Rare Cancers Bill

Debate between Baroness Merron and Lord Winston

2nd reading
Friday 16th January 2026 Lords Chamber

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)]

My Lords, I am delighted to pledge the Government’s full support for this Bill. It is very much aligned with our commitments, it strengthens the research ecosystem and, most importantly—I agree with many comments today—it gives hope to patients and families affected by rare cancers. I am glad that the Bill has the support of the noble Lords, Lord Kamall and Lord Palmer, on behalf of their Benches.

I am most grateful to noble Lords for their points and proposals today. I will be reflecting on them after this debate with the Minister in this area, Ashley Dalton MP, and also Zubir Ahmed MP. I was very touched that so many Peers shared their personal experiences, whether their own or those of their loved ones. I feel that the Bill stands in tribute to the memory of so many, including the late Baronesses, Lady McDonagh and Lady Jowell. It also stands in tribute to the memory of so many who I believe have been brought into the Chamber today by the very touching words and reflections of so many noble Lords. I realise how difficult that is.

I congratulate my noble friend Lady Elliott on her tenacity and clarity in bringing forward this important Bill before the House. I associate myself with the thanks to the many campaigners and charities who have worked on this for so many years, and I know they will continue to do so. My noble friend Lady Morgan made that point particularly clearly. I say to the House, and particularly to the noble Lord, Lord Kamall, that the Government are quite clear that no patient should be left behind simply because their cancer is less common.

The national cancer plan is soon to be published— I heard what the noble Lord, Lord Polak, hopes will be in there, and he will not have to wait too long for it—and it will build on the progress of this Bill. They work very well together, because they both seek to improve outcomes for cancer patients across the country, including those with rare cancers. It is by fighting cancer on all fronts—prevention, diagnosis, treatment and research—that we will make that change.

Much has been said today, and rightly so, about a number of cancers, but I want to say a particular word on how little is currently known about the prevention, diagnosis and management of brain tumours. They remain one of the hardest cancers to treat, and we also know how crucial early diagnosis is for improving survival rates for all cancers, including brain tumours. That is why we have committed to an additional £6 billion capital investment on new diagnostic, elective and urgent care capacity. The noble Lord, Lord Patel, called for genome sequencing for brain tumours. I can say to him that the national cancer plan will include detail on how we ensure that patients have access to the latest treatments and technology, including genetic treatments.

Important points were raised by the noble Baroness, Lady Grey-Thompson, and the noble Lord, Lord O’Shaughnessy, among others, about how the £40 million commitment to NIHR funding for brain tumour research will be met. That commitment absolutely remains in place, but there is no upper limit to our funding of high-quality brain tumour research and we are committed to exceeding the £40 million target. I should also add that there is no limit to our funding of high-quality childhood cancer research.

Clinical research, rightly, is at the core of this Bill. It is one of the most powerful tools that we have. I believe that the Bill will complement the ambitions in our 10-year health plan and the forthcoming national cancer plan to embed that research across the NHS and give patients greater control. It will make it much easier for researchers to connect with patients with rare cancers and streamline the recruitment for clinical trials and will ensure our regulatory framework delivers for those who need it most.

The noble Lord, Lord O’Shaughnessy, and the noble Baronesses, Lady Finlay and Lady Browning, raised the database. The database is live across the UK; it is a UK-wide registry. I urge everyone to sign up to be part of research in order to connect with trials. The noble Baroness, Lady Browning, also asked about strengthening the orphan drug regulations. We must ensure that there is a detailed review before any decisions are made on the regulations.

I say to the noble Lord, Lord Polak, that we will ensure that we do all we can to improve how we use data for research and raise public awareness of consent. I certainly fully support the digitisation of advance consent, which he referred to.

It is key that we incentivise research and continue to support and develop cutting-edge research for rare cancers and other rare diseases through the NIHR. For example, in December, we launched a pioneering new brain tumour research consortium to accelerate research into new treatments through the NIHR, which is investing an initial £13.7 million, with significant further funding expected to be announced shortly. We are also ensuring the effective co-ordination of research from other funders and charities through the Office for Strategic Coordination of Health Research, which is chaired by the noble Lord, Lord Kakkar.

We published Transforming the UK clinical research system: August 2025 update outlining how we fully delivered against all the recommendations in the review conducted by the noble Lord, Lord O’Shaughnessy, who I thank for his work on commercial clinical trials. We will go still further to deliver on our 10-year health plan and cut clinical trial set-up times to under 150 days by March—a target driven by the Prime Minister. We are taking forward the most significant reform of clinical trials regulations in more than 20 years. We need a more efficient and adaptable regulatory framework, and that is what we will deliver.

Concerns were raised about timings of implementation and market authorisation of clinical trials. The timeframe in the Bill is a legal boundary, and we certainly expect to publish the report rather sooner. The noble Lord, Lord Mott, asked about the UK’s ranking for approving orphan drugs. The lessons learned from the review of the regulations will inform how we best approach the regulation of UK orphan medicines.

On the abolition of NHSE, work is under way on primary legislation. That will enable its functions, powers and responsibilities to transfer formally to the department. That will include responsibility for this Bill. I heard loud and clear from a number of noble Lords the wish to see a speciality lead for rare cancers in post and getting to work as soon as possible. I certainly agree on their importance. I heard what the noble Lord, Lord Blencathra, said, but this is the way we will go forward. We will ensure that that appointment is made as soon as possible.

As I said at the outset, many useful points have been made. They will be part of our consideration, but the main thing I want to say is how glad we are to fully support this Bill and how we will do all we can to help progress it. It reflects ambition and our support for the goal for the UK to be the global leader in clinical research, which noble Lords called for. This is about patients, particularly those facing rare cancers. They deserve and need greater choice, speed and opportunity to participate in vital studies. Every breakthrough is key because it means that we can maximise people’s access to the benefits. I thank my noble friend for bringing the Bill forward, all noble Lords who have contributed and all those who continue to champion its cause.

[Lord Winston (Lab)]

I apologise for keeping the House waiting a moment longer, but I want to ask the noble Baroness something very important. This has been a fantastic debate of a high standard, in the best interests of the House of Lords. There was a great focus on focused research on rare cancers, but does she agree that continued basic research on cell biology, embryology and a whole range of things about cell development, which has contributed so much to cancer research and to rare cancer research, is also important?

[Baroness Merron (Lab)]

As my noble friend said, this has been an extremely valuable, well-informed and moving debate. At present, we are focusing on rare cancers because of the nature of the Bill, but I absolutely take his point about the importance of work outside rare cancers and the overlap with that. I thank him for it.

Emergency Adrenaline

Debate between Baroness Merron and Lord Winston

Monday 15th December 2025 Lords Chamber

[Baroness Merron (Lab)]

I know that the noble Lord always seeks to be helpful. That is indeed a helpful suggestion, which I will gladly take away, but I will not be able to give a commitment, as the noble Lord is aware.

[Lord Winston (Lab)]

My Lords, I was a little unhappy with the answer to the question from the noble Lord, Lord Patel. My understanding, having seen medical students being given injections of adrenaline during a physiology class to see what would happen—in larger doses than you would probably need in this case—is that they might feel a bit faint. I would have thought that giving a non-injection method is even safer and that the likelihood of side-effects is much lower. Is that not fair?

[Baroness Merron (Lab)]

I am sure that is fair and I certainly bow to my noble friend’s expertise in this regard. I thank him for that, and I thank the noble Lord, Lord Patel, for his question. However, I feel a little inadequate on the medical front here.

Brain Tumours: Causes and Treatment

Debate between Baroness Merron and Lord Winston

Monday 24th November 2025 Lords Chamber

[Baroness Merron (Lab)]

It is an important point, as the noble Lord, Lord Sharpe, raised. As I said, the national cancer plan will give that opportunity to address challenges and needs such as those the noble Lord raised. We are also establishing a brain tumour research consortium through the NIHR, which will bring together researchers from different disciplines. The scientific advancements it will drive will be how to prevent, detect—to the point raised by the noble Lords—manage and treat brain tumours. That will also be of great assistance.

[Lord Winston (Lab)]

My Lords, the Government should be congratulated on trying to improve their work on brain cancer. Talking about treatment, one of the issues is that one of the greatest advances and most important areas is brain imaging using magnetic resonance imaging, PET scanning and even electrical recording in a sophisticated way, but access to these important technologies still seems somewhat deficient. Will the Minister say whether the NHS has plans to increase access to brain imaging? It seems a very important area in treatment.

[Baroness Merron (Lab)]

We certainly want to see services properly available across the country and people not being disadvantaged because of where they live or what the services are. Again, from what I know of it—we will soon see it—the national cancer plan will improve every aspect of cancer care, including outcomes for those with brain tumours and access to the services my noble friend outlines.

NHS: Private Equity

Debate between Baroness Merron and Lord Winston

Wednesday 25th June 2025 Lords Chamber

[Baroness Merron (Lab)]

I understand the noble Baroness’s concern, but perhaps I could assure her and your Lordships’ House that it was decided this week by the board of Assura to recommend to shareholders an offer from Primary Health Properties, which is another UK real estate investment trust, similar to Assura, which is focused on primary healthcare premises. It is the case—or was the case, depending on how you look at it—that there was another bidder for Assura: KKR. As the noble Baroness said, KKR is an American private equity and investment company, but it seems very unlikely to be successful at this stage. The assurance I can give the noble Baroness is that a change in ownership does not affect the legal status of existing lease arrangements. I would also say that the ownership of the general practice estate is very much a mixed model in which GP practice buildings can be leased from a variety of landlords, including companies such as Assura, which actually constitute quite a small proportion of the overall estate.

[Lord Winston (Lab)]

My Lords, given that there are a vast number of overseas investments in different areas of private medicine in London—for example, in vitro fertilisation, much surgery, and so on—can the Minister tell us whether there is any fundamental difference between this and Assura healthcare? Providing it is under the proper regulation of the NHS—which I believe it is—there is no particular harm that we can identify.

[Baroness Merron (Lab)]

My noble friend is quite right. What matters is the assurances that are in place to enable provision to be made, whether that is on the estate or on services, as my noble friend refers to. I can certainly assure your Lordships’ House that in preparation for this discussion of course I asked the question: are there risks? I am assured there are no risks about which we need to be concerned.

Apricity Fertility Closure

Debate between Baroness Merron and Lord Winston

Wednesday 12th March 2025 Lords Chamber

[Baroness Merron (Lab)]

As the noble Baroness will be aware, in November 2023 the HFEA published Modernising Fertility Law, in which it made a number of recommendations for urgent change, including around its regulatory powers. I will meet the HFEA chair and CEO tomorrow, and we will further discuss the regulatory challenges that the HFEA faces. I assure the noble Baroness that the Government are currently considering the HFEA’s priorities, including its role with digital clinics such as the one referred to, should an opportunity for legislative reform arise.

[Lord Winston (Lab)]

My Lords, the noble Baroness, Lady Owen, asks a most important Question, and I am grateful to my noble friend the Minister for answering it at least partially. I argue that much more of an answer is needed. Apricity advertised a success rate that was literally impossible; indeed, it was more than double the national success rate. Again and again, patients are being sucked into in vitro fertilisation—which may not always be the best treatment for them, just because they are infertile—because they think they will have a better chance of success than they actually have. It is time to be much more rigorous. As my noble friend the Minister is seeing the HFEA chair tomorrow, will she ask her how well the HFEA feels it is auditing the results it gets from clinics? In my view, many clinics are exaggerating, in all sorts of ways, what the success rate is.

[Baroness Merron (Lab)]

My noble friend raises an extremely important point, which I will of course cover in my meeting tomorrow. It may be of interest to know that the Advertising Standards Authority and the HFEA issued a joint enforcement notice in 2021 to ensure that fertility clinics and others were aware of the advertising rules and were treating consumers fairly. That remains in place. The ASA periodically reviews compliance with its rules. Its recent review in the fertility sector found far fewer absolute claims than it had found previously and that the level of compliance is good. That is not to say that it is good in all cases, and I agree with my noble friend’s point.

National Cancer Plan

Debate between Baroness Merron and Lord Winston

Monday 10th February 2025 Lords Chamber

[Baroness Merron (Lab)]

The noble Lord makes an important point about what I would call unnecessary obstacles to innovation and technology—something which the noble Lord, Lord Kamall, also raised. I assure the noble Lord, Lord Kakkar, that engagement with industry is extensive. We seek to identify blocks to improving healthcare provision in this country so that we can take the necessary steps. I agree that there are obstacles. We will continue to identify them—working with industry, which is crucial—and to seek to fix them.

[Lord Winston (Lab)]

My Lords, the Minister mentions the amount of money being spent on cancer research, but it is a small proportion compared with what the life sciences actually earn in Britain through patent and basic research. As UKRI recently pointed out, £3.7 billion has been raised as a result. Does the Minister agree that the Government should perhaps consider reinvesting some more of that money into much-needed basic research, which is currently regarded as being underfunded, with very many projects not being funded as they should be?

[Baroness Merron (Lab)]

As my noble friend is aware, the NIHR very much welcomes funding applications for research into any aspect of human health, including all cancers. As with other government funders of health research, it does not allocate funding for specific disease areas. My noble friend is well aware that applications are subject to peer review and judged in open competition—in other words, to make awards on the basis of the importance of the research to patients and on value for money. I appreciate his observation about investment. It is an area to which we are committed and will continue to be.

First-cousin Marriage

Debate between Baroness Merron and Lord Winston

Monday 20th January 2025 Lords Chamber

[Baroness Merron (Lab)]

The noble Baroness is right that consanguineous unions are decreasing. While it had the best data, the NIHR-funded study, Born in Bradford, to which the noble Baroness and I have referred, found that between 2000 and 2010, 39% of British Pakistani couples in Bradford were first cousins. However, that reduced by 27% by 2019, for the reasons suggested. Driving change across whole ranges of areas makes a difference, but it is important that we keep this in perspective and make any communications and support absolutely appropriate.

[Lord Winston (Lab)]

My Lords, surely, this Question is an example of the great value of our genetic science in Britain, and the excellence of the National Health Service in this area. In the Midlands, as the noble Baroness has mentioned, these diseases are common, but the progress we have made in their diagnosis and treatment—and, to some extent, prevention—has been quite remarkable and will continue. I have to add that many of the diseases are extremely rare in such families, and therefore what you could do about cousins in every case would be impossible, but the information being given is exemplary in most cases.

[Baroness Merron (Lab)]

I am grateful to my noble friend for those very informed observations, and I share the assessment that he has made.

Puberty-suppressing Hormones

Debate between Baroness Merron and Lord Winston

Monday 16th December 2024 Lords Chamber

[Baroness Merron (Lab)]

I thank the noble Baroness for bringing her expertise directly into the Chamber. We are very glad that she is in the House to do so, and she has actually answered a number of the points better than I ever could.

I will emphasise one point that I am particularly interested in, because I know it has been raised a lot, about why the legislation is being laid in respect of the use of medicines just for gender dysphoria. The noble Baroness, Lady Cass, referred to this. It is really important to emphasise that the medicine might be the same, but the fact is that it is not licensed for gender incongruence or dysphoria—that is the key point. These medicines have not undergone that process, which means that safety and risk implications have not yet been considered. It is true that there are licensed uses of the medicines for much younger children or for older adults, but the issue here is about adolescents, and it is an entirely different situation.

[Lord Winston (Lab)]

My Lords, perhaps I might return to the conventional asking of a question to the Minister—a very quick question. There are a number of practitioners who are considering, if not giving, sex steroids to patients who are requesting gender reassignment; either oestrogen or progesterone, or the equivalent male hormone. Have the Government yet considered how patients will be treated in this situation? There are certain, clear dangers involved.

[Baroness Merron (Lab)]

I understand the point my noble friend rightly raises, and I emphasise again that what matters here are safety considerations—particularly when we are talking about children and young people—but also the evidence in respect of treatments, that there should be the prescription only of medication which is safe and appropriate to the actual patient and situation.

Bread and Flour Regulations 1998

Debate between Baroness Merron and Lord Winston

Wednesday 11th December 2024 Lords Chamber

[Baroness Merron (Lab)]

Patient safety is at the forefront of this. I do not want to look backwards, but I gently suggest that there are all sorts of reasons for delays. Still, we are where we are now, and what is important is moving ahead. We are working closely with the Chief Medical Officers across the UK. We are very much in lockstep with the devolved Governments, and I think that will also assist.

[Lord Winston (Lab)]

Given the Government’s excellent initiative to reduce the serious risk of neural tube defects, which cause such despair to so many people, will they tell us where we have got to with fluoride addition to the water supply to prevent dental disease?

[Baroness Merron (Lab)]

My noble friend is right, and we anticipate that this policy will reduce the number of neural tube defects in pregnancy by around 200 a year. Those are life-changing brain and spinal defects, such as spina bifida. The question about fluoridation goes a little wider than I had anticipated.

[Lord Winston (Lab)]

I am sorry.

NHS Hospitals: Apheresis

Debate between Baroness Merron and Lord Winston

Wednesday 9th October 2024 Lords Chamber

[Baroness Merron (Lab)]

What the noble Baroness says is very true and I certainly can give the assurances she seeks.

[Lord Winston (Lab)]

My Lords, I have scanned the literature because I looked at this Question on the Order Paper, and I noticed that there seem to be very few completed trials showing clear efficacy of stem cell transplantation, except in the case of blood dyscrasias such as cystic fibrosis. Would the Minister be kind enough to let me know how many trials are being conducted in this country? If she does not know, maybe she could tell me in due course.

[Baroness Merron (Lab)]

I thank my noble friend for raising that important point. I will be very pleased to look into this further, so I can answer him in full.