NHS Lacks Policy on Severe ME, Per Testimony in Pre-Inquest Hearing on Death of Maeve Boothby O’Neill

By David Tuller, DrPH

In January, I wrote a piece for Codastory.com about Maeve Boothby O’Neill, a young woman from Devon, England, who died from ME-related complications in October, 2021, at the age of 27. This week, at a pre-inquest hearing, it was revealed that the medical director of the hospital involved in Maeve’s care declared in a written statement that the UK’s National Health Service has no policy or guidance on severe ME cases and that “action is required at the highest level” to address this deficiency.

Maeve’s parents, Sarah Boothby and her ex-husband, Sean O’Neill, have been pushing for an inquest since Maeve’s death and have been frustrated at the delays in the process. The preliminary hearing was held this past Monday at 10 am. (In San Francisco, I got up in the middle of the night to watch the proceedings on Zoom. But the sound on my end was so garbled that I couldn’t understand a thing. After a while, I went back to bed. Others on the Zoom call apparently did not have the same difficulty.)

(Earlier today, I spoke with Boothby about her impressions of the hearing. Here’s a recordng of our conversation. It’s on youtube but is audio only. The connection wasn’t the best; we seemed to have had a slight sound lag.)

Maeve died at home after three stays at the Royal Devon & Exeter Hospital in the preceding months. She was unable to eat and required a feeding tube but hospital personnel refused to accommodate her wishes. In the end, she chose not to return to the hospital because she didn’t believe she would receive the care she needed to save her life.

In May, 2022, O’Neill, a prominent correspondent for The Times, wrote about his daughter’s death; he followed up last July with another article slamming the delays in the inquest. On Monday, a Times colleague, Will Humphries, covered the proceedings. The headline on his report–“Hospitals have no services for most severe ME cases, coroner told”–highlighted a key point made repeatedly by Maeve’s parents and ME/CFS advocates: This case is not just about one woman’s untimely death but involves a much larger failure on the part of the NHS.

The hearing was essentially an exercise in housekeeping to prepare for the main event—a full two-week inquest expected to take place sometime next year. At the hearing, both O’Neill and Boothby requested the presiding coroner, Deborah Archer, to hold an Article 2 inquest, a process based on a plank of the European Convention on Human Rights. Article 2 of the convention protects people’s “right to life,” and an Article 2 inquest allows for a broader examination of systemic lapses or flaws implicated in a death. Archer is expected to rule on that aspect of the case in the near future.

The hearing was not designed as a forum for introducing evidence. In his remarks to Archer, however, O’Neill managed to highlight revealing comments made by Anthony Hemsley, the medical director of the Royal Devon & Exeter Hospital, in his written statement for the inquest, which has not been made public.

According to the article in The Times:

O’Neill, speaking at a pre-inquest review hearing, told Exeter coroner’s court that Anthony Hemsley…said in a recent statement that “for patients with severe [or] very severe ME there are no commissioned specialist inpatient services both regionally and nationally.”

In a statement to the coroner’s court, which has not yet been made public, Hemsley said: “This gap in service has also been confirmed by the local integrated care board [responsible for planning and funding most NHS services in an area]. In order to rectify this situation, action is required at the highest level”…

O’Neill told the coroner that Hemsley was describing “a failure to protect not just Maeve’s life but the lives of those, like Maeve, with severe ME.”

This was not a case of a local hospital being unable to treat a patient with a particular and unusual illness,” he said. “This is a nationwide failure to help ME sufferers. This is the very definition of a major systemic failing.”

In my view this is an admission that there was a breach of the’ duty to protect someone who was in the care of the state … That breach, in the form of an admitted inability by the NHS to provide care, led directly to Maeve’s death.”