Health Bill (Twelfth sitting)
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?