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

Yes, I wouldn't disagree. I meant my question in the context of wondering whether she is likely to somehow just think this an innocent isolated tragedy or if she is more likely to issue a Prevention of Future Deaths order, and if so whether that would be targeted high enough to do anything

 

When my daughter (35) was born I was told she had to be on her stomach so she wouldn’t asperate her own spit up. Clearly this was a presumption because my son was born after the change was to put infants on their backs to prevent SIDS. Lots of advice and practice that isn’t based on actual research.

 

I don’t think she can see it as an isolated tragedy as it’s clear the NHS has no services anywhere for SVS ME, and medics, GPs haven’t been trained.

 

I'm a bit confused as to what the... hospital?... I'm not sure who is the investigated party here, is arguing about how the death was not preventable. All their contemporaneous notes reflect their certainty that there was nothing physically wrong with her and there was ample testimony that she did not have an eating disorder, had mental capacity and that her gut was functioning.

What else is there even to contribute to her death, then? The only excuse that may make some bit of sense of all this evidence would be arguing that she basically slowly suicided out of conviction of being ill, even though in their expert opinion she was not actually ill. Which is a despicable excuse to put forward but I can definitely see them argue it.

ME was not the main factor in her death. They were. Their inaction, their refusal to acknowledge the nature of her condition and how it was responsible for her decline. So if they argue that her death was inevitable, but cannot reasonably do a "suicide by belief", then that would mean that left untreated, severe ME can kill in an unpreventable way. Which they obviously don't recognize. They painted themselves in several corners here, probably confident that the system will protect them no matter what, as it's even more guilty than they are.

It's a tough job for the coroner. The NHS caused her death by intransigence over a purely hypothetical model of illness, one espoused all throughout its various institutions and supported at the highest level despite being a miserable failure. Will she have the courage to do the right thing here? So far this system has shown a complete inability to do the right thing, that following orders leading to bad outcomes is always preferable to doing the right thing when it's not authorized bureaucratically.

The complete lack of contrition or responsibility here 100% says that this is standard operating procedure, that it will happen again, by choice. None of the people responsible have, by their own admission, even read a single thing about ME since. Anything below negligent manslaughter would be injustice, but if there's one thing that does hold up perfectly when it comes to us: justice is always denied.

 

I think the hospital’s view is they did everything they were able to then she discharged herself against medical advice.

We know exactly how this has happened and the historical BPS cancer in the NHS and Government. But that’s not for the Coroner, what’s for the coroner is how did Maeve die.

Sorry just to say I can feel my “devil’s advicate” side coming out, I have a background related to law.
I can’t articulate very well the sense I’m getting, but I’m feeling like we’re going to be disappointed if we’re expecting a full-on explosive decision. I think it will be a helpful decision but “moderate”. I think it will be ok, I don’t think it will be as great a decision as we want/hope.

 

My question is - at what point do we (patient orgs) start calling for a public inquiry into NHS treatment of ME patients? Obviously there needs to be one yesterday. But perhaps this is the time?

Or should we keep our powder dry and wait for DecodeME findings or something else that bolsters our argument?

 

Right after the decision is my view.

 

Yes I think you're right. As ghoulish as it sounds this case could have a lot of motivating factor for those making the decisions.

I am so angry at what the NHS did to Maeve, to all of us. We deserve justice. And so does she.

They will not learn until it is embarrassing them and damaging their saintly image every single day. Heads need to roll (metaphorically of course)

 

That I guess can be argued. But it would take a huge suspension of disbelief to buy it. Her decline was over many years, then again into life-threatening over several months. There was also ample testimony about how she declined every time she got to the hospital, how bad it was for her overall condition, mostly because of decisions they made. All because they did not understand or apply basic facts about ME. By choice. It's not as if things were going well there and she just decided that she didn't want to be there anymore, which is the only way this pathetic excuse would make sense.

But the idea that she died only because of those last few days/weeks is absurd. Not that I expect absurdity to disqualify a conclusion. This is very much like "she didn't die because we pushed her from a tall building, she died because during the last meter of that fall she was going too fast to survive it". But given how absurd everything biopsychosocial is, it sure fits with their stupid models.

 

Could we have a thread for that, in that case?

I feel that constant media coverage of past wrongs like there has been with this inquest but on a bigger scale might be a way to force righting of present wrongs.

And I agree BPS is a danger, but their arguments don't hold any water when shown the light of day, as we saw with PACE.

 

Yeah I agree, besides it’s not a past wrong as long as Maeve remains dead and her parents live without the acknowledgement that she was killed.

 

Maybe one effective strategy might to call for research for which a reasonable case can be made and which is do-able without a need to spend years fundraising and laying the groundwork.

One approach would be trialling different feeding methods, with whatever nursing resources are needed.

Another is whether judicious use of benzodiazepines could help people with very severe ME navigate necessary procedures like tube placement. Does it make it less intolerable, does it lead to better outcomes, does it add further complications? Might short term, lowest dose medication make the first week more tolerable until the gut begins to adapt?

[Minor edits]

 

You're right, that sort of research is necessary and could save lives. But it is the absolute bare minmum we should be asking for.

 

We also need to stop people receiving the awful advice and medical neglect that is a factor in so many people becoming severe and very severe.

Currently we have a system that is in open rebellion against NICE and is giving people dangerous advice that they as clincians have had plenty of warning is harmful to patients.

And obviously we need far more biomedical funding into causes and potential treatments, at a scale comparable to MS or similar. But thats probably getting off topic and stating the bleeding obvious.

 

Guardian
GP who treated woman with severe ME tells inquest more funding is needed

GP who treated woman with severe ME tells inquest more funding is needed (msn.com)

 

I guess she’s been warned of consequences for bringing the NHS into disrepute, by expressing to Maeve’s mother what she herself thought of her colleagues treatment of Maeve.

Or maybe she was just more raw in her assessment than she felt comfortable with due to the horror of watching Maeve die this way. Also come on you’d hope she hadn’t been unlucky enough to witness worse treatment of patients… Unless she’d seen it lots of times and that would actually make the NHS look far far worse.

 

Some coverage in the Guardian ("GP who treated woman with severe ME tells inquest more funding is needed"):
https://www.theguardian.com/society...-me-inquest-more-funding-maeve-boothby-oneill

and in the Telegraph ("NHS staff treating woman with ME ‘didn’t understand condition’, says doctor"):
https://www.telegraph.co.uk/news/20...ating-woman-chronic-fatigue-didnt-understand/

and in the Times ("Doctors didn’t accept ME was a medical condition, inquest told"):
https://www.thetimes.com/uk/law/art...as-a-medical-condition-inquest-told-x028vsn5d

 

Absolutely. I guess what I'm driving at is avoiding confrontation.

Saying instead that there are constructive things you could do now, using your knowledge and experience. It would need a basic research framework, for you to talk to other doctors, for you to listen to and note what patients are saying. None of that's impossible, and it could save a young person's life.

 

They have been trained, it's just they've been taught that ME patients are whiny somatizers with s*** life syndrome. Changing doctors' beliefs about ME is such a huge task that I believe it would be easier if we start fresh with a new diagnosis rather than fix the corrupt definition of ME.