Thousands of patients with a debilitating condition are being failed by NHS hospitals ignoring treatment guidelines, a report has said.
In 2021 the National Institute for Health and Care Excellence (Nice) produced guidance on how patients with myalgic encephalomyelitis (ME), a complex neurological disorder, should be cared for. However, thousands of people with ME, also known as chronic fatigue syndrome (CFS), remain unable to access specialist care.
Data released under freedom of information laws showed “shockingly poor and patchy provision”, according to a report by the charity Action for ME.
ME patients have fluctuating symptoms including prolonged fatigue, dizziness, muscle pain, gastrointestinal problems and “brain fog”. In very severe cases they become bed-bound and may need tube-feeding. Campaigners have fought to correct a misconception of ME as a psychological or behavioural illness. Its causes and best courses of treatment remain poorly understood.
Only 28 per cent of
NHS trusts and integrated care boards (ICBs), the bodies responsible for health and care services in a local area, have implemented the Nice guidelines published two years ago.
Only one in five people with ME have a personalised care and support plan in place, as recommended in the guidelines. Most trusts and ICBs held no information at all about their ME patients.
Only one in ten (21,927) of the estimated 250,000 patients are recorded as having ME/CFS in the medical system.
The report said that the data “confirms the instincts of the ME/CFS community that the vast majority of them have fallen through the cracks and are not being taken seriously by the health and social care system”.
Professor David Strain, associate professor of cardiometabolic health at the University of Exeter Medical School, said that the team behind the Nice guidelines had made clear, evidence-based recommendations. “It is therefore disappointing that their guidance is not being implemented, particularly given that there are very few centres that have expertise in this area,” he said.
“We now need to explore whether the lack of implementation is due to a lack of commissioning of services, or whether it represents centres choosing not to follow the guidance and use alternative strategies without evidence base.”
Until recently, many services offered a course of “graded exercise therapy” to ME patients, despite sufferers reporting that it frequently made things worse.
In May 2022, Sajid Javid, then health secretary,
promised the development of a delivery plan for patient care and new research into the condition, but this has been continually delayed.
Sonya Chowdhury, chief executive of Action for ME, said: “The report makes for sober reading and while not a surprise to many, the findings indicate significant gaps in services provided for ME/CFS patients at a primary level across England, emphasising the urgency for increased efforts from the health service and the government.............
