A 27-year-old woman with chronic fatigue syndrome died just months after asking her doctor for “enough food to live on”, an inquest heard.
Maeve Boothby-O’Neill, who was diagnosed with myalgic encephalomyelitis (MS), wrote to her doctor, Lucy Shenton, in June 2021, begging her for help with eating as she was hungry and wanted to eat.
She was becoming weaker, had not been able to feed herself since March of that year and was confined to her bed, with her mother looking after her, the inquest into her death heard.
Mrs Boothby-O’Neill explained to her GP on 18 June: ‘I haven’t been able to sit up or chew since March and the only person who helps me eat is my mum.
“I can’t get enough calories from a syringe. Please help me get enough food to live.”
In July, she was unable to read, watch television or talk, and would only get out of bed to go to the bathroom, according to medical records.
Boothby-O’Neill died at home in Exeter in October 2021, and the inquest in the city is looking into his care from the start of that year until his death.
She wanted to be treated at home and “reluctantly” agreed to the hospital stay.
Woman sent home from hospital three times
Boothby-O’Neill was admitted to the Royal Devon and Exeter Hospital three times, but was discharged each time and sent home.
Since the age of 13 he suffered from fatigue, which worsened after completing his A-levels, and he later struggled to maintain “any normality due to exhaustion”.
Her mother, Sarah Boothby, said she was an “exceptional” child and a grade A student, but after finishing school she was “too affected by me to travel or get a place at university”.
Mother attacks daughter’s care
Mrs Boothby wrote to the GP practice manager in April 2021 wanting to know what “went terribly wrong” with her daughter’s care.
She said: “Since March 10, 2021, I have been the only person caring for a person unable to sit, stand or chew.
“This is a long-term chronic condition with no prognosis or treatment protocol. What is the plan for hydration, fluids, nutrition and transfers to a bedside toilet in the community?
“You arranged to speak to me on the phone before the pandemic in February 2020. You did not call as agreed and when I called the surgery they told me you were 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 MS,” Dr. Paul McDermott, a colleague of Dr. Shenton, said at the hearing.
He said he was “a bit shocked” that, having admitted her to hospital in March 2021, she was sent home the same day.
“I am very aware that we were in the pandemic and that the hospital was full of COVID-19 patients, but I was surprised that she was discharged that day,” Dr. McDermott said.
The investigation continues and is expected to last fifteen days.
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