At the committee stage of the Health Bill, Helen Morgan MP moved an amendment (tabled by Tessa Munt MP) to clause 58 which would have required that a time limit be set to ensure compliance with NICE guideline NG206 on ME/CFS by Integrated Care Boards and other health bodies. Furthermore, by amending the Health and Social Care Act 2022 (s237) it would mean that the Secretary of State would have to publish an annual statement on compliance with the NICE guideline across the NHS in England.
As she stated
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.
Dr Caroline Johnson Shadow Minister (Dept of Health and Social Care) also spoke
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 bed-bound. 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 judgement. 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.
Karin Smyth MP as Minister of State (Dept of Health and Social Care) stood firm said the Government would reject the amendment for several reasons.
1. NICE guidelines are intentionally not mandatory – “It is a long-standing and deliberate position that NICE guidance is not mandatory” and that the Government believes NICE guidelines should guide care rather than act as legal requirements.
2. Clinicians need freedom to use professional judgement – “Guidelines do not override the professional judgement of clinicians.” and so she argued doctors must retain the ability to choose the most appropriate treatment based on an individual patient’s circumstances.
3. Local services need flexibility – “NICE guidelines are often complex frameworks for care that must be adapted to local service configurations and patient need.” The Government’s position being that health services in different areas face different challenges and patient needs, so full mandatory compliance could limit their ability to tailor services.
4. Mandatory compliance could create inflexible requirements – “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.” Thus, the Minister argued legal enforcement of all NICE guidance could lead to an overly rigid system.
Overall, the Government preferred practical improvements instead and the Minister noted that work was already underway to improve implementation of NICE’s ME/CFS guidance, including the DHSC and NHS England developing a service template specification, aligned to NICE’s guidelines and that the Minister believed that improvement can be achieved through guidance, support and service development rather than new legal duties.
With the Minister already having been informed that the amendment would not be put to a vote, it was formally withdrawn and the committee stage proceeded.
