new Will Humphries, Southwest Correspondent Monday November 27 2023, 6.15pm,
The Times Health Law NHS The Times journalist Sean O’Neill with his daughter Maeve Boothby-O’Neill The Times journalist Sean O’Neill with his daughter Maeve Boothby-O’Neill SEAN O’NEILL
The NHS’s inability to care for seriously ill patients with severe cases of the debilitating disease ME requires urgent attention, a hospital chief has told an inquest. Dr Anthony Hemsley, medical director of the Royal Devon & Exeter hospital, revealed in written evidence there was no NHS guidance to staff and no specialist services anywhere in the country to handle acute ME cases. Hemsley said the “gap in service” needed to be rectified and “action is required at the highest level.” Maeve Boothby-O’Neill, the daughter of the Times journalist Sean O’Neill, died two years ago after becoming bedbound and finding the simple act of chewing exhausting. She had three admissions to the Royal Devon & Exeter Hospital before her death and an inquest will be help
Before her death at home, aged 27, Boothby-O’Neill refused a fourth admission to hospital after feeling clinicians were not helping her and her symptoms were only getting worse under their watch. O’Neill, speaking at a pre-inquest review hearing, told Exeter coroner’s court that Anthony Hemsley, the medical director of the NHS trust, 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’s court: “When Maeve concluded that the hospital was unable and indeed unwilling to provide the treatment she needed, she was right.
“Imagine that this was a different illness. Imagine a hospital saying that it was not commissioned and therefore not resourced to provide inpatient treatment to those with severe cancer, those with severe heart conditions, those with another severe disease. It is quite impossible to conceive.” Boothby-O’Neill’s condition deteriorated sharply in the last seven months of her life. Her GP reported her death to the local coroner, saying she was doing so because of the complexity of the case. The GP, who was committed to her care, wrote: “Several doctors involved in her care stated they do not believe ME is a medical problem.” It is estimated that about 250,000
Campaigners have fought to correct a misconception that ME, also known as chronic fatigue syndrome, is a psychological or behavioural illness but its causes and the best treatments remain poorly understood. Patients have fluctuating symptoms, including prolonged fatigue, dizziness, muscle pain, gastrointestinal problems and brain fog. In severe cases they need to be tube-fed. Boothby-O’Neill’s family want Deborah Archer, assistant coroner for Plymouth, Torbay and South Devon, to hold an Article 2 inquest to consider whether systemic or policy based failures could have caused her death. Article 2 of the European Convention on Human Rights protects people’s “right to life”. If someone has died while under the care of the state then Article 2 can be engaged, which allows the coroner to look deeper at the context and background of the death than in a normal inquest. 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.”
During the pre-inquest review hearing, Archer told the family the inquest could not take on the role of a public inquiry. “The focus is to look at the specific inquest of Maeve and then to look at whether I should write a report to prevent further deaths,” she said. “This isn’t a public inquiry, so we aren’t looking at issues like government funding, policies and the national or international treatment of ME. Those are matters that are beyond the scope of an inquest.” Archer said she would make a decision on whether to allow an Article 2 inquest in the coming days. Health Law NHS..................................................
