Trial By Error: NHS Lacks Policy on Severe ME, Per Testimony in Pre-Inquest Hearing on Death of Maeve Boothby O’Neill
3 Comments / By
David Tuller / 30 November 2023
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........................................................
