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.
By Steven Morris
Extracts
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.”
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.
Professor David Strain
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.
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.
Professor David Strain
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.
Further Media Coverage
- The Times: NHS has no specialist ward for ME patients, inquest told | 23rd July 2024 (paywalled)
- BBC News: ME patients face specialist bed shortage – inquest | 23rd July 2024
- The Independent: Inquest of woman unable to chew food told of shortage of specialist beds for ME patients | 23rd July 2024
- The Telegraph: NHS has no ward equipped to deal with severe ME, inquest told after patient’s death | 23rd July 2024 (paywalled)
- The Standard: Inquest told of shortage of specialist beds for ME patients | 23rd July 2024
- MSN News: Inquest told of shortage of specialist beds for ME patients | 23rd July 2024
- Belfast Telegraph: Inquest into death of NI reporter’s daughter told of severe shortage of specialist beds for patients | 23rd July 2024
- Daily Mail: Doctors treating woman who died from debilitating ME ‘did not believe it was a medical problem', inquest hears | 23rd July 2024