A young woman died months after begging her GP for help with her chronic fatigue syndrome, an inquest heard.
Maeve Boothby-O’Neill, 27, had written to her doctor asking for help with feeding as she was hungry.
Ms Boothby-O’Neill had been diagnosed with myalgic encephalomyelitis (ME). She died at home in Exeter, Devon, in October 2021.
The inquest, which is scheduled to last two weeks, continues.
The hearing in Exeter heard that she had told her GP, Dr Lucy Shenton, in June 2021: “Dear Dr Shenton, I know you are doing your best for me, but I really need help with feeding.
“I do not understand why the hospital did not do anything to help when I went in. I am hungry, I want to eat.”
She continued: “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.”
She had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels, and later struggled to maintain “any normality due to fatigue”.
The hearing is focusing on her care from January 2021 until her death.
According to medical notes, by July she was unable to read, watch TV or engage in conversations, and was only getting out of bed to use the toilet.
She was also unable to chew food and had difficulty drinking because she was not able to sit up.
Ms Boothby-O’Neill had been admitted three times to the Royal Devon and Exeter Hospital but was discharged each time and sent home, the inquest was told.
Dr Shenton’s colleague, Dr Paul McDermott, said he was “slightly shocked” that, having admitted her to hospital in March 2021, she was sent home the same day.
Ms Boothby-O’Neill’s mother, Sarah Boothby, wrote to the GP practice manager in the April wanting to know what had “gone badly wrong” with the care of her daughter.
“Since 10 March, 2021, I have been the only person providing care for a person unable to sit, stand or chew,” she wrote.
“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 did not 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.”
Ms Boothby described her daughter as an “exceptional” child and an A-grade student.
Her father, Sean O’Neill, a journalist with The Times newspaper, added: “I especially wanted it to be remembered that she was a special big sister to Danny and Lily.
“Her death has been hard for Danny and Lily to understand.
“Illness stopped them knowing her better, but they knew her love and on her death bed she remembered them.”
