I beg to move
Amendment 78, in
Clause 58, page 43, line 40, at end insert—
“1. (8B) Regulations under subsection (8A) must include provision about the period within which NICE guideline NG206 on myalgic encephalomyelitis (ME) must be complied with.
2. (8D) The
Secretary of State must publish an annual statement on compliance with NICE guideline NG206, including the extent to which integrated care boards and relevant NHS bodies have implemented recommendations relating to ME specialist services and severe or very severe ME.”
The amendment would require that a period must be set within which the NICE guideline NG206 on ME must be complied with by ICBs and other health bodies. Furthermore, the Secretary of State must publish an annual statement on compliance with NICE guideline NG206 across the NHS in England.
With this it will be convenient to discuss
Clause stand part.
The
Amendment was tabled by my hon. Friend
Tessa Munt on behalf of the approximately 1.2 million people in England who live with myalgic encephalomyelitis, because five years after the introduction of National Institute for Health and Care Excellence guideline NG206, little has changed. Service provision according to NG206 remains patchy and poor, with many patients having traumatic experiences. The amendment would require a period to be set in which integrated care boards and other health bodies must comply with the guideline, and the
Secretary of State must publish an annual statement on compliance with NG206 across the NHS in England.
The introduction of the guideline after sustained campaigning represented a major reform after years in which ME was treated as a psychiatric condition and patients were pushed to follow graduated exercise therapy. Often, GET had disastrous consequences, precipitating serious deteriorations that patients never recovered from. Credit is due to
Mrs Hodgson, the current
Minister for Public Health and Prevention, for her determination when in
Opposition to bring about the change.
In a written answer published last week, the Minister for Public Health and Prevention confirmed that all ICBs have a statutory obligation to ensure sufficient care provision for their population, but the experience of those with ME is that that obligation is far from being fulfilled. In some ICBs, no services for ME are commissioned; in others, the provider has a history of providing services that reflect not NG206, but the old and condemned approach of GET. Some services are provided out of psychiatry departments, which is a huge red flag for those with ME, and information on the quality of services is patchy. Results from a big survey of more than 5,000 people with ME or long covid in late 2025 painted a bleak picture: more than half said that they had been disbelieved by an NHS healthcare official, one in three had been made to feel that their ME was their own fault, and almost two in five had had an encounter with a clinician that was traumatic or traumatising.
Five years after its introduction, NG206 is far from being complied with, and so members of the ME community—approximately 1.2 million people, as I said—are desperately asking that something be done to address the situation. The amendment represents a route that offers hope for many long-neglected and mistreated people. I do not intend to press the amendment to a vote, but I hope that the Minister will be able to reassure us about improving the consistency of provision for people with ME.
Moving to the
Clause generally, we broadly support the intention, but think that more safeguards need to be built into the principle, given the powers that are being handed to the Secretary of State. The clause makes provision for the period for compliance with a NICE recommendation, but gives no detail of how that will work in practice or how often the Secretary of State will change the standard three-month rule that NICE requires. No ceiling is put on the compliance period, no criteria govern when the period may be extended, and there is no duty to consult or set out reasoning.
What will the process be when the Secretary of State intervenes in the period of time for compliance with a NICE recommendation? We thought that there would be some mix of evidence requirements, consultation, statement of reasons, impact assessment and some kind of parliamentary scrutiny. The Secretary of State should at least have to set out their reasoning why the new power has been used. The value of the current requirement is almost entirely due to the compliance period being short and fixed. The three-month rule gives a positive NICE recommendation practical force. A power to lengthen or vary that period without constraint weakens the requirement in substance while leaving it formally intact. The right is not removed but its timing is made discretionary. For a patient awaiting treatment, that does not amount to the same thing.
A variation power is not new. Since the introduction of the budget impact test in 2017, NHS England has been able to apply to NICE to extend the funding period for medicines with a budget impact above a defined threshold, but, importantly, that period is criteria-based, triggered by a defined financial threshold, subject to a defined process and time-limited in effect. We are not overtly opposed to the power in principle, but more safeguards should be built into the criteria for its application. I would be grateful for some guidance from the Minister on that.
[discussion continues, full discussion can be read here:
https://www.theyworkforyou.com/pbc/2026-27/Health_Bill/12-0_2026-07-07a.421.3 ]
Bill Esterson Chair, Energy Security and Net Zero Committee, Chair, Energy Security and Net Zero Committee
Sharon Hodgson The Parliamentary Under-Secretary for Health and Social Care
Tom Morrison Liberal Democrat Deputy Chief Whip
Helen Morgan Liberal Democrat Spokesperson (Health and Social Care) 
Roger Gale Deputy Speaker and Chairman of Ways and Means
Charlie Maynard Liberal Democrat Spokesperson (Chief Secretary to the Treasury)
Julian Smith Conservative, Skipton and Ripon
