A young woman died from malnutrition due to having severe chronic fatigue syndrome, a coroner has concluded.
Deborah Archer, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, said Maeve Boothby-O’Neill, 27, had died from natural causes “because of severe myalgic encephalomyelitis (ME)”.
Miss Boothby-O’Neill had suffered with ME for a decade before she died at home in Exeter in October 2021.
An inquest in Exeter heard Miss Boothby-O’Neill had been admitted to the Royal Devon and Exeter Hospital three times that year for treatment for malnutrition.
The 10-day hearing focused on the last few months of her life, by which time she was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit up.
She had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels.
Her mother, Sarah Boothby, was her full-time carer who struggled to look after her daughter on her own.
In June, Miss Boothby-O’Neill had written to her GP asking for help, telling Dr Lucy Shenton: “I don’t understand why the hospital didn’t do anything to help when I went in. I am hungry, I want to eat.
“Please help me get enough food to live.”
She had been admitted three times to hospital for help with her feeding.
A nasogastric tube had been removed due to her vomiting while she was not considered suitable for total parenteral nutrition feeding.
Doctors said they did all they could to help Miss Boothby-O’Neill, who had mental capacity and wished to be treated at home – trying to persuade her to stay at the hospital.
Dr Ovishek Roy, a consultant gastroenterologist, told the hearing: “I do believe that everyone involved tried very hard to get the basics right, act in her best interest, discuss and get advice when needed, and so on.
“This was a desperately sad case from the very beginning, and I got involved and remained involved because it was so challenging.”
The inquest heard there was a severe shortage of specialist hospital wards to treat around ME patients.
Maeve Boothby-O’Neill had suffered with myalgic encephalomyelitis (ME) for a decade before she died at home in Exeter in October 2021 (Family handout/PA)
Professor David Strain, who works at the Royal Devon and Exeter NHS Foundation Trust, said: “Even in the best-case scenario, I don’t believe there is a ward anywhere in the country at the moment that can provide the sort of care that is needed.”
Dr Willy Weir, an expert in ME, had written to the chief executive of the hospital a month before Miss Boothby-O’Neill died about her case and the “outdated” views some doctors held about the disease.
“It is also apparent from the way Maeve was treated during her last admission that her illness was regarded by some of the hospital staff as her fault and her immobility was self-inflicted,” he wrote.
“At the same time, you will need to tackle head on the dogma concerning the cause of ME/CFS that some colleagues are still perversely adhering to.”
Miss Boothby told the hearing she believed her daughter’s death was preventable.
“By this stage Maeve was starving to death. She knew it, I knew it, her father knew it, we knew it, the GP knew it,” she said.
“How the hospital did not recognise this as the inevitable outcome of inadequate hydration and nutrition must be for them to answer.
“After Maeve died, GP Dr Lucy Shenton told me she had never seen anyone so badly treated by the NHS.”
Rhys Hadden, representing the hospital trust, said his client did not accept all of Miss Boothby’s evidence.
“The hospital does not consider that Maeve’s death was preventable,” he said.
“It disagrees with the criticism that it failed its duty of care to Maeve or that there were missed or important opportunities.”