A senior NHS professional has told a coroner that nowhere in the country has a single bed been set aside specifically for the treatment of a patient with severe myalgic encephalomyelitis (ME).
Dr. Anthony Hemsley addressed a special hearing in Exeter following this summer’s inquest into the death of Maeve Boothby O’Neill, who died at her home in Exeter in October 2021, aged 27, after living with the debilitating disease , also known as chronic fatigue syndrome, for more than a decade.
Hemsley, seconded from his role as medical director of 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 there were no inpatient units or beds at an NHS or private facility for the treatment of the disease.
Boothby O’Neill’s father, Sean O’Neill, told the coroner 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: “It is my understanding, having investigated the cases, that there is certainly no such recording unit or even a bed in existence in Devon, in the South West region, or nationally.”
He added: “I specifically looked into it as an option for future patients and there are essentially no units or hospital beds available in any NHS setting or privately.”
He said the NHS trust had not been commissioned to provide a specialist service for patients with severe ME. He escalated his questions to Sir Stephen Powis, the national medical director of NHS England, and understands no work is currently being done to change this.
Contributing to the hearing, Sean O’Neill, a journalist at the Times, said: “It is, in my view, shameful that a hospital in Britain in 2021 would be ‘incapable’ of treating a disease that has been recognized for more than 50 years by the World Health Organization.
“And it’s not just one hospital, it’s the entire healthcare system in Britain – public and private – that is unable to treat severe ME.”
At the end of a two-week investigation in August, Archer discovered that Maeve had died of natural causes “due to severe myalgic encephalomyelitis (ME)”.
The inquest heard that Boothby O’Neill was confined to bed towards the end of her life, unable to chew food and having difficulty drinking because she could not sit up. She suffered from fatigue from the age of 13, which worsened after completing 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 nutrition during her hospital stay, but this was removed after complications. An alternative – parenteral nutrition 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 a letter to her GP pleading “Please help me get enough food to live”, adding: “I have hungry, I want to eat.”