A woman died of MS after her GP warned her he had “never seen anyone treated so badly by the NHS”, an inquest heard.
Maeve Boothby O’Neill, 27, was left bedridden and barely able to move in the final months of her life due to the severity of her myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).
His family believes his death in October 2021 exposed “a major systemic failure” of the health service to understand and treat severe cases of the disease.
A letter Mrs Boothby O’Neill sent to her GP, Dr Lucy Shenton, begging her to “help her get enough food to live on” was shown on the first day of the inquest into her death yesterday (Monday).
She said, ‘I know you’re doing the best you can for me, but I really need help feeding myself. 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.’
Maeve Boothby O’Neill, 27, was left bedridden and barely mobile in the final months of her life due to the severity of her myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).
“I haven’t been able to sit up or chew since March. The only person who helps me eat is my mother. I can’t get enough calories with a syringe.
“Please help me get enough food to live.”
It was sent about four months before Mrs Boothby O’Neill died, the inquest in Exeter, Devon, was told.
The inquest heard Dr Shenton was devastated by his death and only felt able to provide evidence to the court in written form.
Ms Boothby O’Neill saw her GP and a mental health professional just four weeks before she died in September 2021, telling them she did not want to die but there was no treatment for MS and she did not want to prolong the agony.
Her GP said she was “active and thinking clearly” despite her malnutrition, insisting she did not want any more hospital admissions and wanted to save energy for her family.
Dr. Shenton summed up the situation, writing: “Maeve wants to live, but there is no further treatment for MS.”
Maeve died at her home in Exeter at 3am on 3 October 2021.
Ms Boothby O’Neill’s father, journalist Sean O’Neill, said Dr Shenton had told the family he had “never seen anyone treated as badly by the NHS as Maeve”.
Her mother, Sarah Boothby, claimed during an earlier hearing that medical staff at the hospital where she sought treatment were well-intentioned but “couldn’t see what was happening in front of them.”
Mrs Boothby O’Neill was admitted to the Royal Devon & Exeter (RD&E) hospital three times in six months but is said to have refused a fourth admission because she felt there was no prospect of treatment or cure for her condition.
Ahead of the inquest, Mr O’Neill said he expected questions to be raised about an alleged delay in providing palliative care for his daughter, “apparently because someone, somewhere in the bureaucracy that developed around her, did not believe her illness was real”.
Anthony Hemsley, medical director of RD&E, said in written evidence disclosed at a pre-inquiry review hearing: “There is a lack of a specialist commissioned service for severe/very severe ME/CFS at both local, regional and national levels.”
Mr O’Neill said at the time: “Imagine if this was a different disease. Imagine if a hospital said it was not authorised and therefore did not have the resources to provide inpatient treatment for people with serious cancer, serious heart disease or other serious disease. It’s hard to imagine.”
At the start of yesterday’s hearing, Ms Boothby said her daughter was an “exceptional child” who loved learning languages and wanted to travel abroad.
Mr O’Neill said Maeve was “academically gifted” and her death had been difficult for her two other children to understand as she made them “beautiful and unique gifts” including designing and knitting Hogwarts jumpers for her siblings.
Dr Paul McDermott, a partner at Maeve’s GP practice in Exeter, told the inquest her case was “complex”.
He said ME and chronic fatigue syndrome are two terms that go hand in hand, but he said he was not an expert.
He visited her at home and told her that “nothing caught his attention” but that “it was obviously not normal” and added: “It was a worrying image.”
The investigation, which is expected to last two weeks, continues.