There needs to be properly funded research into people suffering from myalgic encephalomyelitis (ME) and specialist services for patients, a GP who treated a young woman with the condition told her inquest.
Dr Lucy Shenton said doctors needed more help to treat patients like Maeve Boothby-O’Neill, 27, who had the condition, also known as chronic fatigue syndrome, for a decade. died at home in October 2021.
The inquest in Exeter heard Boothby-O’Neill was admitted to the Royal Devon and Exeter Hospital three times that year for treatment for malnutrition. In the last few months of her life, she was bedridden, unable to chew food and had difficulty drinking because she could not sit up straight.
The inquest heard she was placed on a nasogastric tube for artificial nutrition while in hospital, but due to complications it was removed. An alternative – parenteral nutrition through a vein – was rejected because it would be unsafe in her case.
Shenton, who took over Boothby-O’Neill’s care in April 2021, said: “In terms of severe ME, there needs to be more funding and research into ME to provide the evidence and guidelines for clinicians to work from.
“There must be somewhere within the NHS providing specialist care for patients with severe ME and an easy mechanism to access that provision.
“Although Maeve had severe ME, some of the difficulties in her care would apply to any complex patient with customized needs. From a patient safety point of view I was trying to manage Maeve while having other complex patients on top of my normal GP workload.
“Although Maeve’s case was unique, GPs managing complex cases with little support and no time-out allocated in their working day for these cases are commonplace.”
Shenton did not give evidence in person due to health reasons, but provided written answers to questions.
She said she did not remember telling Boothby-O’Neill’s mother, Sarah Boothby, after her death that she had “never seen anyone so badly treated by the NHS” as her daughter.
“If I did say that, I apologize because I don’t think that would have been a helpful comment to make to a grieving family member,” Shenton said.
“Maeve knew that since her formal diagnosis in 2012 she had been steadily deteriorating and by April 2021 she felt it was likely that she would rapidly deteriorate and die. I was worried that my earlier expressions of faith in the NHS could be seen as another example of someone not listening or believing Maeve.
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Shenton said during the time she was Boothby-O’Neill’s GP, only one consultant expressed doubt that ME was a physical illness.
“Medicine is driven by the evidence and the lack of evidence and therefore guidelines around ME, and especially severe ME, make decision-making and management more complicated.”
Shenton said many of the health professionals involved in Boothby-O’Neill’s care were not doctors and their “lack of understanding” of severe ME may have been relevant.
The inquest has been adjourned until August 9, when the coroner is due to record their conclusions.
