NHS has no ward equipped to deal with severe ME, inquest told after patient’s death
There are no hospital wards in the country specifically designed to treat patients suffering from myalgic encephalomyelitis (ME), a senior consultant has said.
Dr David Strain told an inquest into the death of 27-year-old Maeve Boothby O’Neill, who died from the condition, that there would be more victims like her if the NHS did not recognise the urgency of tackling the chronic fatigue condition.
Ms Boothby O’Neill died in October 2021 from ME, which affects the nervous and immune systems and saps energy, making it difficult to perform physical and mental tasks and causing severe pain and fatigue, leaving her unable to eat normally.
Dr Strain, who was the Royal Devon & Exeter (RD&E) NHS Trust’s clinical lead for Covid and provided the hospital with medical support for its ME patients, told the inquest there was still no ward anywhere in the NHS designed specifically to treat the condition.
He said: “In the best-case scenario there’s no ward anywhere in the country that can provide the sort of care needed.
“There will be more Maeves if the trust is not equipped to deal with this and we need a plan in place to make sure that as an NHS we don’t fail people with severe ME.”
Dr Strain added: “The NHS does not have the right facilities to manage, to treat, people with severe ME.”
Level of research ‘woefully inadequate’
He stated that “the level of research for this condition is woefully inadequate” given the number of people affected by ME.
Dr Strain said that some special features to treat the condition had been introduced at the RD&E since Ms Boothby O’Neill’s death at her home in Exeter.
These include screened-off areas, silence around patients, blackout curtains, no perfume or aftershave to be worn by staff for risk of triggering a reaction, familiar voices and less intrusive observation.
He added that even after the suffering experienced by patients such as Ms Boothby O’Neill and thousands of other ME sufferers, many in the health profession still refused to recognise it as a specific medical condition.
“Even today there are people who have been through historic medical schools who don’t recognise it as a disease,” he said. “That’s a travesty this hearing can address and that will be a massive step forward.”
Dr Strain told the inquest the hospital had placed Ms Boothby O’Neill on what he thought was an unsuitable ward.
The consultant said that while it had no ward specifically set up for ME patients, the neurology unit he had recommended for the treatment of Ms Boothby O’Neill was more suitable than an eating disorders facility, even though she was severely malnourished because of the disease.
But against his wishes Ms Boothby O’Neill was admitted by a senior nursing team to Lowman, the RD&E’s eating disorder ward, on June 23, her second admission to hospital.
In evidence to the inquest into Ms Boothby O’Neill’s death in October 2021, Dr Strain said: “It was organised that she should come into Bolham ward, the neurology ward.
“This was agreed to be preferable to Lowman ward where she stayed on her last admission as, although she and her mother built up a good relationship with the ward team, the focus of Lowman ward was eating disorders (ie; encouraging nutrition in people who are reluctant to eat) whereas neurology wards are used to dealing with people who wish to eat, but cannot for a multitude of physical reasons.”
Dr Strain said a special side room had been organised for Ms Boothby O’Neill on Bolham ward to minimise harmful sensory input.
He added: “Whilst Maeve did not require neurology input as such, it was the nursing and medical environment of a neurology ward that I considered would be beneficial.”
‘Shocking that consultant’s decision overruled’
Commenting on Ms Boothby O’Neill being admitted to Lowman ward instead, Dr Strain told the hearing: “Being in the right environment would have been a clear message it [ME] was not an eating disorder and should not be treated as such. It is a neurological disorder. I think she should have been on Bolham.”
Ms Boothby O’Neill’s father Sean O’Neill, a journalist with The Times newspaper, told the hearing: “It seems really shocking to me that you can make the decision at consultant level and that it’s overruled.”
Dr Strain also stated that he had been left “furious” when staff did not go ahead with an agreed plan in early July 2021 to feed Ms Boothby O’Neill by intravenous NG tube to overcome her weight loss and lack of nutrition.
“I was not best pleased that we had a meeting a week earlier and that had been ignored. We needed to get nutrition into Maeve,” Dr Strain said.
Towards the end of her life Maeve refused treatment designed simply to keep her alive.
In a poignant piece of evidence Dr Strain said: “The discussion with Sarah [Ms Boothby O’Neill’s mother] made it clear that Maeve was not suicidal and would willingly receive any experimental treatment that may improve her prognosis, however she did not want to continue to have life-sustaining treatment with no hope of a cure for the ME itself.”
In September 2021, shortly before her death, Maeve refused TPN treatment, in which nutrients are delivered intravenously by tube to a patient, as she feared it would only prolong her agony.
Dr Strain said he agreed with her decision at the time, telling the inquest: “I stand by the opinion it would keep people alive but not keep them living.”
However, with her parents listening, the consultant acknowledged that since Ms Boothby O’Neill’s death one academic study has found that eight ME sufferers have benefitted from TPN treatment - although he added that it was still considered a last resort measure.
‘Please help me get enough food to live’
Ms Boothby-O’Neill had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels, and later struggled to maintain “any normality due to fatigue”.
From March 2021 she had been unable to feed herself and according to medical notes was unable to read, watch TV or engage in conversations by July 2021, and was only getting out of bed to use the toilet.
She was also unable to chew food and had difficulty drinking because she was not able to sit up.
Miss Boothby-O’Neill had been admitted three times to the Royal Devon and Exeter Hospital, but was discharged each time and sent home.
She had wanted to be treated at home and “reluctantly” agreed to hospital admissions, although she felt she was getting no help there.
On June 18 Ms Boothby O’Neill sent a heartrending email to her GP, Dr Lucy Shenton, asking for help.
“Dear Dr Shenton, I know you are doing your best for me, but I really need help with feeding. I don’t understand why the hospital didn’t do anything to help when I went in. I am hungry, I want to eat,” she wrote.
“I have been unable to sit up or chew since March and the only person helping me eat is my mum. I cannot get enough calories from a syringe.
“Please help me get enough food to live.”