Doctors treating ME patient relied on nutritionist with no expertise in condition, inquest hears
Doctors treating a severely ill ME patient relied on a nutritionist with no expertise in the debilitating condition, an inquest has heard.
Dr Ovishek Roy, a consultant gastroenterologist and nutrition specialist at the Royal Devon & Exeter Hospital (RD&E), was closely involved in team discussions about Maeve Boothby O’Neill’s deterioration before her eventual death from ME at the age of 27, in October 2021.
She had been robbed of any energy and left unable to function normally, feed herself, chew or swallow by the crippling condition myalgic encephalomyelitis (ME), which she contracted in her teens.
But Dr Roy told an inquest into her death that, although he was asked to advise on how best to reverse Ms Boothby O’Neill’s rapid weight loss, he had “no expertise in nutrition in the context of severe ME”.
Exeter Coroner’s Court heard that he also admitted to Ms Boothby O’Neill’s family GP, Dr Lucy Shenton “his complete lack of expertise with complex nutrition in severe ME”, despite his continued involvement in the mutli-discipline team overseeing her care during three admissions to hospital and as an outpatient at home in 2021.
During her treatment Dr Roy was asked to advise whether Ms Boothby O’Neill should receive the nutrition she desperately needed though intravenous (IV) methods, either through the nose or directly into her bloodstream by Total Parenteral Nutrition (TPN). A nasal tube was tried at one stage, without much success, but he warned against using TPN as too risky.
Asked by Coroner Deborah Archer whether he had ever treated someone with severe ME before Ms Boothby O’Neill he said: “Not to this degree. Not severe ME.” When Ms Archer asked whether he had any specialism in ME, Dr Roy replied: “No”.
Answering questions directly from Ms Boothby O’Neill’s father Sean O’Neill, the consultant admitted he had received little in-depth training on the treatment of ME, but added that he had “learnt a lot” from his daughter’s case which he would “take forward” when dealing with other severe ME sufferers.
Close to tears, Mr O’Neill, a journalist at The Times newspaper, told the hearing: “I’m somebody who has had a huge amount of faith in medicine and I’m really puzzled why something could not be done for Maeve.”
Addressing Mr O’Neill directly Dr Roy said: “I do believe that everyone involved tried hard and acted in her best interests. I do believe they tried their best. This was very, very sad and we tried very hard.”
Another senior consultant at RD&E, who was involved in treating Ms Boothby O’Neill on the Lowman eating disorder ward, also admitted not having had any special training in ME.
Dr Roderick Warren, consultant physician in diabetes and endocrinology, told the hearing he had not received such training and added: “I’m not even aware there’s special training in ME within the NHS.”
When asked, he said he did not know whether ME was a physical or psychological condition, but said the “more important question is what does the person with ME need”.
Dr Warren added: “You can not know what causes a condition and still take it seriously.”
Dr Roy told the hearing that his advice that Ms Boothby O’Neill should have been admitted to a neurological rather than an eating disorder ward was ignored by the senior nursing team, an experience shared by Dr David Strain, the RD&E lead on Covid and advisor on ME, who gave evidence earlier in the week.
The consultant’s emphasis in his patient notes and correspondence on the psychological aspect of ME appeared to be at odds with the view of experts heard by the inquest earlier in the week, who maintained it should not be regarded as such and that this was an “outdated” and unhelpful notion.
In his witness statement, read to the court, Dr Roy stated: “I suggested the need for robust psychological support” throughout Ms Boothby O’Neill’s treatment at RD&E, and said that he had “suggested psychiatric input and possible sectioning” – though he added that he was again not advising this “from any position of authority”.
In June he wrote to a senior dietician: “I agree that the crucial decision making will be related to her complex ME and psychosocial needs.”
On September 22, 2021, a week before Ms Boothby O’Neill’s death, he told Dr Shenton, that “it was unclear to me how much of the feeding difficulty was primarily ME-related vs environmental and psychological factors.”
Mr O’Neill and Ms Boothby O’Neill’s mother Sarah Boothby have fought to counter the stigmatisation of ME patients by medical professionals, with increasing numbers of patients and their families coming forward to tell of their struggle to have their condition treated seriously and obtain specialist care.
Three weeks before Ms Boothby O’Neill’s death, Dr William Weir, a Harley Street consultant and leading ME expert, wrote an excoriating letter to the chief executive of North Devon Healthcare Trust claiming doctors had an “outdated understanding” of the debilitating condition.
He also 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.