Coroner demands urgent action to prevent further deaths from ME

The health secretary and NHS officials must urgently address the “non-existent” care available to ME sufferers and the lack of funding for research into the condition or risk more deaths like that of Maeve Boothby O’Neill, a coroner has urged.

Assistant coroner for Devon, Plymouth & Torbay, Deborah Archer, who conducted Boothby O’Neill’s inquest, issued a prevention of future deaths (PFD) report, the first of its kind involving the poorly understood condition of ­myalgic encephalomyelitis (ME).

Archer, who concluded that Boothby O’Neill, 27, died of malnutrition as a result of ME, has called on Wes Streeting, NHS officials and other health bodies to take urgent action. 

In her report, she said: “During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken.”

Boothby O’Neill’s death in October 2021 has become a landmark case highlighting misunderstandings of ME, also known as chronic fatigue syndrome, and the lack of treatment available for severe sufferers. 

Boothby O’Neill, the daughter of Sarah Boothby and a senior Times newspaper journalist, Sean O’Neill, suffered from ME since her teens which left her bedbound, unable to speak and malnourished.

She begged for help to eat when she became so fatigued that her body shut down, but doctors were unable to treat her illness, despite three admissions to the Royal Devon and Exeter Hospital in 2021. She chose to die in her home “in the care of those she loved” rather than in hospital.

Sean O’Neill condemned the “shameful” lack of action to address ME even after his daughter’s death

In August, after a two-week inquest, Deborah Archer concluded that Boothby O’Neill, who had suffered from the illness since her teens, died from natural causes when doctors were “unable to treat the consequences of her severe ME.” 

The coroner’s PFD outlines how, despite Boothby O’Neill being tube-fed during one admission, it was not adequate for her to recover. She told the inquest that care for patients with severe ME “is non-existent”, and that hospital admissions were “very difficult for Maeve to endure” because of the lack of expertise on wards.

Deborah Archer’s report highlights the absence of specialist beds across the country for severe ME patients, which meant there was no treatment. She also called attention to the fact there was no funding available for ME research, and that training for doctors was “extremely limited.”

She also raised shortcomings in National Institute for Care and Excellence (Nice) guidelines on ME, particularly about how nutrition support should be handled for severe patients.

Sean O’Neill said: “The coroner’s report is short, stark and shocking. She has found that NHS care for people with severe ME is ‘non-existent’, that medical training is ‘extremely limited’ and research budgets inadequate. She warns there will be further deaths from ME unless action is taken.

“The report is addressed directly to Wes Streeting, and I urge him to respond in a constructive and meaningful way. People with the post-viral illnesses ME and long Covid have been neglected for too long; if ministers are serious about tackling the problem of long-term sickness, they must improve care and treatment for sufferers.

“The coroner has also sent copies of her report to the NHS, the Medical Schools Council, the medical research funders and Nice. It is my plea, as a grieving and heartbroken father, that these bodies step up and take steps to prevent future deaths from this awful illness.”

Sarah Boothby, who separated from O’Neill when Maeve was four, said that her daughter was failed by every institution supposed to help her. “There were countless times when professionals should have intervened to prevent her premature death. Maeve knew it.”

She also warned that the coroner’s report would not prevent ME deaths nor reduce the growing number of adults severely disabled by ME. She said that reforms at the Royal Devon, which now allows ME patients to be artificially fed at home, needed to be implemented across the country and added: “no one at national level has made even a start.”

Wes Streeting, health minister Andrew Gwynne, the NHS, Nice and other bodies have a statutory 56 days to respond to Archer’s report. However, the coroner’s recommendations are not legally enforceable and at a hearing last month Archer said that she had issued reports in other cases but that “nothing was done.”

Sean O’Neill said that that the hearing revealed a “shameful” lack of action at senior levels to address ME, as three years after Boothby O’Neill’s death there were still no beds anywhere in the country set aside for the treatment of a severely ill patient.

Senior officials at the Royal Devon have stressed to NHS bosses the need for action but have been told that there is “no active work” to introduce specialist services.

A Department of Health spokeswoman said that “this is a heart-wrenching example of a patient falling through the cracks.

“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her. It is important that we learn the lessons from every prevention of future deaths report, and we will consider the report carefully before responding appropriately.

“We are committed to improving the care and support for all those affected, and we intend to publish a final delivery plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.