A 27-year-old who died after suffering from (ME) for years was forced to battle the NHS as well as the disease, a health minister has said. died at home in October 2021 after years of slow decline from the chronic fatigue disease severe ME. The illness, which she contracted in her teens, left her unable to function normally, stand or sit up, feed herself, chew or swallow.
An inquest into her death found that a “ ” led to failings in the treatment Ms Boothby O’Neill received, with her family struggling to find her proper care from the NHS. Devon Assistant Coroner Deborah Archer ruled that Ms Boothby O’Neill had caused by severe ME after her hospital was unable to treat the condition. She said there had been “failings” in the way medical staff consulted each other over the best treatment for Ms Boothby O’Neill to receive, but that this is unlikely to have changed the ultimate outcome of her condition.
The Government has now pledged to improve the care offered to ME patients. Andrew Gwynne, the Minister for Public Health and Prevention, said in response to Friday’s findings: “My deepest sympathies go out to Maeve’s family and friends in this tragic case. Every patient deserves to have their condition understood and treated to the highest standard, and 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.” Ms Boothby O’Neill’s father, Sean O’Neill, a journalist at The Times, said his “bright, loving and beautiful” daughter “fell into a huge hole in our healthcare system” and that urgent lessons had to be learnt by the NHS. He said: “The inquest heard that none of the medical staff treating her had any training or received any education in treating severe ME.
. At the end of her life palliative care was delayed because of that disbelief.” The two-week inquest heard there is no known cause or cure for the disease and no established or accepted way of treating it.
Ms Boothby O’Neill - who the inquest found had “full capacity” to make her own decisions - was admitted three times to Royal Devon & Exeter Hospital (RD&E) over the course of 2021, but she refused a fourth admission because no treatment was available to improve or even alleviate her condition. Handing down a narrative verdict, Ms Archer said: “There was a lack of understanding within the body of staff who treated Maeve in how her envelope of energy was being depleted by the way she was being treated. But it’s a disease with no cure.
It’s not possible for me to say on the evidence if any treatment would have helped.” The inquest heard that clinicians at RD&E disagreed about giving Ms Boothby O’Neill vital nutrition through nasal nasogastric (NG) or nasojejunal tubes because of the danger she could choke or suffer a fatal infection, as she had no energy to sit up. Some felt the benefits would outweigh the risk while others feared it could hasten her death.
Similar doubts were expressed by some doctors with regards to fitting Ms Boothby O’Neill with a total parenteral nutrition (TPN) tube that can administer nutrients straight to the heart, which carried the risk of sepsis. Ms Archer criticised the failure to alert the RD&E’s own ME specialist that Ms Boothby O’Neill had been admitted in March 2021 and was seriously ill. She said all the clinicians were “doing their best to help” but that this failure “resulted in Maeve using up her precious energy envelope which set her on a final downward trajectory”.
However, she added: “A disease for which there was no cure was not allowing her to take food and drink and the outcome may have been the same however it was administered.” Ms Archer also criticised the decision to discharge Ms Boothby O’Neill from RD&E in early June 2021, stating: “Maeve should have stayed in hospital on 3rd June, when other options could have been considered,” adding that home care was “not what she needed” and that this “contributed to her downward trajectory”. However, the coroner added: “It was what Maeve and her mother wanted because she could not tolerate the hospital environment any longer.
To say what would have happened if she’d stayed in hospital would be mere speculation.” During her third admission, Ms Boothby O’Neill began vomiting when being fed by NG syringe and eventually refused to take it. Ms Boothby O’Neill, who was described by Ms Archer as “bright, opinionated, self-aware and intelligent”, refused to be readmitted to hospital shortly before her death to receive intravenous TPN feeding, as “she did not want simply to be kept alive” with .
Ms Archer will hold a hearing at the end of September to consider whether to produce a Prevention of Future Deaths of Report containing wider recommendations about the NHS’s treatment of patients suffering from ME. Mr O’Neill said he hoped that his daughter’s death would lead to fundamental changes in the way the condition was viewed by doctors and the medical establishment. He said: “The coroner was told there were , not even a bed anywhere in the NHS for treating severe ME.
There were no policies, protocols or guidelines for the treatment of ME in 2021 and there are still none today. “Imagine that being the case for any other serious, life-limiting or life-threatening illness. Imagine a doctor telling a Parkinson’s sufferer or a cancer patient that they had no idea how to treat their illness.
This is the very definition of a systemic failing. It is not about the failings or negligence of individuals or a single hospital. It is about the entire system that should protect, or at least try to protect, those with Severe ME.
” Mr O’Neill added: “The health and social care system failed Maeve. It should not be allowed to fail others in future. There must be - starting with medical education, greatly improved research and specialist care provision for the most dangerously ill.
” An NHS spokesperson said: “Our thoughts remain with Maeve’s family. “The powerful testimonies given as part of Maeve’s inquest make clear that improvements are needed within the health service and across society to increase understanding and awareness of ME/CFS, and to help ensure that patients and their families are listened to and receive the care they need, in line with NICE guidance. “Over the coming months, we will work closely with the government, patients and clinicians on the final delivery plan for ME/CFS to achieve these ambitions.
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