By David Tuller, DrPH
During the inquest into the death of Maeve Boothby O’Neill, both of her parents refrained from making public statements about the proceedings. The inquest was held in Exeter, in southwest England, UK, from July 22nd till August 2nd. After the coroner, Deborah Archer, issued her findings–that Maeve died of malnutrition as a consequence of her severe ME–on Friday, August 9th, the parents have felt freeer to speak out. As I noted in a recent post, Maeve’s father, Sean O’Neill, wrote a piece for The Times, where he is a reporter, that calls for major changes in education, training, and research.
Sarah Boothby, Maeve’s mother, spoke at length about her daughter during a report on the case last week on Good Morning Britain. The program, which ran for more than 14 minutes, also featured Dr Charles Shepherd, medical adviser to the ME Association. In the interview, Boothby recounts how she and Maeve both came down with some sort of viral infection when her daughter was 12. While they both appeared to recover, Maeve subsequently struggled with repeated bouts of exhaustion and related symptoms.
When they consulted with the doctor, Boothby recalls, he said, “Let’s not medicalize this too soon.” Many parents, of course, receive similarly problematic advice. You can watch the episode here.
**********
Sarah Boothby’s comments on Virology Blog post
Boothby also posted a comment at the end of my last post—a “deeper dive” into the coroner’s findings. I thought it was worth highlighting her perspective in a separate post, so I’ve included it below. The comment started with a quote from the standard of evidence Archer used, as cited in her report.
“the question is whether, on the balance of probabilities, the conduct in question more than minimally, negligibly, or trivially contributed to death” [quote from the inquest charge, as cited in Archer’s report on her findings.]
If inquests can only find individuals responsible for ‘the conduct in question’ then Article 2 will only ever apply if a person dies in custody. Maeve’s death represents the systemic failure in UK health and care provision for any person with ME. I am no lawyer, and struggled throughout to find anyone with practical knowledge of inquests to advise me. As a qualified social worker I am familiar with the duties of state employees under the Human Rights Act (1998). Even when the Coronavirus Act was implemented in order to justify removing so many of our rights during the SARS-CoV 2 pandemic, Parliament agreed nothing in it could be enforced that would breach the Human Rights Act. In disclosure hospital records show Maeve’s right to a private and family life (Article 8) for example, was considered in the context of her wish to be discharged home without a plan in place to provide the care she could not get in hospital and that I could not provide without help. Devon County Council has a duty to assess, plan for and protect from harm every vulnerable adult. The hospital would not have agreed to discharge if Maeve had been medically unfit – they would have been found negligent if they had. Why Archer chose not to investigate how discharge into the community was not met by the assessments that had been explicitly agreed between the ward matron and social work managers is a mystery. How is it that Community Social Services, ie statutory services bound by the Human Rights Act as the supreme consideration, was not found to have contributed to Maeve’s premature death? If that were true, Maeve would not have been taking DCC to judicial review for failing in its statutory duties to her. She died first, as would anyone else at such high risk who relies upon litigation to protect them. This is why we have this legislation, to assist in the prevention of deaths. Hospitals depend upon local government to make discharge home safe. It could have been made safe, indeed with a social worker alongside Maeve and me, I know death from malnutrition would have been prevented. We had an outstanding GP. We needed a competent Social Worker because they have the power to bridge the gaps between hospital and community care. Yet none was assigned, not accidentally but by design.
For a short time my faith in English law was restored by the disclosure of so much evidence. I trusted the Coroner when she said she had reviewed it all. I have reviewed it all and know what has been left out. Narratives are created by the order of the telling, what we include and what we leave out, the authority given to one character over another, the sympathy shown to the differing points of view. The full story of how Maeve died is what I had hoped the inquest would tell, founded on facts in disclosure and knowledge of ME. I hoped for too much, again. Again I am obliged to accept adequate funding for biomedical research – that produces verifiable evidence of disease – is the only route to us acquiring enough expertise for enough people to know how to safely manage ME. Maeve knew and understood this. She died because she knew more about ME than anyone she ever met. Even Dr Weir could not understand why 3g l-Carnitine daily had helped slow her descent into the living hell of very severe ME – but she did. She was a fine scholar, and a good teacher. That English law cannot learn from how she died as a direct result of institutional neglect, and that this is a Human Rights matter, exemplifies the waste this country made of her. It was my great privilege to have known her. I wonder if Archer had had the chance to meet Maeve if she could have inferred self neglect as her findings do.