A woman died of ME after her GP warned she had ‘never seen anyone so poorly treated by the NHS’, an inquest has heard.
Maeve Boothby O’Neill, 27, was left bedridden and hardly 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).
Her family believe her death in October 2021 exposed ‘a major systemic failing’ of the health service to both understand and treat severe cases of the condition.
The first day of an inquest into her death was yesterday (MON) shown a letter Ms Boothby O’Neill sent to her GP, Dr Lucy Shenton, begging her to ‘help me get enough food to live’.
It said: ‘I know you are 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.
Maeve Boothby O’Neill, 27, was left bedridden and hardly 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)
‘I have been unable to sit up or chew since March. The only person helping me eat is my Mum. I cannot get enough calories through a syringe.
‘Please help me get enough food to live.’
It was sent around four months before Ms Boothby O’Neill died, the inquest in Exeter, Devon, was told.
Dr Shenton was left devastated by her death and only felt able to provide evidence to the court in written form, the inquest heard.
Ms Boothby O’Neill saw her GP and a mental health practitioner just four weeks before she died in September 2021, telling them she did not want to die, but there was no treatment for ME and she did not want to prolong the agony.
Her GP said she was ‘switched on and thinking clearly’ despite her malnutrition, insisting she did not want any more hospital admissions and wanted to save her energy for her family.
Dr Shenton summarised the position and wrote: ‘Maeve wishes to live but there is no further treatment for ME.’
Maeve died at home in Exeter at 3am on October 3rd 2021.
Ms Boothby O’Neill’s father, journalist Sean O’Neill, said that Dr Shenton had told the family she had ‘never seen anyone so poorly treated by the NHS as Maeve was’.
Her mother Sarah Boothby claimed during an earlier hearing that medical staff were well intentioned at the hospital she sought treatment, but ‘they could not see what was going on in front of them’.
Ms Boothby O’Neill was admitted three times to the Royal Devon & Exeter (RD&E) hospital in six months, but was 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 his daughter with palliative care, ‘apparently because someone, somewhere in the bureaucracy that developed around her did not believe her illness was real’.
Anthony Hemsley, the medical director of the RD&E, said in written evidence disclosed at a pre-inquest review hearing: ‘There is a lack of a commissioned specialist service for severe/very severe ME/CFS both locally, regionally and nationally.’
Mr O’Neill said at the time: ‘Imagine that this was a different illness. Imagine a hospital saying that it was not commissioned and therefore not resourced to provide inpatient treatment to those with severe cancer, those with severe heart conditions, those with another severe disease. It is difficult to conceive.’
At the start of yesterday’s hearing, Ms Boothby said her daughter was an ‘exceptional child’ who loved learning languages and wanted to travel overseas.
Mr O’Neill said Maeve was ‘academically gifted’ and whose death has been hard for his two other children to understand as she made ‘beautiful and unique presents’ for them which included designing and knitting Hogwart sweaters for her siblings.
Dr Paul McDermott, a partner at Maeve’s GP practice in Exeter, told the inquest that her case was ‘complex’.
He said that 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 said ‘nothing jumped out’ but said it was ‘obviously not normal’ and said: ‘It was a worrying picture.’
The inquest, due to last two weeks, continues.
