By David Tuller, DrPH
On Friday, Deborah Archer, the coroner in the inquest into the death of Maeve Boothby O’Neill, issued her factual findings. The bottom line: Maeve died from “malnutrition caused by severe ME.” Archer found that the Royal Devon and Exeter hospital and others involved in her care acted properly. She rejected the request of Maeve’s parents to deem the case a violation of Article 2 of the European Convention on Human Rights, which protects the right to life. She also ruled that Maeve’s death could not be attributed to “neglect” on the part of health care providers.
(Note: This post focuses on the medical care rather than the social care issues.)
As documented in nine days of testimony, systemic deficiencies—such as the widespread lack of awareness and understanding of ME among clinicians—led to questionable decision-making, with negative impacts on Maeve’s care. Many in the patient and advocacy communities were therefore dismayed and distressed by the coroner’s conclusions. (I didn’t watch the event online, given the time difference with San Francisco; I hope to be able to read the text soon.)
Archer will hold another hearing on September 27th to consider whether to issue policy recommendations in what is called a “report to prevent future deaths.” Although the coroner’s findings failed to assign responsibility or blame, the facts as outlined themselves make a powerful argument for the need for major changes in medical education, training, practice and research. Hopefully Archer will choose to pursue this approach in the next phase. (Sean O’Neill, Maeve’s father, wrote a moving and thoughtful piece in The Times about the changes he’d like to see.)
In conducting inquests, coroners must follow various legal guidelines and parameters in determining what evidence is within scope, how that evidence should be weighed and assessed, what burden of proof should apply, and related questions. For a legal perspective on Archer’s findings, I turned for comment to Valerie Eliot Smith, a barrister, academic, media expert and long-time ME patient-advocate. Her blog can be found here.
(Valerie and I have known each other for a decade. I have often consulted with her on ME-related legal issues. When I wrote my initial investigation of the PACE trial in 2015, she and her husband, Robin Callender Smith, offered invaluable advice and also suggested the name “Trial By Error”–which has obviously stuck.)
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Valerie Eliot Smith on the inquest findings:
I listened to nearly all of the two-week inquest hearing, which started on 22 July 2024. It was, inevitably, an extremely emotional and intellectually challenging experience.
The coroner’s conclusion was as I had anticipated, as were her findings on the Article 2 “right to life” point and her rejection of the rider of “neglect” argument.
NB. I have not yet seen the written conclusion so everything I say here is based purely on my recollection of the hearing.
The case did not reach the very high legal threshold for an enhanced Article 2 inquest. Similarly, the legal test for a rider of “neglect” to be added to the conclusion was also not met. It has a specific meaning in law and requires a much higher standard than the normal meaning of the word. It is not the same as “negligence”.
In the circumstances, the coroner’s conclusion of death by “natural causes as a result of malnutrition caused by severe ME” was the most likely outcome on the basis of a) the law and b) the evidence that was put before her.
I also listened to the coroner’s findings and conclusion on 9 August. It was unexpectedly long and detailed. I assume this is because the coroner was a) well aware of the public interest in the case and b) following best practice by explaining her reasoning in detail because of the sensitivity of the case.
The coroner referred to the relevant case law as set out in her conclusion. I have looked at it and it appears to have been correctly applied. The standard of proof required is “on the balance of probabilities” which means “more likely than not”. This is the normal standard of proof for civil proceedings.
The coroner made findings on the facts before her by assigning weight to the evidence given by each individual witness. This is clearly distressing for many people to hear (sadly, that is often the case) but it is the only way of reaching a conclusion. This is what happens in all legal proceedings (in some cases, this would happen with a jury making findings of fact but that was not the case here).
There will be a further hearing on 27 September so that the coroner can make a decision on whether or not she should write a Regulation 28 “Prevention of Future Deaths Report”. If such a report is made, it can make recommendations but these will not be binding or enforceable. Nevertheless, this would be a constructive outcome from Maeve and her family’s tragic story.
Maeve’s case received fairly extensive media coverage which is a positive outcome from this very painful process. However, some of the coverage was indifferent, or even actively unhelpful. The irrelevant terms “fatigue” and “tiredness” are still in frequent use, as is the indiscriminate conflation with long covid. These, and many other aspects of media coverage, require attention from the ME community in due course.
Inevitably, there were some very unrealistic expectations of what this inquest would achieve. Below is my summary of the purpose of inquests, which may help to clarify what could have reasonably been expected.
Purpose of an inquest
Inquests are fact-finding processes. They are investigatory rather than adversarial, although there can be occasional challenging moments, given the often distressing nature of the subject matter. It is part of the coroner’s function to manage such moments with sensitivity.
It is also a function of the coroner to manage and facilitate the giving of evidence. In Maeve’s case, the coroner has referred to around 6500 pages of evidence.
An inquest is not a public inquiry, as the coroner in this case has emphasised. The remit of an inquest is much narrower and confined to the death in question.
The purpose of an inquest is to:
a) identify the medical cause of death
b) answer four questions about the death – who, when, where and how (usually the most difficult)
c) come to a conclusion (not a verdict) about the death
An inquest is not a trial nor is it about apportioning blame. It is confined to establishing the facts and reaching a conclusion in a statutory form.
Any criminal or civil liability is dealt with separately in different courts with different investigative processes.
The possible conclusions for a coroner are generally one of the following:
Accident or misadventure
Alcohol/drug related
Industrial disease
Natural causes (including death from illness)
Open
Road traffic collision
Stillbirth
Suicide
Lawful/unlawful killing
I’m very grateful to Valerie for providing this needed overview of the process on ‘Inquest’ per se.
She said, wrt media, “Maeve’s case received fairly extensive media coverage which is a positive outcome from this very painful process. However, some of the coverage was indifferent, or even actively unhelpful. The irrelevant terms “fatigue” and “tiredness” are still in frequent use, as is the indiscriminate conflation with long covid. These, and many other aspects of media coverage, require attention from the ME community in due course. ”
I too have been infuriated about some of the language used in media articles. I listened to the final ’cause of death’ Conclusion from the coroner and she very clearly only mentioned ‘Myalgic Encephalomyelitis’, not ‘CFS’ or any of its vague variations. So, unless her written document of her Conclusions vary ( I’m making the logical conclusion, myself, that she should have spoken that into the evidence had that been so ??), it was highly inappropriate for some journalists or reporters to take it upon themselves to use the ‘CFS’ words in that context (even if the Corner had referred to those words occasionally in her, almost 3 hours long, spoken Conclusion). If memory serves the BBC were guilty of that (amongst other parties).
I too have been angered by the conflation of ME with Long Covid. It’s lazy and it appears it’s being driven, in part, by people new to both diseases (obviously those with long covid are, by definition, ‘new’ to post viral events that do not resolve quickly). I wish anyone choosing to advocate for people with ME would take more time to read more deeply into the history and the politics of this disease. Older advocates are fewer and fewer, many felled by this disease. Thus, misapprehensions of what ME actually is are being made over and over, compounding the situation whereby mistakes in advocacy are being made all the time, getting us nowhere. I’m sure this is a point of view that others will contest, but we need old heads on newer, less unwell, shoulders because the old shoulders have largely had to gracefully ‘bow out’. Having said that, Valerie’s blog and her model for moving things forward makes sense. If more people could be directed to her blog (tagged by David above) then that would be a constructive way to go, imo.
Getting back to the Inquest itself however, and speaking with others privately, including one family member who has a ‘partly’ medical background and understands Lady Shambles’ own situation wrt this disease but doesn’t have a deep understanding of ME per se, one positive taken from the Inquest was that the Coroner’s conclusion reported that all doctors giving evidence claimed that they did believe ME was a ‘physical disease’. Now many of us will have watched ‘said’ doctors provide their testimony and ponder about the nature of those claims, but what was said is what was said. In other words, as far as the Coroners conclusions are concerned ME *is* a physical disease and those doctors cannot row back on that unless they want to perjure themselves. Thus, imo, the Inquest met *its* legal remit and *we*, as people with ME, can point to these Conclusions saying that i) ME is a physical disease, ii) ME can cause death and iii) by using ‘Natural Causes’ as the overall reason for death bolsters point ‘ii)’, ie: that ME kills. If that is now entered into the consciousness of anyone taking an interest, but more importantly doctors taking an interest, and beyond that those who create health policy taking an interest, then quite a lot could have been achieved, I guess? The 27th September will determine the likelihood of the latter I imagine?
These are just the mental ‘rambles’ of Lady Shambles, who does not have a legal background at all. These are my own musings.
Could the Coroner have considered if Maeve was the victim of discrimination (because of her ME) and their failure to make reasonable adjustments because of her disability?
My experience of needing life saving treatment in NHS hospitals is that they consistently fail to make reasonable adjustments because of my ME.
I am awaiting the facts found in written form too but notice that Valerie has overlooked in her replies to David the role of Devon County Council (DCC). DCC is a branch of government – the Local Authority. It exists to implement legislation at local level and accountable via democratic processes in the form of local elections.
Every disabled adult in England has an absolute right to protection from harm and neglect under the Care Act (2014). Extensive evidence in disclosure showed the DCC failed in every one of its statutory duties to Maeve. At the time of her death, Maeve was represented by Irwin Mitchell (Southampton) who were at the next steps stage in taking DCC to judicial review. The contents of an email from Maeve’s solicitor were included in the DCC bundle.
Furthermore, the Coroner did not use her powers to summons a key DCC witness as promised at the PIRH (pre inquest review hearing – where the case was managed in view of the public). I was not informed of this decision until I asked about the key DCC witness, Social Work Manager Juliette Hill while we were discussing how to manage the absence due to ill health of another key witness, GP Dr Lucy Shenton.
Further to my post above. I have since discovered a Juliette Hill was being investigated by her professional regulator, Social Work England, at the time when Asst Coroner was telling us PIPs she would need to know why Hill could not be called to testify.
AB (above) if you or your carer have the capacity to sue for medical negligence of #ME, contact Tim Annett at Irwin Mitchell in Shefffield. No win no fee. Tim.Annett@irwinmitchell.com. Please share far and wide.
The one problem with the case that is hard to square in regards to neglect is calling this an unpreventable death. These deaths have been prevented with many patients including in the UK before and after this case, with the use of PEJ and TPNs. This was presented by Dr Weir as part of his testimony but it was dismissed by the coroner who didn’t find it compelling. Despite the fact he was one of only 2 experts on ME in the room and the only expert on nutrition in severe ME in the case.
I also find the situation in September extremely questionable, Maeve would have taken TPN early September but the hospital never offered it due to their belief she would die anyway 6 months later. PEJ and such were never even considered earlier.
The coroner chose to dismiss these aspects and for me they represent the core of the case, they are the key moments and facts with the rest forming a concerning background of clear misunderstanding of ME and no concern about learning. They also left doing anything too little too late and failed to recognise she was really starving to death throughout. So while it might not meet the legal threshold of neglect these aspects of the case show the death was preventable had the expert advice been followed in a timely manner, also evidenced by the world of ME outside the court room
Thank you for sharing your thoughts in this blog post. It’s helpful for those of us who emotionally and physically weren’t able to attend the inquest hearing. The entire thing is tragic, heart wrenching, wholly preventable.
The coroner dismissed the evidence presented by Dr Weir, who was one of only two experts on ME and the sole expert on nutrition in severe ME in the case, despite finding it uncompelling.
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