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

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.

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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.
 
Jonathan Edwards said:
What hits me about Sean O'Neill's account is the complicity of the legal profession in denying ordinary people justice. I have a neighbour and friend who is a King's Council (and a Dame). I have texted her to ask for her opinion.
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Your blanket loathing of the legal profession is very disappointing, Jonathan, and it does you no credit.

Getting formal pro bono representation is very, very difficult for a number of reasons (too long for here). The legal profession is currently engaged in a battle for improved access to legal aid for both those seeking and those providing legal services. The current system is in crisis, along with most other public services.

The legal profession would be delighted if legal aid was available universally for "interested persons" at inquests (eg. Sarah and Sean) but that only happens in very limited circumstances. That is not the fault of lawyers who are as critical of this unfair system as anyone (and it doesn't just impact inquests but every other branch of the legal process too).

I know of many lawyers who give freely of their time and expertise for no payment. That has always been the case. However, providing pro bono representation at eg. Maeve's inquest would have been a massive undertaking, given the enormous number of documents and length of the hearings. It is a service which very few suitable lawyers would have felt able to undertake for free alongside their other commitments.

A grossly unfair system? Yes. The "complicity of the legal profession in denying ordinary people justice"? Absolutely not.

ETA: Many people have had bad experiences with lawyers (including me). As with doctors, that does not make them representative of the entire profession.
 
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We disagree, Valerie, I guess. The legal aid issue I see as largely a red herring. The injustice in the inquest goes much deeper than that, as in the Post Office case.

I am very happy to admit that the medical profession is just as bad in certain respects but perhaps not at this level of denying access to what it is one is purporting to be supplying.
 
Jonathan Edwards said:
We disagree, Valerie, I guess. The legal aid issue I see as largely a red herring. The injustice in the inquest goes much deeper than that, as in the Post Office case.

I am very happy to admit that the medical profession is just as bad in certain respects but perhaps not at this level of denying access to what it is one is purporting to be supplying.
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There is a difference between lawyers and the legal system, just as doctors are not synonymous with the health service.
 
Suffolkres said:
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....
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Following up on the current debate about the dire situation of Specialist ME services. I came across this useful document about driving change.

https://nhsproviders.org/resources/...strategies-for-addressing-health-inequalities
 
Valerie Eliot Smith said:
Your blanket loathing of the legal profession is very disappointing, Jonathan, and it does you no credit.

Getting formal pro bono representation is very, very difficult for a number of reasons (too long for here). The legal profession is currently engaged in a battle for improved access to legal aid for both those seeking and those providing legal services. The current system is in crisis, along with most other public services.

The legal profession would be delighted if legal aid was available universally for "interested persons" at inquests (eg. Sarah and Sean) but that only happens in very limited circumstances. That is not the fault of lawyers who are as critical of this unfair system as anyone (and it doesn't just impact inquests but every other branch of the legal process too).

I know of many lawyers who give freely of their time and expertise for no payment. That has always been the case. However, providing pro bono representation at eg. Maeve's inquest would have been a massive undertaking, given the enormous number of documents and length of the hearings. It is a service which very few suitable lawyers would have felt able to undertake for free alongside their other commitments.

A grossly unfair system? Yes. The "complicity of the legal profession in denying ordinary people justice"? Absolutely not.

ETA: Many people have had bad experiences with lawyers (including me). As with doctors, that does not make them representative of the entire profession.
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I agree that the last Government was wishing to cut off Legal Aid, as it was an inconvenience to them delivering their slant or ideology. It was an anti democratic move and endangering both public and lawyers who's work could effectively dry up.

That's how 'Crowdjustice' was born, as an alternative way to establish a fairer crack of the whip and restore democratic balance. I used them on 2016 for an Environmental Juducial Review case.
 
Jonathan Edwards said:
Maybe S4ME should make a formal request to Dr Hemsley to share his protocols with the patient community. (If I asked I might be seen as in competition.)
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If it is a sensible protocol, that therefore has the possibility of saving lives, then it being restricted to one local hospital is obviously less than ideal. However, I would note that we aren't a a patient organisation as most people would recognise, so not sure why this Dr Hemsley would think it would be a good idea to give the details to us. Sounds more like a job for someone from AfME or the MEA - actually, thinking about it shouldn't David Strain be able to acquire it rather easily?
 
Andy said:
not sure why this Dr Hemsley would think it would be a good idea to give the details to us.
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I agree. But I have been having conversations with various people involved in charities and the patient community for nearly a year (including copying in David Strain) and so far have not had any inkling as to what the protocol might be. When I talked with Sonya I didn't;t get the impression she was likely to ask for it. Extended discussion with Charles has not led in that direction. It was suggested that I might be able to rustle up a protocol!

I think part of the problem is that there aren't really any active physicians in the charities. David Strain has been adviser to AfME but seems increasingly to be involved in other things. I assume he was involved in the Exeter developments but I have not been given any information.
 
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