NHS bosses reject calls for specialist ME care

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”.

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.

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.”

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Source: The Times, 27 September 2024