Devon woman with ME asked her GP to help her ‘get enough food to live’, study finds
A woman with acute ME wrote a letter to her GP pleading for help to ‘get enough food to live’ and expressing her despair at not receiving the care she needed when she was admitted to hospital, an inquest heard.
Maeve Boothby O’Neill, who had suffered from severe ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) for several years, was admitted to the Royal Devon and Exeter Hospital three times but felt that doctors there did not take her illness seriously.
Four months before she died, Boothby O’Neill, aged 27, wrote to her GP: “I know you are doing your best for me, but I really need help with feeding. I don’t understand why the hospital did nothing to help me when I came in.
“I am hungry. I want to eat. I have not been able to sit up or chew since March (three months ago). The only one who helps me eat is my mother. I cannot get enough calories from a syringe. Please help me eat enough to live.”
At the start of the inquiry in Exeter it was revealed that Boothby O’Neill’s GP, Dr Lucy Shenton, who had worked hard to get her help, did not want to give evidence because she had suffered from 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 been suffering from severe ME/CFS for several years, but in 2021 the situation became worse. She was often bedridden and could barely get up, wash, eat or drink.
Her family and her GP practice tried to get her help and she was admitted to the Royal Devon three times. The first time, in March 2021, she was discharged the same day after a doctor said they could find “nothing medically” wrong.
As Boothby O’Neill’s condition continued to deteriorate, Shenton wrote to colleagues in the NHS and social services asking them to please stop treating her patient as a ‘medical outsider’.
Later in May, she was readmitted to hospital. When she was discharged, the specialist CFS service told her there were “long waits” for patients to be seen. Boothby O’Neill was readmitted for a third time in the summer of 2021. She died in October.
Shenton’s GP colleague, Dr Paul McDermott, gave evidence and said the operating theatre lacked specialist knowledge of ME/CFS. He said: “We needed help. We all needed help. Maeve needed help.”
He told the inquiry he was “a bit shocked” that Boothby O’Neill was discharged on the same day she was first admitted. “I was hoping that someone would step up and realise that as GPs we were out of options.”
When asked if there was any training for GPs on ME/CFS, McDermott replied: “There could be e-learning, maybe.” 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 that exposes the failings in the medical profession’s approach to ME/CFS.
In a pen portrait, her mother, Sarah Boothby, said she was an “exceptional child” who enjoyed learning languages and travelling abroad. Her father, Sean O’Neill, a Times journalist, said she was a “special big sister” to his other two children.