A coroner has written to the Government to highlight a lack of specialist beds for patients with severe chronic fatigue syndrome following the death of a young woman from the disease.
Deborah Archer also said there was no current available funding for research and treatment into myalgic encephalomyelitis (ME), there was “extremely limited” training for doctors treating patients and the Nice guidelines were limited for managing sufferers in the community.
She spoke out following the death of Maeve Boothby-O’Neill, 27, who had suffered with ME for a decade before she died at home in Exeter in October 2021 from severe malnutrition.
Ms Archer, who is the assistant coroner for Devon, Plymouth and Torbay, has written a preventing future deaths report to the Department of Health and Social Care, NHS England, the National Institute for Health and Care Excellence (Nice), the Medical Research Council, the National Institute for Health and Care Research, and the Medical Schools Council recording her concerns.
She wrote: “During the course of the evidence, it became clear that there were no specialist hospitals or hospices, beds, wards or other healthcare provision in England for patients with severe ME.
“This meant that the Royal Devon and Exeter Hospital had no commissioned service to treat Maeve and patients like her.
“During the course of the inquest, it became clear that there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME.
“During the course of the inquest it became clear that there was extremely limited training for doctors on ME and how to treat it – especially in relation to severe ME.
“During the course of the inquest it became clear that the 2021 Nice guidelines on ME did not provide any detailed guidance at all on how severe ME should be managed at home or in the community and in particular whether or not there is any necessary adaptation needed to the 2017 guidance on Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition.”
The coroner had earlier concluded Miss Boothby-O’Neill had died from natural causes “because of severe myalgic encephalomyelitis (ME)”.
The inquest heard she had been admitted to the Royal Devon and Exeter Hospital three times that year for treatment for malnutrition.
The 10-day hearing focused on the final few months of her life, by which time she was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit up.
Miss Boothby-O’Neill had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels.
Her father, Sean O’Neill, a journalist with The Times newspaper, said afterwards: “The coroner’s report is short, stark and shocking – she has found that NHS care for people with severe ME is ‘non existent’, that medical training is ‘extremely limited’ and research budgets inadequate. She warns there will be further deaths from ME unless action is taken.
“The report is addressed directly to (Health Secretary) Wes Streeting and I urge him to respond in a constructive and meaningful way.
“People with the post-viral illnesses ME and long Covid have been neglected for too long.
“If ministers are serious about tackling the problem of long-term sickness they must improve care and treatment for sufferers.
“The coroner has also sent copies of her report to the NHS, the Medical Schools Council, the medical research funders and Nice.
“It is my plea, as a grieving and heartbroken father, that these bodies step up and take steps to prevent future deaths from this awful illness.”
A Department of Health and Social Care spokeswoman said: “Our deepest sympathies are with Maeve’s family and friends in this tragic case.
“Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart-wrenching example of a patient falling through the cracks.
“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.
“It is important that we learn the lessons from every prevention of future deaths report, and we will consider the report carefully before responding appropriately.
“We are committed to improving the care and support for all those affected, and we intend to publish a Final Delivery Plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.”
An NHS England spokesman said: “Our thoughts remain with Maeve’s family. Improvements are needed within the health service and across society to increase understanding and awareness of ME – also known as chronic fatigue syndrome – and to make sure that patients and their families are listened to and receive the care they need, in line with Nice guidance.
“We will continue to work closely with the Government, patients and clinicians to achieve these ambitions, including carefully considering the concerns set out by the coroner.”
