‘No care pathways’ for severe chronic fatigue syndrome patients, inquest told
There are no plans to address a nationwide deficiency in the provision of specialist hospital units and beds for patients with severe chronic fatigue syndrome, a senior doctor told an inquest.
Dr Anthony Hemsley said he believed NHS England was not carrying out “any active work on this at the current time” to address the issue following the death of Maeve Boothby-O’Neill, 27.
Miss Boothby-O’Neill had suffered with ME for a decade before she died at home in Exeter in October 2021 from severe malnutrition.
An 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.
Last month Deborah Archer, an assistant coroner for Devon, Plymouth and Torbay, concluded she had died from natural causes “because of severe myalgic encephalomyelitis (ME)” but adjourned the hearing to consider whether she should make a preventing future deaths report.
Resuming the inquest, the coroner heard evidence from Dr Hemsley, who is the medical director for the Royal Devon University Healthcare NHS Foundation Trust.
He told the inquest the trust had not been commissioned to provide a specialist ME service for patients with a severe form of the illness either before or after Miss Boothby-O’Neill’s death.
“I can be very clear," he said.
“There are no such care pathways for severe and very severe chronic fatigue syndrome at the Royal Devon.
“Neither is there any physical location to care for patients in that way specifically within a hospital setting.
“The recommended physical requirements are beyond reasonable for a standard secondary care acute hospital.
“My understanding is that having investigated matters there is no such admissions unit or bed within Devon or the south west region or nationally.”
He added: “There are essentially no units or inpatient beds in any NHS institution, or available privately.
“It is certainly not within my gift to provide that level of service.”
The hearing heard there were no plans to commission a service locally in Devon or nationally either.
“I then spoke and met with Dr Michael Marsh, who is the medical director for NHS England south west region, and he was aware of the gap in service and took my concerns very seriously,” he said.
“We decided that it would be prudent for me to investigate the possibility of specialist commissioning.
“So that’s a different body that provides commissioning for this sort of level of service, which would be very much tertiary or national.
“This wasn’t deemed to be appropriate for specialist commissioning.
“I had a further discussion with Dr Marsh and has specifically raised this issue for severe and very severe chronic fatigue syndrome patients with Professor Stephen Powis, the national medical director of NHS England.
“The outcome of that is to note the deficiency in service but Dr Marsh didn’t believe that there’s any active work on this at the current time.
“That’s not to say that there won’t be in the future of course.”
Sean O’Neill, the father of Miss Boothby-O’Neill and a journalist for The Times newspaper, asked Dr Hemsley whether he was “disappointed” by that response.
“I am not surprised that I have been required to try different avenues to raise the profile of the question and stimulate movement in service provision,” he replied.
“Am I surprised? I don’t really wish to answer that. I just tried and I continue to try, as I do for all my patients.”
Dr Hemsley said the hospital trust could potentially create an inpatient ME service if funding allowed.
“There is a greater ability to use funding or the funds that the organisation has in the way that we see appropriate for our local population,” he said.
“However, the financial climate has changed significantly, not just within healthcare of course. The hospital trusts are in a very difficult financial position.
“It just illustrates the fact that we do not have the banked funds within the organisation to use as freely as we would have done perhaps five, 10 or 15 years ago.”
Ms Archer said she would be writing a Regulation 28 report to the Department of Health and Social Care, NHS England and National Institute for Health and Care Excellence (Nice) but did not have the power to ask for specific things to be done.
“I can bring to the Government’s attention the concerns that were raised in this inquest,” she said.
“I know this has been a long and harrowing process and I also understand that at the end of the inquest process no one goes away having all the answers they want or completely happy.
“I hope by making this report it will go some way to starting change on this important area.”
In a statement issued afterwards, Andrew Gwynne, minister for public health and prevention, said: “My deepest sympathies go out to 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.
“I am 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.”
Speaking after the hearing, Miss Boothby-O'Neill's father said: "For me this is the most important part of the inquest. Everything else has been backward-looking.
"It's never going to do what I would love, which is to bring Maeve back. That's never going to happen.
"So what the coroner has decided today is that she's going to write to ministers, to bosses of the NHS nationally and hopefully point towards reform and the fact there's a blind spot in this terrible illness that medicine and science struggle to recognise."
He added: "Hopefully she will bring hope for the hundreds of thousands of people who suffer from this awful illness.
"I'm really hopeful it will bring about change. It's been three years next week since she passed away and there's been very little change so far.
"So hopefully the coroner will spark something which brings things forward.
"I want improvements in medical education, in research into what causes ME and how it can be treated and change around specialist care for ME.
"It's astonishing that more than 50 years after the World Health Organsation recognised ME as a serious illness that there is not a single bed, ward or specialist unit in the NHS or private sector to treat people with this illness."