A leading ME expert has told an inquest there is still no hospital ward in England capable of managing patients with the illness, and said it was a “travesty” that some medical professionals did not believe it was a real physical condition.
Speaking at the inquest of Maeve Boothby O’Neill, a woman who died with ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome) in 2021, Dr David Strain expressed concern at aspects of her treatment at the Royal Devon and Exeter hospital.
He said when she was first admitted he was not even told a patient with severe ME was in the hospital, despite his expertise in the field; after she was taken to hospital on another occasion, she was not put on the ward he requested.
The inquest in Exeter has heard that Boothby O’Neill lived with ME for several years, but it became more acute in 2021 when she was confined to bed and found it almost impossible to get up, wash, eat or drink.
Four months before she died aged 27, she wrote to her GP: “I don’t understand why the hospital didn’t do anything to help me when I went in. I am hungry. I want to eat … Please help me get enough food to live.”
Strain, an honorary consultant at the Royal Devon and Exeter foundation trust and an adviser to an ME charity, said that after Boothby O’Neill’s death he wrote to the chief executive at the hospital warning: “We don’t have the facilities to provide care for someone like Maeve. There will be more Maeves. We need to put a plan in place that if this happens again we don’t as an NHS fail people with severe ME.”
But he told the inquest: “I don’t think there is a ward anywhere in the country that is appropriate to manage ME patients. Since Maeve’s tragic case we have treated other people with severe ME and we have learnt. We have changed the way we manage it. But I don’t believe there is a ward anywhere in the country at the moment that can provide the sort of care that is needed.”
He continued: “This is a disease that has been tremendously stigmatised mainly because it doesn’t have a diagnostic test. Even today there are people who have been through the historic medical schools that didn’t recognise this as a physical disease. That’s a travesty and something that if this hearing can address, then that will be a massive step forward. This is a physical disease.”
The inquest heard that when Boothby O’Neill was first admitted, in March 2021, she was discharged the same day. A GP who treated her, Dr Paul McDermott, told the inquest he was “slightly shocked” at this.
Strain said: “I wasn’t made aware of a patient with severe ME coming into hospital at all. Now there is a process in place. If a patient with severe ME comes into hospital then I am informed about it the same day or following morning.”
When Boothby O’Neill was admitted to the hospital in June 2021, Strain said he requested for her to be treated in a neurology ward but she was taken to a ward specialising in eating disorders.
Strain said: “I think being in the right environment would have sent a clear message that ME is not an eating disorder, it is a neurological disease and would have had everybody thinking along those lines.” He said the decision to put her in that ward was taken by a senior nursing team and it was only the second time his advice on which ward a patient should go to had not been followed.
The inquest continues.
