A coroner has urged UK Health Secretary Wes Streeting to tackle the “non-existent” care available for people with severe ME or risk more deaths like that of Maeve Boothby O’Neill.
Devon coroner Deborah Archer, who heard Boothby O’Neill’s inquest, also called on the Government and NHS leaders to ensure there is more training for clinicians in the treatment of patients with myalgic encephalomyelitis, and additional funding for research into the condition.
In her report on the prevention of future deaths, believed to be the first of its kind involving ME, Archer wrote: “The investigation found that care for patients with severe ME, such as that suffered by Maeve, did not and continues to exist. and because she was placed in a ward where there was no expertise in her condition, the hospital stay was very difficult for her to tolerate.”
Boothby O’Neill, 27, died at her home in Exeter in October 2021 after living with ME, also known as chronic fatigue syndrome (CFS), for more than a decade. The coroner heard that no NHS or private bed in England was specifically set aside for the treatment of a patient with severe ME.
Archer wrote: “The evidence revealed matters of concern. In my opinion, there is a risk that deaths will occur in the future unless action is taken.”
She said: “It became clear that there were no specialist hospitals or hospices, beds, wards or other healthcare facilities in England for patients with severe ME. This meant that the Royal Devon and Exeter Hospital (where Boothby O’Neill was admitted) had no remit to treat Maeve and patients like her.
The coroner also said: “During the course of the investigation it became clear that there was currently no funding available for the research and development of treatments and for further learning to understand the causes of ME/CFS.”
Training for doctors on ME/CFS and its treatment was “extremely limited”, especially in relation to severe ME, she said.
Boothby O’Neill’s father, Sean O’Neill, a Times journalist, described the report as grim and shocking.
“The report is addressed directly to Wes Streeting and I urge him to respond in a constructive and meaningful way,” he said. “People with post-viral illnesses such as ME and long Covid have been neglected for too long; If ministers are serious about tackling the problem of long-term illness, they must improve care and treatment for patients.”
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He said the coroner had sent copies of her report to the NHS, the Medical Schools Council, medical research funders and Nice. “It is my plea, as a grieving and heartbroken father, that these bodies take action and take steps to prevent future deaths from this terrible disease.”
Boothby O’Neill’s mother, Sarah Boothby, said: ‘Maeve was a top scientist who loved to learn. She knew from living with the condition how ME affects every part of the body, including metabolism, but also how every institution that was supposed to help only failed her.
“There were numerous times when professionals should have intervened to prevent her premature death. Maeve knew. I knew it. ME is a post-infectious disease. Since Covid, there are hundreds of thousands of people who know.”