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

Ok, but there must be some truth-finding involved. You can't just take someone's word for it if they say they did not screw up and did everything right.

From summaries that people tweeted, it seems that the Coroner is saying that the death was of natural cause, that nothing more could have been done to prevent it, that a NJ tube would not have helped if a NG tube was not tolerated, etc. What exactly are those statements based on if no independent experts were consulted?

 

Regarding aspiration (food content inhaled into the respiratory tract): the risk was highest for a NG-tube which they did try. So how can it be an argument to not try NJ or PEG-J where the risk is lower than with a NG?

 

A good point.

 

When Dr's talk about palliative care they often use the term 'over medicalise' to refer to a situation when somebody is dying and they end up being aggressively medicated and being in a hospital when they don't want or need to be, when they would rather be at home and not be on so many drugs (I note that Meave was asking for intervention).

Perhaps it is possible that the above was what they meant when they said 'medicalise' ...or perhaps it isn't what they meant, but the coroner and others will interpret those notes in that was, therefore missing a sign that the consultants didn't believe ME was a physical illness.

If they did mean it in the same way as the term/sentiment is used in other palliative settings, would that still mean they had a different opinion on what Meave needed (as opposed to Meave's opinion on what she needed, and what she was asking for).

 

A very very important point, @MSEsperanza.

 

No one should die of malnourishment and starvation in any land or country at all.

But all the rest of it yes @lunarainbows. This was preventable. There is ample evidence of this plain fact. The coroner could have reached a different conclusion.

What Maeve’s parents were trying to avoid was asking questions that might be allowed to hit one doctor or other HCP which could allow the hospital the healthcare commissioners the NHS and the medical culture off the hook. So they carefully targeting the system as a whole.

Systems protect themselves coroners are of the establishment and tend to back it even while pointing to specific failures within it. Through constraints that the process puts on them, which favour the establishment, of course, and through their framework for viewing the world based on establishment values.

The victim & family have no legal representation. The institutional parties questioned over their involvement in the death have. They also have institutional knowledge of the process. The bar for pointing out failure is set very high indeed.

The bereaved individuals are at multiple disadvantages.


However coroners can and do find institutional failures and point out systemic issues. So this may have been expected by many, given our history of poor treatment within and by the state, but it wasn’t inevitable.

A different coroner would have come to different conclusions, might have been even worse, could have been much more humane.

 

The forum has a standing request that

 

Yeah.

As everyone keeps saying she isn’t a medical professional but a lawyer, I guess maybe she did ask but, just asked only people in medicine of a similar level of ignorance and intransigence and shruggyness as the hospital lot?


Wouldn’t surprise me if the NHS has a ‘too far on let them die’ policy across the board for patients with chronic illnesses who might need longer term feeding as compared to those with acute illnesses who still have a high chance of being killed by the system but who are at least theoretically considered worth making every effort to save.

 

Yeah I don’t think so. Maeve wasn’t dying when she went into hospital.

Over medicalisation has been taken on as a regular thing to say about anyone with a chronic illness that the system declines to investigate or treat.

If the coroner didn’t know that ‘over medication’ is both a matter of practical possibility in medical settings and end of life situations, and a matter of healthcare politics and medical prejudice, she certainly should have. Not least because we’re a long way into the public argument that long COVID shouldn’t be ‘over medicalised’ and those people living with it we are told aren’t dying just a wee bit anxious, and therefore over focusing on symptoms.

 

‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions

https://www.theguardian.com/society/article/2024/aug/10/me-patients-maeve-boothby-o-neill-inquest

Think that is a more a review article of the inquest and background than anything else.

 

Hey everyone; I’m let’s say very dissatisfied by this outcome, of non preventable death. I’m not moving on and letting it go any time soon.

But there have been some really good things to happen out of this see above posts sprinkled through!

Could someone who regularly posts threads and therefore knows how to and finds it easy, maybe post a thread titled:

All the good to flow from Maeve Sarah & Sean’s Story

For me?

Then we can link to all the good stuff so far in the main threads and refuge there and feel inspired when it feels too heavy and too much?

Because as it is for people who can’t read much there is a lot of pain to get through, naturally given subject matter, before finding the gains made through this process.

 

No of course, not if they call it that.

What I mean is following the line of avoiding ‘unnecessary investigations’ is something on many a Cons letter for people with ME LC FM etc see also ‘counterproductive treatment’
these are real problems in healthcare, but they are being disingenuously applied all over as rationing tools.

I am sure there is guidance to not put people on feed that it will be difficult to get them off, advice that it’s dangerous for people to be on artificial feeding. Completely true. But what if they’re simply sidestepping the danger of not doing such procedures?


What if the guidance isn’t applied evenly across all patients groups or conditions?

 

Page 5 of the hard copy of the Times today is totally about Maeve, with a link to a leading article on page 23.

There is an article by Sean " What I know after painfully reliving my daughter's decline" - the NHS must ensure the plight of thousands of sufferers is erased by proper treatment.
Article at top of page " Pledge on ME after woman's death"quotes Andrew Gwynne, minister and more quotes from Sean including 'several professionals not believing her illness was real' and "palliative care was delayed because of this disbelief".
Leading article is second in length after one on riots. It's entitled " Legacy of Change" and writes about systemic failures in treatment of ME. It comments on Sarah and Sean's courage in seeking often painful answers over their daughter's death.

It hopes the coroner will issue 'a prevention of future deaths report as a blueprint for an M.E. treatment pathway' and that the health secretary puts it into practice.'