https://www.telegraph.co.uk/news/20...-oneill-nhs-staff-treated-blame-condition-uk/
NHS staff treated woman who died from ME ‘as if she was to blame’
Inquest into death of Maeve Boothby O’Neill hears that chance to provide life-saving treatment may have been missed
By
Patrick Sawer, Senior News Reporter 24 July 2024 • 7:47pm
NHS hospital staff treated a young woman who died from ME as though she was to blame for her condition, a leading expert in the illness has claimed.
Dr William Weir, a Harley Street consultant, said
Maeve Boothby O’Neill may have missed the chance of life-saving treatment in part because of the “apathy” of consultants at the Royal Devon and Exeter Hospital (RD&E), an inquest heard.
Ms Boothby O’Neill died aged 27 in October 2021 after years of slow and crippling decline from
myalgic encephalomyelitis (ME), which she contracted in her teens and left her unable to function normally, feed herself, or chew or swallow.
Three weeks before Ms Boothby O’Neill’s death, Dr Weir wrote an excoriating letter to the chief executive of North Devon Healthcare Trust claiming doctors had an “outdated understanding” of the debilitating condition and accused staff of treating her as if her illness was “self-inflicted” and she was to blame for her inability to function normally, the inquest heard.
But Dr Weir’s letter went unanswered, leading to fears by Ms Boothby O’Neill’s family that his warnings may have been ignored.
Dr Weir, who had been approached by Dr David Strain, the RD&E’s own ME lead to help him fight for better treatment for Ms Boothby O’Neill, said in his letter that a “considerable portion” of the staff at the hospital, including some consultants, “still hold on to the now outdated understanding that ME has psychological causes”.
Addressing the letter to Dr Suzanne Tracey, the trust’s chief executive, he said: “It’s also apparent from the way Maeve was treated during her last admission that her illness was regarded by some of the RD&E staff as her fault and that her immobility was self-inflicted.”
Dr Weir, who had examined Ms Boothby O’Neill in March of that year, added: “Not unreasonably she is reluctant to be readmitted to the RD&E despite her precarious physical condition. Dr [David] Strain is therefore facing an uphill task in arranging readmission, not least because of the apathy of some of his colleagues to what will almost certainly be life-saving treatment.”
Maeve Boothby O'Neill was described at the inquest as an 'intelligent young lady'
By the time of Dr Weir’s letter Ms Boothby O’Neill had grown reluctant to undergo the Total Parenteral Nutrition (TPN) treatment which Dr Strain and Dr Weir were both recommending, in which all nutrition is administered intravenously through a tube.
She refused the treatment outright a few weeks later, shortly before her death on Oct 3, because she felt that while TPN would keep her alive it would not help her “to live” and instead prolong her agony.
Ms Boothby O’Neill said that she might have accepted the treatment, which has been seen to work with some severe ME patients, had it been offered by the hospital earlier in her illness.
Medical ‘dogma’
In his letter, Dr Weir urged Dr Tracey to “fully support” his colleague Dr Strain’s efforts to obtain what he thought was the best treatment for Ms Boothby O’Neill.
“I am not exaggerating the issue when I say that this [TPN] may well save Maeve’s life,” he said.
Dr Weir added: “At the same time you will need to tackle head-on the dogma concerning the cause of ME/CFS [chronic fatigue syndrome] that some of his colleagues are still adhering to.”
Dr Tracey, who was responsible for the running of RD&E but has since resigned, had yet to reply to him, he said.
Dr Weir told the inquest at Exeter Coroner’s Court that the
NHS was still afflicted by outdated and dangerous attitudes towards ME, which affects an estimated 250,000 people in the UK, leaving them exhausted, beset by “brain fog” and unable to perform simple tasks.
In response to a question from
her father Sean O’Neill, a journalist with The Times newspaper, Dr Weir told the hearing: “There’s a dogma that this condition is psychological and until that dogma is buried it will be very difficult to treat ME patients properly.
“There are still plenty of professionals out there who still adhere to this dogma and that inhibits a true understanding of this condition.”
Sarah Boothby, Maeve Boothby O'Neill's mother, was among those attending the inquest Credit: Lee Thomas
Life ‘could have been saved’
Giving evidence on the third day of the inquest, Dr Weir was asked by Mr O’Neill whether he felt her life could have been saved if “appropriate nutrition” had been given to her through intravenous means.
Dr Weir responded: “I’d have to say yes. I’ve got two patients who are currently holding their own. We do know that.”
He later told the hearing that he felt the 27-year-old, who he described as an “intelligent young lady”, might have accepted TPN had it been presented to her properly.
“Maeve needed to be persuaded that TPN was the next step,” he said. “The goal was to provide her with a level of nutrition.”
On Tuesday, Dr Strain, a consultant and ME expert who reviewed her case for the RD&E,
warned the inquest there would be “more Maeves” if the NHS did not drastically improve its approach to the condition.
He said that even now there are no hospital wards in the country specifically designed to treat patients suffering from ME and that “the level of research for this condition is woefully inadequate”.
A spokesman for the Royal Devon University Healthcare NHS Foundation Trust, which was formed out of RD&E and North Devon Healthcare Trust, said: “As the inquest is still ongoing it would not be appropriate for us to comment at this time.”
