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

If the hospital doctors were asked if they thought the thing was one kind of thing or the other, and they answered yes to neither, but said it was another kind of thing altogether which it may or may not be depending on Philosophy, but that wasn’t a medical thing and they were being asked to name the thing in relation to medicine and medical terminology which they failed to do with this answer, thusly meaning that they didn’t answer the question, that is something that a lawyer would notice. No medical knowledge required.

So I didn’t hear testimony but if that’s how it went down, it’s not lack of specialist knowledge in this area that stopped the coroner asking further questions. She wasn’t tricked here unless you’d have reason to believe she doesn’t possess the skills to basic requirements of legal training.

 

An absolute farce from start to finish. Disgusting and disappointing verdict. Although I fully expected it, I’m still disappointed.

 

I am not suggesting she doesn’t possess the skills. I think it is more that she had an adequate answer in that they thought it was a real illness.

whereas if it had been one of us asking we would have seen more than that and asked again whether they thought physical etc.

I think different backgrounds and knowledge make each of us see things and hear things differently. To anyone else someone saying they think it’s a real illness means it is physical. But we know that’s not necessarily the case and in these instances they were toeing the line they had been given.
It was very clear that that it was rehearsed as they all gave the same answer very quickly and without pausing to think about it.
Only one witness that I recall was pressed further on it and they then flustered about it and said that there was no known cause and therefore it couldn’t be ruled either way.

 

I’m saying as a lawyer she needed no special knowledge of ME medical politics in order to notice that those she questioned hadn’t answered her question as it was put to them. In the terms that it was put to them. On her terms.

 

Sadly I can see how the Coroner came to the verdict, from a legal point of view.
I have hopes for the Future Prevention of Death because the Hospital Trust has said there are no specialist ME beds anywhere. There are no ME lead consultant specialists for SVS ME.

The Coroner was likely never going to focus on or find that doctors “think ME is all in the mind” because that problem is systemic, leading to individuals acting as they did.

 

Yes
& since advocacy efforts in general are often still focussing on whether it's "real" or not, its hardly surprising that when the drs said 'yes its real', the coroner assumed that meant that they didnt think it was 'not psychosomatic'. Particularly after that one doc gave a disingenuous reply about whats meant by 'functional'.

Obviously the outcome is a travesty, but i can see it going 2 ways.. maybe both.

1)people think 'wow ME can kill you' - which is more likely to be a gen public response

2)people think 'wow if we dont intervene & "help" these poor people, they will end up dying'. Which is more likely to be the medcial response....

Terrifyingly, we know what the interventions & 'help' are likely to involve.

People will be even more likely to try & stay off Drs' radar no, i know i will.

 

Two new articles in The Guardian:

Devon woman died from malnutrition due to severe ME, coroner concludes
https://www.theguardian.com/uk-news...lnutrition-due-to-severe-me-coroner-concludes

What is ME and why is the NHS approach to it being criticised?
https://www.theguardian.com/society...s-me-myalgic-encephalomyelitis-nhs-criticised

 

I wonder if an appeal or a civil hearing might tease this nuance out where someone can get cross examined better but it would be an awful lot for the family to put themselves through with probably negligible odds of any satisfaction, the system doesn't want to know.

I think the scale and extent mistreatment we endure due to the psychologisation is impossible to grasp and believe unless experienced directly.

I only hope some systemic recommendations comes out of the 27 September and the high profile makes it harder for other hospitals to repeat this same tragedy - especially given that there are some very concerning cases of other individuals at risk in hospital

That was the first thing my husband said to me - "we have to avoid hospital now, it's not safe. "

 

The outcome was mostly what I expected, though that hasn't make it any easier to hear. It would have been impossible for the coroner to say that Maeve's death might have been prevented, or that an individual doctor took unreasonable decisions. There's too little evidence, too few case histories for anyone to argue the doctors should have known that X or Y was a better course of action.

I really hope the coroner's going to recommend better training for doctors and better provision in hospitals. Some of what allowed this to happen is a long way up in the system, and if that doesn't change, it'll almost certainly happen again.

I feel for Maeve's family today. Even if it's exactly what they were expecting, it must still be unbearable.

 

Sean O'Neill on Twitter,

"It's important that Maeve's inquest recognised the seriousness of this awful illness. What is more important is the final hearing on Sept 27 to consider a Prevention of Future Deaths report.

The public health minister @GwynneMP understands ME and says Maeve "fell through the cracks". Actually it's worse. She fell into a gaping hole in our healthcare system where there was no specialsit care for her illness. This was a systemic failure not the fault of one hospital.

and, to people with ME, Tell Your Stories. Don't rant on twitter. Tell your MP, your local newspaper or website, your local radio station. And all you journo colleagues who have told me about your friends and relatives with ME, make their voices heard. Now."

 

I wouldn’t expect her to find that either.

But coroner could have found that medics were unfortunately distracted from the immediate problem in hand a starving patient whose first requirement was nutrition trying to decide whether their patient fitted best in their own services or psychiatric services. Since they couldn’t immediately prove that their patient lacked capacity they should have fed her first time around.

 

Just quoting my own post in case this appears out of sequence: one of the important things about this verdict is that it is itself evidence.

Doctors and hospital boards cannot now say they didn't know severe ME can be fatal.

 

Summary from Action for ME,

"The coroner provided a very detailed overview of all the evidence and chronology of events from Maeve’s first diagnosis of ME to involvement from her GPs, hospital admissions and the last few days of Maeve’s life. The recorded cause of Maeve’s death will be one of natural causes, specifically malnutrition which was caused by severe Myalgic Encephalomyelitis. It will be stated that Maeve died at home after three admissions to hospital where they were unable to treat her Myalgic Encephalomyelitis. Repeatedly through her reading of findings, the coroner outlined her hope that the inquest will lead to improved care and support for people with ME in the future.

The coroner highlighted the lack of knowledge and understanding of ME and how to treat it on a number of occasions. She stated that there were several factors, including delays and communication errors between professionals, which may have contributed to Maeve’s deterioration, but she could not say the factors caused or contributed to her death. Nevertheless, they were important to note.

The coroner stated that she did not find any of the clinicians disbelieved that ME was a real illness or that they held a concerning view of the illness. She highlighted some concerns about record keeping and asked the NHS Trust to ensure that they address all of her concerns, if not already, in the hearing on 27 September on the prevention of future deaths. She also highlighted that a named healthcare professional should have been appointed to coordinate Maeve’s care as soon as it was realised she required admission to hospital and that it was ‘unrealistic’ for Maeve to have been discharged home on the second (of three) occasions from hospital without a 24-hour care package in place.

The coroner was unable to conclude that Maeve failed to receive the care that she needed as someone with severe ME because of the lack of knowledge that currently exists. Despite this, more work must be done to ensure the factors that led to Maeve’s death are never repeated and that people with ME are properly cared for."

https://www.actionforme.org.uk/news/maeve-boothby-oneill-inquest-conclusion/

 

In a civilized country that is among the world’s leading economic powers, how can malnourishment be considered as a natural cause of death?

 

Quite a nice coverage on channel 4 news just now. I have no link but I’m sure it will be available later.

 

Good Times article here ("ME sufferer ‘fell through cracks of dismissive’ NHS, says minister"):

https://www.thetimes.com/uk/healthc...cks-of-dismissive-nhs-says-minister-gqntzznkf

Archive link for those who don't have access:

https://archive.is/20240809180856/h...cks-of-dismissive-nhs-says-minister-gqntzznkf

 

Surprisingly good articles from The Guardian, perhaps they’re trying to redeem themselves after that awful one by Dr Miller.

 

And another from ITV

https://www.itv.com/news/westcountry/2024-08-09/woman-died-from-malnutrition-due-to-me-coroner-finds?fbclid=IwZXh0bgNhZW0CMTEAAR2dJc771LaJIdej7shzv6rV1MslHt-R8PrD1Gvr9I3eHpBkDcVJEftWzAs_aem_3HLAZ1eXXG30iZJ_GVRnkg

 

Yes that consoles me. And the fact that if the hospital didn’t fail (they did but) then the whole system must be unfit for purpose.

 

(Also shared to the Sussex & Kent ME/CFS Society thread: https://www.s4me.info/threads/united-kingdom-sussex-kent-me-cfs-society-news.1906/page-9#post-547776 )

For what it is worth:

Source: Sussex & Kent ME/CFS Society
Date: August 9, 2024

[Press release]

Very Severely affected ME Patients ----------------------------------

Severe ME Awareness time this year coincides with a British coroner's report (9/8) on the death of a 27 year old woman while suffering from Myalgic encephalomyelitis(ME) also known as Chronic fatigue syndrome(CFS).

Around 20% of those affected by the often life changing illness are severely affected being housebound with a few being bedbound and reliant on others for care. While it is unusual for people to die with the illness it is not unknown and this has occurred a couple of times in Sussex over the years.

Those who are mildly or moderately affected are well served by an experienced specialist multidisciplinary team based in Haywards Heath that receives around 40 new referrals per month. The service is not however commissioned to accept severely affected patients.

The Sussex & Kent ME/CFS Society is calling for NHS specialist services for those who are severely and very severely affected across the county.

Those very severely affected were often referred to a specialist centre in Romford but that closed some time ago leaving nowhere for very seriously ill patients to be sent to.

Professor Leslie Findley who was the lead consultant at the Romford Centre says: 'Nothing new has come out of this case, and a coroners statement may alter the attitudes of the powers that be, but will not alter medical and scientific understanding. The whole issue of severe, and in particular, very severe CFS/ME was discussed in the 1990s. Indeed, the last labour government launched an ME initiative from the one NHS unit that was set up to manage those with severe and very severe CFS/ME. This unit did this successfully, but unfortunately funding was not continued. We were unable to get support from local health services, central government and in particular, from the charity sector. Nobody was interested. It is a myth to say that severe and very severe cannot be managed to the advantage of the sufferer, but it does require designated beds in specialist units with appropriate medical and therapeutic teams. Until this happens, the case we have before us is going to be repeated ad infinitum. The knowledge does exist how to manage these unfortunate people with very severe ME, but it cannot be done from general practice or general medical wards.'

Professor Leslie J Findley Previously Director National Centre for Fatigue Syndromes Essex Neurosciences Unit

The Sussex ME/CFS Society is calling for NHS specialist services for those who are severely and very severely affected across the county.

Colin Barton of the ME/CFS Society says: 'It would seem that those most in need are the most overlooked in Sussex and this cannot be right'.