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A woman died from malnutrition due to severe chronic fatigue syndrome, a coroner has concluded.
Maeve Boothby-O’Neill suffered with severe myalgic encephalomyelitis (ME) for a decade before she died at home in Exeter in October 2021.
Sarah Boothby previously said her daughter's death was "wholly preventable" and that her local hospital failed in its duty of care - claims the Royal Devon and Exeter NHS Foundation Trust denied.
Following a 10-day inquest, Deborah Archer, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, said the 27-year-old had died from natural causes "because of ME".
The inquest heard Miss Boothby-O’Neill had suffered from fatigue since the age of 13, which became worse after she completed her A-levels.
It was told she had been admitted to the Royal Devon and Exeter Hospital three times in 2021 for treatment for malnutrition.
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.
'Benefit of hindsight'
In the last few months of her life, Miss Boothby-O'Neill was unable to chew food and had difficulty drinking because she was not able to sit up.
The coroner said a named healthcare professional should have been appointed to co-ordinate her care as soon as it was realised she required hospital admission.
Ms Archer said with the "benefits of hindsight", had medics known she would "deteriorate to the point of not being able to tolerate food or drink at all", an earlier feeding tube may have been given to her.
In her conclusion, the coroner said: "Whether this would have made a material difference to the outcome I cannot say.
"The disease for which there is no cure was not allowing her to take food and drink however administered, and the outcome may have been the same whatever the treatment given.
"For these reasons I cannot say these factors caused or contributed to her death."
'Starving to death'
Ms Archer said it was "unrealistic" for Miss Boothby-O'Neill to have been discharged home on the second occasion from hospital without a 24-hour care package in place.
"This factor did in my view contribute to her downward trajectory in the round but it was what Maeve and her mother wanted and wished for because Maeve could not tolerate the hospital environment," she said.
Miss Boothby was her daughter's full-time carer and struggled to look after her on her own, the inquest heard.
She previously told the coroner it had been "impossible for me to get enough calories into Maeve from a liquid diet".
Miss Boothby said: "Maeve was starving to death. She knew it, I knew it, her father knew it, we knew it, the GP knew it.
"How the hospital did not recognise this as the inevitable outcome of inadequate hydration and nutrition must be for them to answer."
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. It disagrees with the criticism that it failed its duty of care to Maeve or that there were missed or important opportunities."
Family handoutProf David Strain, who works at the trust, said he did not believe there was a "ward anywhere in the country at the moment that can provide the sort of care that is needed" for ME patients.
The inquest heard that 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.
Ms Archer told the court: "In making the findings I have, I hope that important lessons for future treatment of ME can be learned from her death.
"No doubt with the benefit of hindsight things will be different in many respects."
Andrew Gwynne, Minister for Public Health and Prevention, said it was a "heart-wrenching example of a patient falling through the cracks".
He said: “Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.
“I am committed to improving the care and support for all those affected, and we intend to publish a final delivery plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.”
A further hearing will take place on 27 September where the coroner will hear evidence about making a preventing future deaths report.
These are sent when a coroner thinks action is needed to protect lives.
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