Doctors to be trained on ME in NHS plan to transform care
The Department of Health and Social Care has announced that medical students and NHS staff will be offered training modules in how to diagnose, manage and treat ME/chronic fatigue syndrome (CFS).
It is part of an ME/CFS delivery plan, aiming to transform care for the illness, commissioned by Sir Sajid Javid, the Conservative health secretary, in 2022. The document, published today, said it was vital the attitudes of NHS staff changed so that patients with ME felt 'heard, believed and not stigmatised'.
• ME sufferers 'feel invisible and ignored' amid lottery of NHS care
There will also be a public awareness campaign, and schools and social care services will be asked to provide greater support to patients with the condition.
The plan outlines steps to improve research and find treatments, including trials to repurpose existing medicines and see if they can help treat ME/CFS.
Research teams are being invited to apply for grants of up to £200,000 from the National Institute for Health and Care Research to help find treatments.
The health department also said it will explore the provision of a 'specialised service' in the NHS for patients with severe ME, but that this was 'subject to funding availability'.
ME is said to affect about 400,000 people in England and Wales with symptoms including exhaustion and pain. Severe cases can be fatal, with patients bedridden and unable to eat or drink. It has taken decades to overturn a misconception that ME is a psychological or behavioural disorder.
Ashley Dalton, the public health minister, said the plan was an 'important milestone' to improving care and that people were 'let down' by the health and care system.
'I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events,' she wrote.
However, campaigners said the plan 'is just not good enough', warning that it does not commit to research funding or new NHS services for people with severe ME.
• Plan to help ME sufferers has been delayed for too long
Inadequate NHS care was highlighted at the inquest of Maeve Boothby O'Neill, who died in 2021 aged 27 from malnutrition caused by severe ME. The coroner issued a prevention of future deaths report calling for attention to 'nonexistent' specialist care.
Sonya Chowdhury, chief executive of Action for ME, said: 'We welcome actions included in the plan to redress stigma and improving training of professionals. It's imperative to improve access to health and social care services for people with ME, and this is a good start. We particularly welcome a commitment to explore a specialised service for people with severe and very severe ME.
'However, the plan simply does not go far enough. In particular, we need a funded, dedicated research hub to leverage our world-leading life sciences sector to unlock treatments and ultimately cures for ME.
'Without a commitment to better coordinate research, people with ME will continue to be neglected, overlooked and, for many, confined to their homes.
'The ME community and scientists have been calling for research to be accelerated through a strategic approach for years and we are still not seeing a strategic approach to address this historic shortfall.'
Karen Hargrave, from the ThereForME campaign, also called for the plan to be backed by investment.
'This is about more than words on paper: it is about the people lying bedbound in darkened rooms across this country, who desperately need safe NHS care and research to accelerate treatments.'
Dr Charles Shepherd, honorary medical adviser to the ME Association, said the group was 'especially disappointed to find that the plan fails to include any real action or funding' to improve treatment of people with ME.
He said: 'Around 400,000 people have ME/CFS… this is a major health crisis. So while today's announcement is an important step forward in helping to improve the quality of life of people with ME/CFS, the government must now go much further to improve their medical care and management and help to fund much needed biomedical research into cause and treatment.'
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