Following Maeve's inquest: The Times: NHS bosses reject calls for specialist ME care

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https://www.thetimes.com/article/ad...Qzf3Qh1fo8j2oYcfDw_aem_M1KCqHh9UydI8xHb8Jdp9Q​

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NHS bosses reject calls for specialist ME care​

National service is not on the agenda despite minister’s acknowledgment that patients are not receiving the care they need

Fiona Hamilton
, Chief Reporter |
Eleanor Hayward
, Health Editor
Friday September 27 2024, 12.01am, The Times
Health
NHS
UK news

Maeve Boothby-O’Neill with her father Sean O’Neill
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NHS bosses have rejected pleas for specialist care for people with severe myalgic encephalomyelitis despite promises from a health minister to tackle the lack of provision.

The recent inquest into the death of Maeve Boothby-O’Neill, 27, whose case exposed failings in the treatment of patients with severe ME, led to a minister’s declaration she had fallen through the cracks.
Andrew Gwynne, the minister for public health and prevention, pledged in August to boost research, improve attitudes and “better the lives of people with this debilitating disease”.

The inquest heard doctors lacked expertise to treat Boothby-O’Neill, the daughter of Times senior writer Sean O’Neill, and there were calls for national expert provision and a specialist centre for the most severely affected patients.
However, The Times has been told that a national service for ME patients is not on the agenda despite acknowledgement that patients are not receiving the expert care they need.

Last month Deborah Archer, the assistant coroner for Devon, said Boothby-O’Neill died at her home in Exeter from malnutrition after three admissions to hospital in her last months of life because doctors “were unable to treat the consequences of her severe myalgic encephalomyelitis”.

Archer said because there was no known treatment or cure for ME, which has an unknown cause, it is “not possible to say whether any treatment would have halted the disease process in Maeve, even if she had been treated against her will”.
At the time, in 2021, there were no specialist units or wards in the NHS for treating severe ME. The situation continues today and senior NHS managers have been told there are no plans to set up a national service.

On Friday, Archer will hold a hearing to decide whether she should write a prevention of future deaths report in an attempt to stop other ME sufferers dying from the disease.
After the inquest Gwynne said: “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.”

Karen Hargrave, the co-founder of #ThereForME, said that the government had made encouraging commitments to improving the care for ME and long Covid patients. However she warned that there did not seem to be a sense of urgency, even though lives were at risk.

The government has committed to publishing its ME delivery plan, the long-delayed strategy to improve treatment and understanding of ME, but not until the late winter and then it will have to be implemented. “We need action now,” Hargrave said. “Patients are being failed, but healthcare workers are being failed just as badly. They need proper structures and clear guidance to provide people with ME-safe care and save lives when needed.”

A spokesman for NHS England said: “Improvements are needed within the health service and across society to increase understanding and awareness of ME — also known as chronic fatigue syndrome — and to make sure that patients and their families are listened to and receive the care they need, in line with Nice guidance. We will work closely with the government, patients and clinicians to achieve these ambitions.”