A woman with ME wrote to her GP pleading for help to “get enough food to live” and expressing despair at not getting the care she felt she needed when she was admitted to hospital, an inquest heard.
Maeve Boothby O’Neill, who had severe ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) for several years, was admitted three times to the Royal Devon and Exeter hospital but felt doctors there did not take her illness seriously.
Four months before she died, aged 27, Boothby O’Neill wrote to her GP: “I know you’re doing your best for me but I really need help with feeding. I don’t understand why the hospital didn’t do anything to help me when I went in.
“I am hungry. I want to eat. I have been unable to sit up or chew since March [three months before]. The only person helping me eat is my mum. I can’t get enough calories from a syringe. Please help me get enough food to live.”
At the start of her inquest in Exeter, it was revealed that Boothby O’Neill’s GP, Dr Lucy Shenton, who had worked hard to get her help, would not appear to give evidence because she had suffered post-traumatic stress disorder over the case.
The coroner, Deborah Archer, said: “She felt stress and Maeve’s tragic death had taken a very significant toll on her.”
Boothby O’Neill had lived with severe ME/CFS for several years, but it 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 her GP surgery tried to get help for her and she was admitted to the Royal Devon three times. On the first occasion, in March 2021, she was discharged on the same day after a doctor said they could not find “anything medical” wrong.
As Boothby O’Neill’s condition continued to deteriorate, Shenton wrote to NHS colleagues and social services asking for someone to “get stuck in” and not treat her patient as a “medical outlier”.
She was admitted to hospital again in May 2021. When she was discharged, the specialist CFS service told her there were “long waiting times” for patients to be seen. Boothby O’Neill was admitted for a third time in the summer of 2021.
After she was discharged, Shenton visited Boothby O’Neill at home and wrote in her notes: “Lying still and flat in bed in dark room. Unwashed.” She added: “Doesn’t want to go to hospital as ‘always gets worse when goes in’.”
She also wrote: “Doesn’t want to die.”
On 7 September Shenton wrote: “If I could do anything I would, it is breaking my heart.” On 1 October she recorded: “Her confidence and faith in the NHS has been very low for quite a while because of the sense that people don’t believe her.”
Boothby O’Neill died in October 2021. Giving evidence, Shenton’s GP colleague, Dr Paul McDermott, said the surgery 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 on the same day when she was first admitted. “I was hoping someone would take it on and go into more depth with it. I realised as a GP we had run out of all options. We were sending her in [to hospital] then boom she comes out the same day.”
Asked if there was any training for GPs on ME/CFS, McDermott said: “There may be e-learning, maybe.” He said he had undergone no formal teaching on ME/CFS.
Boothby O’Neill’s family believe the two-week inquest could be a landmark case highlighting shortcomings in the medical profession’s approach to ME/CFS.
In a pen portrait, Boothby O’Neill’s mother, Sarah Boothby, said she was an “exceptional child” who loved learning languages and wanted to travel overseas. In an extract of a statement read out during the inquest, she said Shenton had told her she had “never seen anyone so poorly treated by the NHS as Maeve was”.
Her father, Sean O’Neill, a Times journalist, said she was a “special big sister” to his two other children.
