NHS departments unable to treat ME patients, doctor tells Exeter inquiry
A leading ME expert has told an inquiry that there is still no hospital unit in the UK capable of treating patients with the condition, calling it a “travesty” that some medical professionals did not believe it was a real physical condition.
Speaking at the inquest into a woman who died of ME In 2021, Dr David Strain also raised concerns about aspects of the treatment Maeve Boothby O’Neill received at the Royal Devon and Exeter Hospital.
He said that when she was first admitted, he was not even told that there was a patient with severe ME in the hospital, despite his expertise in that area. And after she was taken to hospital on another occasion, she was not placed in the ward he had requested.
The inquest in Exeter has heard that Boothby O’Neill has been suffering from ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) for several years, but the condition became more severe 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 at age 27, she wrote to her family doctor: “I don’t understand why the hospital did nothing to help me when I was admitted. I am hungry. I want to eat… Please help me get enough food to live.”
Strain, an honorary adviser to the Royal Devon and Exeter Foundation Trust and an advisor to an ME charity, said that after Boothby O’Neill’s death he wrote to the hospital’s chief executive warning: “We don’t have the facilities to care for someone like Maeve. There will be more Maeves. We need to put a plan in place so that when this happens again, we as the NHS don’t let people with severe ME down.”
But he told the inquiry: “I don’t think there is a unit anywhere in the country that is suitable for treating ME patients. Since Maeve’s tragic case, we have treated other people with severe ME and we have learned. We have changed the way we treat it. But I don’t think there is a unit anywhere in the country at the moment that can provide the kind of care that is needed.”
He continued: “This is a disease that has been enormously stigmatized, largely because there is no diagnostic test for it. Even today, there are people who have gone through the historic medical schools who have not recognized this as a physical disease. That is a travesty and something that, if this hearing can address, will be a huge step forward. This is a physical disease.”
The inquest heard that when she 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 “mildly shocked” by this.
Strain said: “I was never notified at all that a patient with severe ME was coming into hospital. Now there is a process. If a patient with severe ME comes into hospital, I am notified the same day or the next morning.”
When Boothby O’Neill was admitted to hospital in June 2021, Strain said he requested that she be treated in a neurology unit. But she was taken to a unit specializing in eating disorders.
Strain said: “I think in the right environment a clear message would have been sent that ME is not an eating disorder but a neurological illness and everyone would be thinking along those lines.” He said the decision to place her in that ward was made by a team of experienced nurses and it was only the second time his advice about which ward a patient should go to had not been followed.
The investigation is still ongoing.