My tragic daughter fell through a huge hole in healthcare system
Heartbroken father’s verdict on death of ME sufferer aged 27
A WOMAN who died from ME ‘did not just fall through the cracks, she fell into a huge hole in our healthcare system’, her father said at the end of her inquest.
Maeve Boothby-O’Neill, 27, was yesterday found by a coroner to have died from malnutrition due to severe myalgic encephalomyelitis – also known as chronic fatigue syndrome.
Deborah Archer, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, recorded a conclusion of natural causes following a two-week inquest.
Ms Boothby-O’Neill was left bedridden and unable to eat in the final months of her life due to the severity of her condition and was admitted to the Royal Devon and Exeter Hospital (RD&E) three times for treatment for malnutrition. 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.
In June 2021, she had written to her GP, saying: ‘I don’t understand why the hospital didn’t do anything to help when I went in. I am hungry, I want to eat. Please help me get enough food to live.’
Following the inquest’s conclusion yesterday, public health minister Andrew Gwynne said Ms BoothbyO’Neill’s death was a ‘heartwrenching example of a patient falling through the cracks’. He said the Government was committed to publishing a delivery plan this winter which will focus on ‘boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease’.
But Ms Boothby-O’Neill’s father, journalist Sean O’Neill, rejected the minister’s characterisation of his daughter’s death.
‘Andrew Gwynne has spoken of his own battles with Long Covid and I know he understands postviral illness,’ he said. ‘But Maeve didn’t just fall through the cracks, she fell into a huge hole in our healthcare system.’ Mr O’Neill highlighted evidence that showed no medical staff at the RD&E had training in treating severe ME, and some professionals did not believe her illness was real.
He added: ‘The coroner was told there were no specialist units, no wards, not even a bed anywhere in the NHS treating severe ME. Imagine that being the case for any other serious, life-limiting or life-threatening illness. This is the very definition of a systemic failing.’ The inquest heard Ms Boothby-O’Neill had been suffering from fatigue since the age of 13, which got worse after her Alevels. Her mother, Sarah Boothby, was her full-time carer in Exeter and struggled to look after her daughter on her own.
Maeve had been admitted three times to hospital for help with feeding. A tube from her nose to her stomach had been removed due to her vomiting, while she was not considered suitable for ‘total parenteral nutrition feeding’ – where nutrients and fluids go directly into the bloodstream.
Doctors said they did all they could to help Ms Boothby-O’Neill, who had mental capacity and wished to be treated at home – trying to persuade her to stay at the hospital.
ME expert Dr Willy Weir had written to the chief executive of the hospital a month before Ms Boothby-O’Neill died, about her case and the ‘outdated’ views some doctors held about ME.
In her findings, Ms Archer said a named healthcare professional should have been appointed to
‘Please help me get enough food to live’
co-ordinate Ms Boothby-O’Neill’s care as soon as it was realised she required hospital admission.
‘With hindsight, had medics known Maeve would deteriorate to the point of not being able to tolerate food or drink at all, it may have been that an earlier feeding tube may have been appropriate,’ she said. ‘Whether this would have made a material difference to the outcome I cannot say.
‘For these reasons I cannot say these factors caused or contributed to her death.’
Ms Boothby told the hearing she thought her daughter’s death was preventable. ‘By this stage Maeve was starving to death. She knew it, I knew it, her father knew it, the GP knew it,’ she said.
A further hearing will be held next month over whether the coroner will issue a Prevention of Future Deaths report.
‘There was not a bed anywhere’