A bereaved father has told a coroner that doctors must stop believing ME is a mental health problem.
Maeve Boothby O’Neill died in October 2021, aged 27, after years of suffering from myalgic encephalomyelitis (ME). The condition affects the nervous and immune systems and saps energy, making it difficult to perform physical and mental tasks and causing severe pain and fatigue.
An inquest into her death found that a “lack of understanding by medical staff” led to failings in the treatment that Ms Boothby O’Neill received, with her family struggling to find proper care from the NHS.
In a letter submitted to the coroner ahead of Friday’s hearing, Sean O’Neill, a Times journalist, said: “There is a need to dispel the deeply entrenched view, held especially by older medics, that ME is a psychological condition, that somehow the patient is only ill because they believe themselves to be ill.”
He added: “It is, in my view, shameful that a hospital in the UK in 2021 should be ‘unable’ to treat a disease that has been recognised by the World Health Organisation for more than 50 years.”
On Friday, Deborah Archer, the assistant coroner of Devon, confirmed she would would be drafting a Prevention of Future Deaths report to raise issues that arose in the inquest to authorities including the Department of Health and Social Care (DHSC), NHS England and Nice (National Institute for Health and Care Excellence).
It is understood to be the first time a coroner has taken such a step in relation to a death from ME.
Ms Boothby O’Neill, who had lived with ME for more than a decade, was admitted three times to Royal Devon and Exeter Hospital over the course of 2021, but refused a fourth admission because no treatment was available to improve or alleviate her condition.
‘Poorly understood disease’
Giving evidence at Exeter Coroner’s Court on Friday, Dr Anthony Hemsley, medical director for the Royal Devon University Healthcare NHS Foundation Trust, told the court how he had taken several steps to raise issues in relation to the illness with senior NHS executives and politicians.
This included a lack of education among healthcare professionals, and community care specifically tailored for ME patients.
In a narrative verdict given last month, Ms Archer ruled that Ms Boothby O’Neill had died of malnutrition caused by severe ME after her hospital was unable to treat the condition.
There were no policies, protocols or guidelines for the treatment of ME in 2021, and on Friday Ms Archer told the court there were just “one or two paragraphs” of Nice guidance on the condition.
In his submissions to Ms Archer, Mr O’Neill asked the coroner to consider writing to a number of bodies to improve care and treatment of patients, training and education for medical professionals, and research into the “poorly understood disease”.
Mr O’Neill suggested several organisations as recipients, including, but not limited to, the DHSC, the Medical Research Council, the NHS, and the Medical Schools Council.
Royal Devon University Healthcare NHS Foundation Trust was also asked to provide a document to Ms Archer detailing its policies on ME patients.
Addressing Mr O’Neill and Sarah Boothby, Maeve’s mother, the coroner said: “I know that this has been a long and harrowing process and I also understand that at the end of these processes, nobody goes away with all the answers they want and completely happy.
“But I hope that by making this report it will go some way into starting change into this important area.”
Speaking after the hearing, Mr O’Neill said: “It is hugely significant that the coroner is to write a Prevention of Future Deaths report and direct it to health ministers and NHS bosses.
“It is the first time a coroner will have taken such a step after a death from ME.”
He added: “Science and medicine have a blind spot where this awful illness is concerned but the coroner has clearly seen the risks posed by that systemic failure.
“I hope her report will be a spur to action on medical training, much-needed biomedical research and the provision of specialist care for patients with severe ME.”
