions or people to be dragged under them unofficially and via insinuation (rather than proper diagnosis) - I don't know what the term is for over time this having been used to 'steal' and proliferate powers it was never intended to offer.

I don't think that there is some implicit intention in law that there is some spectrum where if you don't meet the high bar of section or official diagnosis of a certain severity of a specific mental health condition there is some 'scale' that someone suggesting maybe a bit of this informal thing, maybe a bit upset, ooh we can never b 100% etc means that you can block or use a bit or all of similar processes as if these official things were present. And yet I'm smelling there is a bit of that operating. When things are put on it's as if there is no implication 'so might as well' (because its not official), but they turn out to be very much used in a different way once there (can't act as if it's not there whilst it is still a question mark).

And the question mark seems to mean that the same apparently bullet-proof process supposedly meaning 'you wouldn't end up with this unless you really were ill' (ie the justification making it somehow acceptable because it is regulated) doesn't have to happen but the same delays, excuses and closed doors do.

When you think people might be forced to accept a section that wasn't needed re: mental health to receive life-preserving care for a physical condition and these impacts on top then it is all very muddling

I think I'd go so far as to say that things that are inappropriate to what these powers implicit in that area that is supposed to be narrowed to only a very defined situation and group of conditions have been expanded beyond - is the term 'their license'?

Is it for all physical, biomedical health conditions or is it just 'certain ones' would be my question and of course it feels so unofficial and I'd expect data hidden under privacy etc we aren't going to get it. But we do need to know if the expansion of some people's push that certain conditions 'might have a psychological component' (without proving that at all, and certainly not proving anything that is in line with mental health law eg capacity or harm) for example is 'skirting' provisions that they are supposed to operate under/be responsible for. Perhaps merely by using the same terms (even if intended to be using a 'different meaning' within that - I mean counselling someone facing death is in itself 'mental health' under that term isn't it, but wouldn't and shouldn't put someone under restrictions related to that term?). These feel important questions because whether being used informally or formally they are strong powers that aren't licensed to just be used this way, yet the informal implementation removes the protections against people being wrong/of appeal etc. ?
 
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bobbler said:
I can't remember which article or interview etc it was from but I remember Sarah makiing the point that one thing she was particularly referring to when she talked of Palliative care was that Maeve didn't have anyone to talk to about her impending death - that apparently having someone who offers that ear/expertise/comfort is part of that package
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It is. It's often talked about frankly and openly, sometimes with humour if that's what the person needs.

One of the issues explored is whether there are things the person's afraid of experiencing as they get closer to death. Often specialists in end of life care can reassure them, but without that conversation, no one will know if someone's precious waking hours are being spent worrying about something that's very unlikely to happen to them. And of course we imagine stuff about dying, none of us have done it before.
 
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