A 27-year-old woman with chronic fatigue syndrome died a few months after she asked her GP for “enough food to live”, an inquest has heard.
Maeve Boothby-O’Neill, who had been diagnosed with myalgic encephalomyelitis (ME), wrote to her doctor, Lucy Shenton, in June 2021 begging her for help with feeding as she was hungry and wanted to eat.
She had been getting weaker, was unable to feed herself from March that year, and had been confined to bed, with her mother caring for her, the inquest into her death heard.
Ms Boothby-O’Neill explained to the GP on 18 June: “I have been unable to sit up or chew since March and the only person helping me eat is my mum.
“I cannot get enough calories from a syringe. Please help me get enough food to live.”
By July, she was unable to read, watch television or engage in conversations, and only got out of bed to use the toilet, according to medical notes.
Ms Boothby-O’Neill died at home in Exeter in October 2021, and the inquest in the city is looking at her care from the start of that year until her death.
She had wanted to be treated at home and “reluctantly” agreed to hospital admissions.
Woman sent home from hospital three times
Ms Boothby-O’Neill had been admitted three times to the Royal Devon and Exeter Hospital, but was discharged each time and sent home.
Since she was 13, she had been suffering from fatigue, which became worse after she completed her A-levels, and later struggled to maintain “any normality due to fatigue”.
Her mother Sarah Boothby said she was an “exceptional” child and an A-grade student, but after finishing school she was “too severely affected by ME to go travelling or take up a place at university”.
Mother hit out at daughter’s care
Ms Boothby wrote to the GP practice manager in April 2021 wanting to know what had “gone badly wrong” with the care of her daughter.
She said: “Since 10 March 2021, I have been the only person providing care for a person unable to sit, stand or chew.
“This is a long-term chronic condition without prognosis or treatment protocol. What is the plan for hydration, liquid, nourishment and transfers to a bedside commode in the community?
“You had arranged to speak by phone to me before the pandemic in February 2020. You didn’t call as arranged then and when I rang the surgery, they told me you were off sick.
“This case was urgent then and it is very urgent now.”
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Doctor’s ‘shock’
Ms Boothby-O’Neill “ticked all the boxes for very severe ME”, Dr Paul McDermott, a colleague of Dr Shenton, told the hearing.
He said he was “slightly shocked” that having admitted her to hospital in March 2021, she was sent home the same day.
“I am very aware we were in the pandemic and the hospital was full of COVID-19 patients but I was surprised she was discharged that day,” Dr McDermott said.
The inquest continues and is scheduled to last a fortnight.