A senior NHS professional has told a coroner that there is not a single bed anywhere in the country set aside specifically for the treatment of a patient with severe myalgic encephalomyelitis (ME).
Dr Anthony Hemsley was addressing a special hearing in Exeter after the inquest this summer into the death of Maeve Boothby O’Neill who died in October 2021 at her home in Exeter, at the age of 27, after living with the debilitating disease, also known as chronic fatigue syndrome, for more than a decade.
Hemsley, on secondment from his role as the medical director for the Royal Devon University healthcare NHS foundation trust, which was responsible for Boothby O’Neill’s care, said he had investigated the provision of care for severe ME and found that there are no admissions units or beds at any NHS or private institution for the treatment of the disease.
Boothby O’Neill’s father, Sean O’Neill, told the coroner that the situation was “shameful”.
Deborah Archer, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, said she had decided to issue a “prevention of future deaths report” after Friday’s hearing, which will be published at a later date.
Hemsley told the coroner: “My understanding, having investigated matters, is that there is certainly no such admissions unit or even bed within Devon, within the south-west region, or nationally.”
He added: “I specifically investigated it as an option for future patients and there are essentially no units or inpatient beds in any NHS institution or available privately.”
He said the NHS trust had not been commissioned to provide a specialist service for patients with severe ME. He escalated his inquiries up to Sir Stephen Powis, the national medical director of NHS England, and understands there is no work being done to change this at present.
In a submission to the hearing, Sean O’Neill, a journalist with the Times, said: “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 Organization for more than 50 years.
“And it is not just one hospital, it is the entire health system in the UK – public and private – that is unable to treat severe ME.”
At the conclusion of a two-week inquest in August, Archer found Maeve had died from natural causes “because of severe myalgic encephalomyelitis [ME]”.
The inquest heard that, at the end of her life, Boothby O’Neill was confined to bed, unable to chew food and had difficulty drinking because she could not sit up. She had experienced fatigue from the age of 13, which got worse after she completed her A-levels.
She was admitted to the Royal Devon and Exeter hospital three times in the year before her death for treatment for malnutrition, but refused a fourth admission after being told there was no treatment to alleviate her condition.
She had been placed on a nasogastric tube for artificial feeding while in hospital but it was removed after complications. An alternative – parenteral feeding through a vein – was rejected because it would have been unsafe in her case.
Less than three months before her death, the inquest heard, Boothby O’Neill wrote to her GP pleading “please help me get enough food to live”, and adding: “I am hungry, I want to eat.”
