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 found by a coroner on Friday to have died from malnutrition due to severe myalgic encephalomyelitis (ME), 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 asking for help, 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 on Friday, public health minister Andrew Gwynne said Ms Boothby-O’Neill’s death was a ‘heart wrenching 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 post-viral 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 had shown none of the medical staff at the RD&E had any training in treating severe ME and several 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.
‘There were no policies, protocols or guidelines for the treatment of ME in 2021 and there are still none today.
‘Imagine that being the case for any other serious, life-limiting or life-threatening illness.
‘Imagine a doctor telling a Parkinson’s sufferer or a cancer patient that they had no idea how to treat their illness.
‘This is the very definition of a systemic failing. It is not about the failings of individuals or a single hospital.
‘It is about the entire system that should protect, or at least try to protect, those with severe ME.’
The inquest heard Ms Boothby-O’Neill had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels.
Some 250,000 people in Britain suffer from the condition, which comes with flu-like symptoms, extreme tiredness and mental lethargy that can last for years.
Other symptoms of chronic fatigue syndrome (CFS), or myalgic encephalopathy (ME), include disturbed sleep, poor memory and reduced concentration.
The cause of the illness is unclear, provoking the heated debate that has lasted for decades among the medical community.
Some patients return to full health and others deteriorate progressively, however, most fluctuate between good and bad periods.
There is no cure for CFS, with the majority of treatments to reduce symptoms being ineffective.
Worldwide it is believed that 17 million people suffer with CFS, according to the ME Association.
Her mother, Sarah Boothby, was her full-time carer and struggled to look after her daughter on her own.
She had been admitted three times to hospital for help with her feeding.
A nasogastric tube had been removed due to her vomiting while she was not considered suitable for total parenteral nutrition feeding.
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.
The inquest heard there was a severe shortage of specialist hospital wards to treat ME patients.
Dr Willy Weir, an expert in ME, 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 the disease.
In her findings, Ms Archer said a named healthcare professional should have been appointed to co-ordinate Ms Boothby-O’Neill’s care as soon as it was realised she required hospital admission.
‘With the benefit of 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.
‘The disease for which there is no cure was not allowing her to take food and drink however administered and the outcome may have been the same whatever the treatment given.
‘For these reasons I cannot say these factors caused or contributed to her death.’
Ms Boothby told the hearing she believed her daughter’s death was preventable.
‘By this stage Maeve was starving to death. She knew it, I knew it, her father knew it, we knew it, the GP knew it,’ she said.
‘How the hospital did not recognise this as the inevitable outcome of inadequate hydration and nutrition must be for them to answer.
‘After Maeve died, GP Dr Lucy Shenton told me she had never seen anyone so badly treated by the NHS.’
A further hearing will be held next month over whether the coroner will issue a Prevention of Future Deaths report.