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.

I have sympathy with the principle behind Amendment 58, in the name of the hon. Member for Wells and Mendip Hills. The hon. Member for North Shropshire is right to say that individuals with ME have not always received the best quality care. In many cases, ME is a debilitating and incredibly frustrating condition, and around 10% to 25% of sufferers have severe ME, meaning that they are housebound or bedbound. We know that some patients are sadly not believed by medical professionals.

In 2021, NICE said that most medical students have little or no training on the condition. The Government have previously committed to increasing the uptake of ME modules among NHS professionals. What progress has been made on that in the last couple of years? The Government also committed in the ME/CFS action plan to develop and run a public awareness initiative, with implementation expected by May this year. Has the Department developed that initiative yet? If not, what is responsible for the delay? It is not marked as complete on the Government website.

The amendment would put guidance for medical professionals into legislation, though, and my concerns about that are twofold. First, it may slow down improvements in the future. If individuals have to legally follow that guidance, how can they innovate and improve treatment without having to come back to Parliament for more primary legislation? That will take time and may mean that people with ME get worse rather than better care in the short term.

The requirement would also limit clinical judgment. A patient may have a particular set of symptoms or conditions or be on a particular set of medications that mean that the doctor or clinician looking after them needs to vary from the guidance. NICE intends the guidance to be just that, guidance, not law, but if guidance becomes law, the doctor or clinician will not be able to vary from it. My concern is that the amendment would be overly restrictive. Although it is well-intentioned, and it is a good idea to ensure that guidance is followed where possible, it would be too rigid. I therefore do not support the amendment, while continuing to support the aim of better treatment.

Clause 58 amends the Health and Social Care Act 2012 by inserting a new section 237(8A), which states:

“Provision made under subsection (8)(b) may include provision about the period within which a recommendation is to be complied with (including provision for the period to be determined by NICE or the Secretary of State).”

At the moment, NICE technology appraisals check the value of a product, whether a drug or a technology, then NICE makes a recommendation. It is then supposed to be the case that within 90 days or three months, ICBs ensure that those technologies are available, but we know that in the real world it can take longer—sometimes 12 to 24 months—for some things to become available. That could be because technology needs to be bought or training needs to take place.

I understand why there could be variation and why the Government may want to consider varying the period, but it is not clear why they need to do so in legislation, because it is possible now to vary the period on an individual basis. For example, the Government imposed a five-year limit rather than a 90-day limit for the introduction of hybrid closed loop systems for diabetes, because that is a technology that requires proper training and they were never going to be rolled out in such a short period. The other product that notably has a longer time is tirzepatide, which is more commonly known as Mounjaro. I suspect that that is down to cost, but I am not certain.

Why do the Government want to change the 90 days? The patient’s right to treatment with a NICE-approved product within 90 days will become a right to getting the product when the Secretary of State says so. That is not really a right at all, because it does not give patients any comfort and may mean that products are received later. The Government have put this power into the Bill, so they clearly intend to use it. Given that they have the power to vary on an individual basis, why do they need the power to vary on a blanket basis? Do they intend to extend the 90-day limit across the board? If so, by how much? There is no ceiling. The Committee received written evidence from Henry Burkitt from Oxygen Strategy, who made the point that there is no ceiling, no maximum time, no duty to consult and no necessity for the Secretary of State or NICE to give reasons why a delay has occurred.

The life sciences industry talks about how it wants products to be rolled out. When it is investing and doing research in this country, it wants to see new products rolled out as quickly as possible once they have been approved, and the clause is a sign that roll-out might be delayed. I understand that the Government might want to be able to vary on certain products, but they already can; why do they want to vary on a more general basis? It is presumably to slow down roll-outs, but by how much?

On a point of order, Sir Roger. I am a parliamentary patron and champion of Action on ME. I feel I ought to put that on the record, as we have an Amendment on ME.

Thank you. That is a matter of record. Any other takers? No.

Clause 58 is about the time period for compliance with NICE recommendations on health and social care provision. As we have heard, it will enable that period to be determined by NICE or the Secretary of State.

NICE’s technology appraisals and highly specialised technology guidance play a vital role in ensuring that patients in England can access treatments that are clinically effective and a good use of NHS resources. When NICE recommends a new treatment, the NHS is usually required to make funding available within three months. That means that patients can consistently benefit from innovative treatment.

That said, there are cases where the three-month timeframe is just not realistic. That might be because of affordability pressures or practical challenges such as a stretched workforce. In those situations, a longer implementation period is needed to ensure that complex new treatments can be introduced in a safe way that does not disrupt services for other patients. For example, the period for NICE’s guidance on the drug Paxlovid for the treatment of covid was extended to 12 months to allow time for the NHS to put the necessary routine testing systems in place and train healthcare professionals.

I do not think the hon. Member for Sleaford and North Hykeham raised this issue, but the opposite is sometimes true, and the NHS issues guidance that provides swifter access to medicines and medical treatments. For example, cancer medicines can be funded from the point of a positive draft recommendation. At present, NHS England decides whether a NICE treatment is funded more quickly or in a shorter timeframe, while NICE determines whether the funding period should be extended, typically following a proposal from NHS England. The abolition of NHS England means that those roles and responsibilities will need to be reconsidered. The clause provides flexibility for the final decision on funding timelines to sit with either NICE or the Secretary of State, but it will not mandate which.

To the point raised by the hon. Member for North Shropshire, the Government intend to set out further details of these arrangements in regulations using the enabling power granted by this Bill. Importantly, the clause will not reduce NICE’s independent role in assessing the clinical and cost effectiveness of new treatments, nor will it weaken the NHS’s obligation to provide timely treatment. Instead, it will ensure that decisions on funding timelines remain flexible and sustainable, and that the system is equipped to respond effectively to future pressures.

I will now speak to Amendment 78, which was moved by the hon. Member for North Shropshire. I recognise the vital role that NICE guidelines play in improving quality and consistency of care across the NHS. NICE’s guidance is developed by experts on the basis of rigorous assessment of the available evidence and provides an important benchmark for best practice, including for patients with myalgic encephalomyelitis. I know that the hon. Member intends to withdraw the amendment, but if she were to press it, the Government would not accept it.

To be clear—again, partly to the point of the hon. Member for Sleaford and North Hykeham—it is a long-standing and deliberate position that NICE guidance is not mandatory, which reflects the role it plays in supporting patient care. Crucially, guidelines do not override the professional judgment of clinicians, and it is essential that clinicians retain the flexibility to determine the most appropriate course of treatment for individual patients based on their specific circumstances. It is also important to recognise that NICE guidelines are often complex frameworks for care that must be adapted to local service configurations and patient need. Requiring full compliance with the NICE guideline would remove the ability of local service providers to ensure that ME services are appropriate to the needs of their local populations.

The hon. Member for North Shropshire made some important points about treatment of ME over the years, and many of us have encountered constituents with similar stories. I pay tribute to the hon. Member for Farnham and Bordon for his work supporting constituents with the condition. To be clear, the Department fully recognises the need for more consistent implementation of the NICE guidelines on ME. That is why we are already taking forward practical measures. In particular, the Department and NHS England are developing a service template specification, aligned to NICE’s guidelines, to support commissioners and providers in delivering appropriate services for people with ME. We will continue to work with stakeholders, the industry and the NHS in doing that.

Those steps will help to drive improvement in care without undermining clinical judgment or imposing inflexible statutory requirements. With that, I commend clause 58 to the Committee.

I thank the Minister for her words, particularly on Amendment 78. As I said, I will not press the amendment to a vote, but I hope that the Minister will continue to bear in mind that provision for people with ME is extremely patchy and that a number of our constituents are suffering in the long term. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Clause 58 ordered to stand part of the Bill.