By David Tuller, DrPH
The British government, the National Institute for Health and Care Excellence (NICE), NHS England, and others have responded to Deborah Archer, the coroner in the case of 27-year-old Maeve Boothby O’Neill, who died in 2021 from complications of ME after three hospitalizations failed to halt her decline. At the same time, the Royal Devon University Healthcare (RDUH) NHS Foundation Trust, which runs the hospital where Maeve died, has released a clinical guidance for a “planned and unplanned admission process for severe or very severe adult ME patients.”
While any progress in addressing the enormous challenges revealed through the inquest is welcome, how much these steps will advance that goal is another question. They certainly represent a state of greater awareness on the part of critical organizations. Hopefully these and other development will ultimately lead to better care.
The inquest into Maeve’s death was held this past summer in Exeter, the university city in southwest England where she lived. The testimony and related evidence indicated a huge gap in care for patients like Maeve, who essentially starved to death while medical and social service personnel debated and argued over how to treat her and whether her condition was medical or psychological. The events have been widely covered by prominent UK media organizations. Maeve’s father, Sean O’Neill, is a long-time journalist at The Times and has written extensively about his daughter’s death, the inquest, and the failings of the health care system.
While the coroner found she could hold no one responsible for Maeve’s death per the required evidentiary standard, she nonetheless identified a series of missteps and lapses that she thought might have had an impact. She subsequently issued what is called a Regulation 28 report–a report to prevent future deaths, sending a copy to the Department of Health and Social Care, NHS England, and the National Institute for Health and Care Excellence (NICE), among others. She asked the agencies to explain by December 4th how they planned to address the concerns raised in the report.
Here is the opening of The Times’ story, from O’Neill’s colleague Fiona Hamilton, on the various responses to Archer:
“The NHS is carrying out an assessment of myalgic encephalomyelitis (ME) services across England after the death of Maeve Boothby O’Neill, whose case highlighted a lack of understanding and inability to care for sufferers of the illness.
“The National Institute for Health and Care Excellence (Nice), which provides advice to improve healthcare, is also re-examining its guidance on feeding support for people with severe ME. Education of medical professionals about patients, who have often been stigmatised, is also being ramped up.
“Andrew Gwynne, the health minister, has committed to better research ‘with the aim of better understanding the causes, identifying new treatments and improving patient outcomes.’”
Sarah Boothby, Maeve’s mum, believes the inquest process, while long and frustrating, has at least managed to highlight the disastrous state of care for patients like her daughter. “What the inquest has done is to provide a degree of scrutiny of the evidence,” she said. “They’ve gone through the process of investigating a death from ME and found what I would call systemic neglect.”
Boothby met recently with Gwynne, as he himself noted in his letter to Archer. She believes Gwynne, who has been open about his own experience with Long Covid, is committed to seeking better care for patients—despite the limitations of his role. “We could not be more lucky in having this minister, but that doesn’t change the fact that he’s a politician and not the NHS,” she said.
In his letter, Gwynne noted that the government’s long-awaited “ME/CFS interim delivery plan” will be published in March of 2025. The plan has been in the works for years, and the March date represents a delay in publication of the final report. The plan “will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease,” wrote Gwynne.
In its letter to Archer, NICE promised to “work with colleagues from the Royal Devon University Healthcare NHS Foundation Trust to see if there are examples of good practice that we can link to from our guideline pages” and to “consider appropriate amendments to the guideline on ME/CFS to emphasise the need for appropriate nutritional support.” NICE published a new ME/CFS guideline in 2021 that does not fully contemplate the sorts of circumstances involved in Maeve’s death and in other recent severe cases.
In its letter, NHS England reported having established “a specific working group to determine if additional support can be provided to commissioners of ME/CFS services,” with the first step being “a stock take of existing CFS/ME services in England.” The use of the term CFS/ME in this context is interesting—a tacit acknowledgement, perhaps, that many local NHS trusts have failed to implement NICE’s 2021 ME/CFS guidelines adequately, if at all.
The letter also referred to the new guidelines posted today by the NHS trust in Devon. “We understand that RDUH are in the process of developing formal pathways for acute admission and emergency admission for patients with ME/CFS and that the details of these will be shared with the Coroner by the Trust,” the letter noted.
Sean O’Neill had a mixed reaction to the developments, as quoted in The Times:
“It is a positive sign for ME sufferers that all these public bodies have listened to the coroner and responded to her findings.
“However, the actual responses are lacking substance. There is no sign that anything will be done to tackle the coroner’s main concern — that care provision for people with severe ME is ‘non-existent’ in the NHS. And it is upsetting to hear that the Department of Health’s delivery plan on ME appears to have been delayed again until March 2025 — almost three years after work on it began.“