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

A coroner's inquest isn't a civil trial; there aren't carefully chosen expert witnesses for each side. It did seem to me that the structure of British inquests puts the family at a considerable disadvantage (for instance, the RD&E, DCC & GP lawyers were allowed to make submissions as to the law; and various physicians' evasions and obfuscations were often not picked up on, and people who were in essence defending their own actions were treated also as witnesses whose expertise was unchallenged by a fellow expert).

I made four posts about Roy's testimony on the day, if you're interested (one, two, three, four). She did not have an NJ or a PEG/J or IVN at any time. Roy was not just a gastroenterologist but one who had a special interest in nutrition and IF (and "gut-brain disorders") who headed a feeding-issues MDT and his expertise was not challenged in that respect.

In my own personal view of the situation a PEG/J may well have been beneficial. Obviously it is not an entirely risk-free procedure but is far, far less risky than IVN with its obvious and well-known risks especially of CRBSIs.

The coroner also said that a written copy of her remarks would be made available after the weekend after she had fixed up a number of typos so perhaps @dave30th, or someone else, might be able to acquire and post it?

For everyone feeling rather as downhearted as I have been about today, there's one hopeful paragraph from the coroner that I'd like to end this post with (may not be 100% accurate as from handwritten notes):

In making the findings that I have I hope that important lessons for the future treatment of ME can be learned from her death; no doubt, with the benefit of hindsight, things would be different in many respects and I look forward to considering these issues with Dr Hemsley on the 27th of September 2024 in the hope that future deaths from this disease can be prevented in the future.

 

Inevitable, natural causes, nothing could be done.

And yet —

- No or very late mitigation of suffering, with delayed institution of palliative care (where were those findings relating to mode of death?)
- Grossly undue emphasis on evaluating for factitious disorder etc, causing much more harm to the family
- Policy at RD&E has been changed (so clearly something could indeed have been done)

 

I don’t know if she didn’t understand this or if (like the hospital witnesses) she was evading it but the question is not whether it’s “real”. The questions are:

1) Did the hospital clinicians think it was a “medical problem”? The evidence suggest they didn’t. (Hence not wanting to “medicalise” Maeve.)

2) Did they believe that Maeve could get better by her own efforts, by thinking and behaving differently? Again, the evidence strongly suggests that they did.

3) Did their beliefs about ME/CFS have a negative effect on the way Maeve was treated? Again, the evidence suggests they did.

 

The Miller article was in The Observer. Different journalists. Different editors. Same website.

Guardian reporting of the inquest has been good to date.

 

By Sean O'Neill ("Reliving my daughter’s death was relentlessly heartbreaking"):

https://www.thetimes.com/uk/healthc...-painful-now-lessons-must-be-learnt-d0g6c50fk

Archive link, for those without access:

https://archive.ph/2024.08.09-20072...-painful-now-lessons-must-be-learnt-d0g6c50fk

 

I’ve seen two pwME tweeters who have been told they can have/keep their ng tubes in by their doctors who’ve been following the case.

 

I think since Covid the NHS has just broken down. GPS are dismissive to people with cancer. People are dying at home with advanced stage 4 cancer which has not been picked up and it’s too late for treatment.Lately I feel like we’re on a level playing field now, only because nobody is getting any treatment and everyone is being sent a text with a painkiller prescription without a proper consultation.

 

Yes. If we have to find a correlation with age, in my very limited experience. Old doctors tend to be more empathetic, and willing to listen. Middle aged doctors immediately assume functional/psychological. And young doctors are a 50/50.

 

Yes, “thanks to them” beautiful work

 

Yes.

ME patients are always either too well, ‘no medical rationale to treat’ or too sick for treatment, ‘too late, too sad. No nothing we can do now’ aren’t they?

Just never quite the exact right amount of sickness.

Goldilocks isn’t getting any naps or porridge around here.

 

Given the hour in San Francisco, I didn't attend the hearing live today. And hopefully we'll all see the text, but from what I've read about it so far this is more or less what I'd expected, given the forum. I don't know the law, but this wasn't a criminal inquiry or a prosecution and she has certain parameters for what she's supposed to find and what evidence she is allowed to consider--for example, if no one has challenged the expertise of an expert. I should re-read what Valerie wrote about inquests--I haven't since she posted it. I'm curious about her thoughts on this.

These findings don't seem to me to have anything to do with whether she thinks a strong further preventive order is necessary--she's established as fact that this is a serious disorder, and she's established as fact that no one had a xxxxxxx clue what to do about it, and the NHS had no policy to deal with this. So all that seems like a pretty good argument for further action after she hears from the medical director next month. But I'm not a lawyer, I'd like to see the full text.

ADD: But I could be completely wrong! Someone else would say, this proves she's gonna do nothing more, and they'd be right. I'd really like to read it so I know what I'm talking about. I haven't yet seen a copy but hope to over the weekend.

 

I wish they hadn't put CBT as a treatment for ME in the Guardian article. Rather focus on the disability of ME. Supportive CBT may only help people having problems adjusting to their illness and want help. Many adjust like anyone else with a chronic illness. This is why ME communities, like this forum, are important to people in so many ways.

Yes, the parents not having a lawyer is a big problem for coroner's courts, Sarah was clearly getting tired, trying to challenge people, to get to the crux of the problem, and the coroner shut her down at times when she became emotional.

No medical consultant took responsibility for her care as an outpatient and it appears none are now taking responsibility for their part in her death. They all pay indemnity insurance to pay for medical defence lawyers, which is their right, but this is not given to the family.

I consider Dr Weir as the lead medical specialist in the UK for ME. He was not listened to or Helen Baxter of the 25% Severe ME group. It is striking the different care in the differing countries, as William Defoe has highlighted, but sadly in the end it comes down to money and the culture of the medical establishment. William Defoe's parents are very well educated on ME and can pay for his treatment (or it is covered by Medicare). I don't know. NZ is a lot more like the UK but we do appear to follow the USA in trialling experimental treatments which I am not sure is done in the UK by GP's but I presume it is?

But when it comes to Hospital specialists, they stick within their areas of expertise and their current literature which definitely is putting ME in the functional category. To put it bluntly from my standpoint it is "Yes, it is real but we can't help you, go over there and die" All the medical colleges in the UK (medicine and psychiatry) are to blame for holding on to these diagnoses when clear biomedical evidence shows ME is not a) psychological and b) not psychiatric. They are not questioned about the paucity and lack of strength of their scientific literature, but we and our doctors are.

It appears Dr Strain was a physician who had upskilled himself. He was the designated ME "specialist" but he clearly thought Dr Weir had the most specialised knowledge for Maeve. I believe he was trying to give Maeve hope by talking about taking her to Germany for treatment with ?plasmapheresis for autoantibodies which is still in the very early experimental phase. She was not well enough to travel to another country. But Dr Strain also suggested quite reasonable blood tests on the first admission to test her cortisol levels (Synacthen Test), I don't know if they were done. I will probably have a different view on giving additional fluids to help her OI, compared to other doctors on here, but on my risk/benefit calculation, that should have been tried even with normal U & E's. And I believe she was not terminally ill on her first admission (she had lost only 10% of her body weight) triggering her admission and should have had a trial of an NJ tube and then a PEG. If it was some sort of mast cell reaction in her gut, the hospital dietician appeared to be trying different feeds and she was sent home on them. There were potential treatments for MCA to trial also as an inpatient. It fell on deaf ears. Failure to provide proper medical follow-up was also a major failing.

They minimised her illness (and definitely there was stuff going on about her behaviour being "wrong"). I do believe some of the FDIA evidence came from the hospital, as DCC would have asked them for a report of some kind. This delayed them focussing on her physical needs. (From my point of view as a retired psychiatrist, behaviour is just behaviour, if you don't ask and try and understand the patient's experience, from them and their main caregiver, you have failed the patient. If you are always looking through a lens that ME is a psychosomatic illness, you have failed the pwME and their carers. If you think there is psychological factors with ME, outside the normal psychological process of having a chronic and (potentially deadly) illness....Where is your questioning of that? where is your proof? there are many reasons to behave in a certain way, not everything is pathological).

There is no clear evidence they asked a CL psychiatrist or psychologist to clarify this "behaviour" (which of course could have just made the situation worse...but Physicians have no formal training in health psychology or psychiatry). The gastroenterologist, but also all of these physicians, believed their own psychosomatic ideas on our illness (no doubt taught to them), but also may have had their own personal biases driving that.

Of course, I would like read all the testimony and I think Nightsong with her knowledge and experience, sums it up for me. I would also like to see the medical, CL psychiatry, nursing and any social worker's notes. But we will never see them unless there is a public inquiry. That seems unlikely, but one never knows, maybe after Dr Helmsley takes the stand we can see what stance he takes as Chief Physician of the Trust. He will have had to do his own internal inquiry. I wonder what he will say.... They have made changes, that is the first public admission of failure. I hope that will help other people in Devon and the UK and in other countries like my own.

I know, if I got very severe ME, I would like to go to hospital and be treated like any other chronic illness with feeding problems. Although there are some challenges for us due to the severity of our illness (cognitive dysfunction, communication, PEM, hypersensitivities due to ME, co-morbidities etc), that shouldn't impact on the standard of care we are given. If I had had the lack of treatment she experienced at this hospital trust, I can understand from M's position to have used the last of my physical and mental capacity to refuse further treatment and die at home.

Her mother and M tried their very best to advocate for themselves, with an advanced directive and paid for private ME specialists, but that was just not enough. I have a partner that would strongly challenge medical decisions based on psychologising this illness, if I am ever an inpatient, i.e. getting a lawyer and asking for a judicial review, if they deny me treatment or start talking psych rubbish. But if I didn't have him, I would be at their mercy, with my advanced directive clutched in my hand, hoping they would read and abide by it....

I think the last consultant, Dr Fox may have been thinking of sectioning her (he basically said he would've used the strongest language to persuade her) but because she had mental capacity, he had no choice but to discharge her home and palliative care was started. I think M thought she was terminal and no longer wanted the medical care they were offering. The damage had been done during the first and second admission from the sounds of things. She knew it was too late. I don't know if intervention then would have saved her life but she used her right for self-determination and denied consent. That, unfortunately does, I think, allow for the coroner's findings on this stage. But I do wonder if Sarah and Sean will appeal the finding as the neglect stipulation was not allowed. I think this could be legally challenged but don't understand the ins and outs of coronial law in the UK.

I don't know what the UK version of this is. But I believe Maeve and her family were denied legal rights whilst M was an inpatient. In my country, this is the Health and Disability Code of Rights. https://www.mcnz.org.nz/support/support-for-patients/your-rights-as-a-patient/

This would have provided me, if I was in a similar position, with an opportunity to get a Second (and Independent) Opinion on the Gastroenterologist's advice. And if CL psychiatry was involved and talking psychosomatic and unfounded psychological stuff - a Second Opinion (and Independent and chosen by me) of that too. If this found in my favour, through legal scrutiny of the treating doctors via Judicial Review, that would examine all the evidence, and worked through all the eventualities of not providing certain treatments (eg TPN) and carefully looking at risk /benefits at that point in time etc. Of course, that takes money. I think Sarah was in a very difficult position being a solo mother and carer and it saddens me she did not get proper Social Worker support, which would have provided information on the legal rights for herself and M and legal processes she could have used.

In my country, if in a similar situation, my family could now make a complaint about my care, to the Health and Disability Commissioner (HDC), who would then have to make a formal inquiry into all the care provided by the hospital and the individual doctors (and the hospital would have to release all the medical notes to the Commission). The HDC get independent second opinions on the treatment and then individual treating doctors, if they have been found in breach of the code, are referred to the Medical Council for disciplinary purposes.

edit typos

 

Exactly. And when they say they believe ME/CFS is “real”, what they actually mean is that it’s functional but that functional disorders are real. Of course, being classified in such a way results in getting awful medical care in the belief that medical care makes functional disorders worse.

 

From skimming it seems that the coroner only considered the effect of ME on nutrition but not the other way round.

Maybe that was also the reasoning of the hospital staff, social service etc.: No reason to improve nutrition before improving the patient's ME/CFS?

Did neither the consultants nor the coroner consider that also nutrition can have an effect on ME -- i.e. malnutrition can make the illness worse, providing adequate nutrition could prevent further decline?

Didn't they consider that even if providing better nutrition and hydration could not improve ME/CFS or prevent its progression, it still would be a reasonable thing to do as in every other illness, and in the terminal phase at least give palliative care?

Still not sure if I understood correctly that

a) the hospital staff seemed to base their reasoning on "all tests were normal" when Maeve's weight loss certainly wasn't normal and even drinking was often (later mostly) too exhausting,

b) a person in charge was afraid to "medicalize" Maeve -- didn't provide her with NG tube early on [*], which if had failed at that time could have been followed by NJ/ PEG/PEJ and/or even PNT at a time when she had still been able to tolerate the hospital environment for initiating these measures,

and c) there were no support by the social service, zero care by community nurses at home?


Added: [*] or, as @ME/CFS Skeptic pointed out, if NG deemed too risky (aspiration), then start with NJ or PEG/ PEJ right away

 

(Apologies once again for just popping in -- and thank you to everyone who reported on the coroner's summary)

 

Why do you say that? (Also addressing others who have said this is what they expected / no other outcome would’ve been possible).

A woman died of malnutrition. She died of not getting enough nutrition into her. She died of this malnutrition despite being admitted to hospital 3 times, precisely to help with her malnutrition and to get her fed. She died despite wanting to be fed. Despite going into hospital those 3 times, and despite constantly asking, she did not actually get any feeding support except a small trial of an NG tube (while being asked to sit upright which she could not do). She also was not given NJ, PEG, TPN despite wanting further help. She also was not given the *conditions* to be able to cope in hospital without deteriorating.

How can people come to the conclusion that this was not the fault of any one doctor or that there’s nothing they could have done? Every doctor who passed through her care and who made the decision not to help her, could have done something. As someone else said, people don’t (or shouldn’t) die of malnutrition in a first world country. They each made that decision (either through their own dodgy risk assessment, or because they didn’t want to “medicalise” a “functional” illness), not to help her.

 

Key issues that determined this outcome;

- parents did not have legal counsel other parties did, which put them at a huge disadvantage
- the drs all seem to have been coached
- coroner suggested Alistair Miller as expert witness (preinquest)
- no documentation found on the safeguarding Maeve requested (multiple times, if I remember correctly)
- there was no gastro expert, the consultant’s remarks were taken as truth (while he was covering for his decisions)
- dr Weirs testimony was rejected, imho the only real expert on ME
- strange that dr S concluded nothing could have been done to change the outcome (and suddenly has a nice new shiny NHS job)

Is there a possibility for appeal?

 

Sarah is asking on Twitter is there are any ideas regarding the coroner’s findings.

Edit - i think I figured out how to add a screenshot. Hopefully.

 

I see a lot of twitter or X links.

The issue with links is that tweets can be removed, the link can change, X can cease to exist etc etc and so we could lose important information.

my question; can we please screenshot them, like mr Magoo?