A woman with acute spinal cord encephalopathy wrote to her GP asking for help to “have enough food to live” and expressing her despair at not receiving the care she felt she needed when she was admitted to hospital, an inquest heard.
Maeve Boothby O’Neill, who had suffered from severe chronic fatigue syndrome (myalgic encephalomyelitis) for several years, was admitted to the Royal Devon and Exeter Hospital three times but felt doctors did not take her illness seriously.
Four months before his death, aged 27, Boothby O’Neill wrote to his GP: “I know you are doing your best for me, but I really need help with my eating. I don’t understand why the hospital didn’t do anything to help me when I came in.”
“I’m hungry. I want to eat. I haven’t been able to sit or chew since March. [three months before]. The only person who helps me eat is my mother. I can’t get enough calories from a syringe. Please help me have enough food to live.
At the start of his inquest in Exeter, it was revealed that Boothby O’Neill’s GP, Dr Lucy Shenton, who had worked hard to get him help, would not come forward to give evidence because she had suffered post-traumatic stress disorder as a result of the case.
Coroner Deborah Archer said: “She was feeling stressed and Maeve’s tragic death had taken a huge toll on her.”
Boothby O’Neill had suffered from severe chronic fatigue syndrome (ME/CFS) for several years, but the condition became more acute in 2021 when she was often confined to bed and found it almost impossible to get up, wash, eat or drink.
Her family and GP tried to get her help and she was admitted to the Royal Devon three times. The first time, in March 2021, she was released the same day after a doctor told her he had found “nothing medically wrong”.
As Boothby O’Neill’s condition continued to deteriorate, Shenton wrote a letter to colleagues in the NHS and social services asking that someone “step in” and not treat his patient as a “medical outlier”.
She was admitted to hospital again later in May. When she was discharged, the specialist mental health service told her there were “long waiting times” for patients to be seen. Boothby O’Neill was admitted a third time in the summer of 2021. She died in October.
Giving evidence, Dr Paul McDermott, a GP and Shenton’s colleague, said the practice did not have specialist knowledge of ME/CFS. He said: “We needed help. We all needed help. Maeve needed help.”
He told the inquest he was “slightly shocked” that Boothby O’Neill was discharged from hospital on the same day she was admitted. “I was hoping that someone would take charge of the situation and realise that as GPs we had run out of options.”
Asked whether there was any training for GPs on ME/CFS, McDermott said: “There could be some online learning, perhaps.” He said he had not had any formal training on ME/CFS.
Boothby O’Neill’s family believe the two-week inquest could be a landmark case highlighting failings in the medical profession’s approach to ME/CFS.
In a profile, her mother, Sarah Boothby, said she was an “exceptional child” who loved learning languages and wanted to travel abroad. Her father, Sean O’Neill, a journalist at The Times, said she was a “special big sister” to his two other children.
