GPs to support delivery of ME/CFS care under new NHS plan

GPs are set to play a key role in delivering care for people with mild and moderate ME/CFS under a new delivery plan published today by the Department of Health and Social Care (DHSC).

NHS England is developing a ‘template service specification for mild and moderate ME/CFS’, which will be shared with integrated care boards (ICBs) to support commissioning.

According to the plan, this specification ‘will fully take into account NICE guidelines on ME/CFS’ and be delivered via the new ‘neighbourhood health service’.

The Government said the template aims to support more consistent local provision of services and improve quality of care. Stakeholders will be consulted through a new health services subgroup of the ME/CFS Task and Finish Group.

The plan also includes early steps toward commissioning a specialised service for people with very severe ME/CFS. DHSC and NHS England will ‘explore whether a specialised service should be prescribed by the Secretary of State for Health’ and have held initial discussions. This would be subject to advice from a clinical committee and funding availability.

Announcing the plan today, the Government said it would ensure patients suffering from the effects of ME/CFS can access quality care, closer to home, as pledged in the 10-Year Health Plan. And, ‘as a priority’ it ‘will introduce new training for NHS healthcare professionals, featuring up-to-date learning resources to increase understanding and ensure signs aren’t missed’.

‘This will help combat the stigma faced by people living with ME/CFS, which stems from a lack of awareness about the condition,’ the announcement said.

Among existing moves to improve clinical care of ME/CFS patients, the plan highlighted a recent NICE Clinical Knowledge Summary on ME/CFS, which it described as ‘well used, particularly in primary care’.

And to further improve treatment of ME/CFS patients, healthcare professionals ‘from across disciplines and people with personal experience, including carers, will come together to produce a “Language Matters in ME/CFS” guide’, the plan said.

As part of efforts to improve professional education, NHS England has now produced new e-learning modules on ME/CFS, it added. According to the plan, the GMS is also currently undertaking a review of how it ensures key conditions, including ME/CFS, are taught in undergraduate and postgraduate medical education and training.

A revised estimate recently predicted there are around 404,000 people affected by ME/CFS in England – 62% higher than the previously accepted figure of 250,000.

However, patients often face long delays in diagnosis – in some cases over a decade – and report low satisfaction with NHS care, particularly at the primary care level. Clinicians have also reported a lack of clear pathways and training in managing the condition.

The most recent NICE guideline on ME/CFS was published in 2021 after a delay sparked by a clinical row regarding recommendations to not use graded exercise therapy (GET) and CBT as treatments for the condition.

Whilst the guidelines continue to recommend against the treatment options, they have continued to be challenged, including via a paper in 2023 which saw researchers argue they were ‘not evidence based’.

Pulse also reported that NHS England committed to developing e-learning modules to address the ‘dismissive attitudes’ sometimes faced by patients with ME/CFS, and to bring clinical education in line with the 2021 NICE guideline.

Minister for Public Health and Prevention, Ashley Dalton, said: ‘ME/CFS is a debilitating illness that can severely limit patients’ ability to participate in everyday activities, maintain employment, or enjoy family and social life.

‘Today’s plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff.

‘And through our neighbourhood health services, we will ensure patients suffering from the effects of ME/CFS can access quality care, closer to home, as pledged in our 10 Year Health Plan.

‘Our Plan for Change is transforming how patients experience care and this plan represents a comprehensive approach to addressing the long-standing gaps in care and support for people with these conditions, with patient access to appropriate care at its heart.’