Rare Cancers Bill

Ashley Dalton Excerpts

2nd reading
Friday 14th March 2025 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

First, let me say how sorry I was to hear that my hon. Friend the Member for Edinburgh South West (Dr Arthur) recently lost his father-in-law to glioblastoma. I congratulate him on introducing this legislation less than a year after his election. His wife and children will be immensely proud to see him in the Chamber today. He has the full support of many charities, such as Pancreatic Cancer UK, the Brain Tumour Charity and Cancer Research UK, as well as people up and down the country who have written to their MP urging them to join this debate and vote for the Bill.

I also pay tribute to all those right hon. and hon. Members who have lost loved ones and remembered them so powerfully today. I thank them for the courage that they have shown in sharing their stories. Particularly, I do not think that anyone in this Chamber or watching from the Gallery or beyond could have failed to be moved by the powerful stories from my hon. Friends the Members for Calder Valley (Josh Fenton-Glynn), for Cumbernauld and Kirkintilloch (Katrina Murray) and for Mitcham and Morden (Dame Siobhain McDonagh), to whom I give particular thanks for her tireless campaigning on glioblastoma following the untimely loss of her sister Margaret.

I also pay tribute to those who remembered their constituents. I am delighted that very soon I will be meeting my hon. Friend the Member for Hyndburn (Sarah Smith) and Lorraine to discuss Milly’s Smiles. Let me take the opportunity to add my memories of Joe Chilcott, the son of my friends Tim and Verity and sister to Ellie, who was diagnosed with a brain tumour at the age of 10. It was heartbreaking to lose him when he was just 18.

I thank all the hon. Members who have spoken today. I will seek to address as many of the issues raised as possible. There were so many stories. I recognise the people who were remembered in those stories, those in the Gallery, and the many more watching at home. They are willing the Bill to succeed. On behalf of the Government, it is my great pleasure to pledge our support for the Bill. We are undertaking fundamental reform of the NHS. People living with rare cancers must be at the heart of that change. Rare cancer patients deserve better, and the Bill gives them something that has been spoken about across the House today: new hope.

Let me begin my remarks on what the Bill will do, why we support it and our policy on rare cancers more generally. Clinical research is one of the most important ways in which we can improve healthcare, by identifying the best way to prevent, diagnose and treat cancer. The Bill will encourage the placement of clinical trials for rare cancer in England, by ensuring that the patient population can easily be contacted by researchers, streamlining the recruitment process. It will also ensure a Government review of regulations relevant to orphan drug designation, to ensure that they continue to deliver for patients. Innovations in the Bill will complement the radical actions that we are developing through the 10-year health plan and the national cancer plan to fix the NHS, on which I will expand later.

Research is a key part of this effort, which is why the Department of Health and Social Care, through the National Institute for Health and Care Research, invests more than £1.6 billion a year in health research. In 2023-24, the NIHR invested £133 million in cancer research. As we have heard, rare brain cancers such as glioblastoma have a devastating impact on people and their loved ones. That is why the NIHR announced in September 2024 a new package of funding opportunities for brain cancer research, and established in December a new national brain tumour research consortium, bringing together researchers from a wide range of different disciplines. That is in parallel with a dedicated funding call for research into wraparound care and the rehabilitation and quality of life of patients with brain tumours. We remain committed to accelerating new breakthroughs in high-quality research to drive improvement in the diagnosis, management and treatment of brain and other rare cancers, for better survival rates and patient outcomes.

The hon. Member for Esher and Walton (Monica Harding), my hon. Friend the Member for Mitcham and Morden and others asked how the £40 million promised for brain tumours has been spent. In the five years since 2018-19, the NIHR has invested £11.3 million directly in brain cancer, with a further £31.5 million to enable brain tumour research in 227 studies involving 8,500 people. The commitment remains in place. I can confirm that there is no upper limit on that funding. We are exploring additional research policy options to encourage more clinical trials in early phase research and the development of medical devices and diagnostics.

We have also talked a lot about other rare cancers, including lobular breast cancer, for which we are supporting research through the research infrastructure, including biomedical research centres. We welcome further funding applications for research on all conditions, including lobular breast cancer. We continue to consider whether abbreviated forms of breast magnetic resonance imagining —fast MRI—can detect breast cancers that are missed by screening through mammography, such as lobular and the other types of breast cancers that have been mentioned. We are also supporting the opening of 171 studies on blood cancer, providing an online registry called “Be Part of Research”, which allows users to search for and participate in studies relevant to them.

Clinical trials are a crucial part of cancer research. They provide patients with early access to groundbreaking and possibly lifesaving treatments. The measures in the Bill align strongly with our commitment to that, and aim to streamline clinical trial recruitment processes. My hon. Friend the Member for Mitcham and Morden spoke passionately about how long it takes trusts to negotiate contracts. We recognise that issue and are beginning to make progress. NHS commercial contracting has been standardised, and the national contract value review has reduced study set-up times by 36%, from 305 days to 194 days in the first 12 months’ analysis. We continue in that work.

The hon. Member for Wokingham (Clive Jones) and my hon. Friend the Member for Bootle (Peter Dowd) asked how we are working across borders. We are taking forward the most significant reform of UK clinical trial regulations in over 20 years, while maintaining robust protections and safeguarding for clinical trial participants. The MHRA already authorises cross-border clinical trials, including those conducted in the EU and on UK-based trial sites. The “Be Part of Research” programme uses information from national and international sources.

My hon. Friend the Member for Mitcham and Morden spoke so passionately—we have all commented on her passion and anger. I appreciate her frustration and share her desire for radical action. I think we can all agree that the Government’s announcement yesterday on scrapping NHS England demonstrates our willingness to be bold, take risks and do things differently.

Members raised several other matters. I will come back to them all with more detailed information on those issues, but I do not have the time to do so today. I will address the national cancer plan, however, which was raised a number of times. It is really important to fulfil our goal of transforming cancer care, and we will not just cherry-pick the most common cancers; we need a rising tide that will lift all ships. As a person who is living with an incurable cancer myself, I cannot overstate how deeply I feel the honour and responsibility of being asked to drive forward our work in creating the national cancer plan—it is my absolute honour. But while we take strides to fix cancer services, I am under no illusion that the Government or I hold all the answers, so my plea is for hon. Members to work with us and share their expertise. I ask them please to visit “Shaping the national cancer plan” on the Department’s website and to contribute evidence.

The Government are committed to making a real difference for patients with rare cancers. For those affected by this devastating disease, every discovery, every treatment and every moment matters. We will do all we can to facilitate the passage of this Bill here and in the other place.

Rare Cancers Bill (Money)

Ashley Dalton Excerpts

Money resolution
Monday 30th June 2025 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

I beg to move,

That, for the purposes of any Act resulting from the Rare Cancers Bill, it is expedient to authorise the payment out of money provided by Parliament of:

(1) any expenditure incurred under or by virtue of the Act by the Secretary of State, and

(2) any increase attributable to the Act in the sums payable under or by virtue of any other Act out of money so provided.

I pay tribute to my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing forward this important Bill. The Government support it, and are committed to making a real difference for patients with rare cancers.

[Jim Shannon (Strangford) (DUP)]

Just a quick one—I had hoped to speak to the Minister before she came to the Dispatch Box. In Northern Ireland, rare cancers account for a quarter of all cancer cases in both men and women. Will there be extra money set aside for Northern Ireland, where health is devolved, to deal with rare cancers? It is not just those who have rare cancers who have to deal with them; their families do, too. I ask that question of the Minister genuinely and respectfully.

[Ashley Dalton]

As the hon. Gentleman said, health is devolved. I am happy to write to him with the details of how we expect this private Member’s Bill to be implemented by the devolved Governments.

Question put and agreed to.

Rare Cancers Bill

Ashley Dalton Excerpts

Committee stage
Wednesday 2nd July 2025 Public Bill Committees

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

It is a pleasure to serve under your chairmanship, Mr Stuart. I congratulate the hon. Member for Edinburgh South West on bringing forward this very important piece of legislation. I declare an interest as a consultant paediatrician who has looked after a number of children with rare conditions such as teratoma, rhabdomyosarcoma, Wilms’ tumour and retinoblastoma, to name but a few.

One of the issues with rare cancers, which transposes to rare diseases in general, is that they are often diagnosed late, because people do not recognise that they have symptoms of a rare disease and their health professionals are not as familiar with them because they are rare. The presentation and diagnosis are then late and, as such, the treatment is more difficult. That is compounded further because there has been less research on those topics, so it is not clear what the best treatment for those conditions is. On top of that, the patient may have to travel very long distances to see a specialist who is familiar with the condition, adding both logistical difficulty and cost to that patient’s care.

Some steps are in place to try to improve the situation. The orphan drug regime gives market exclusivity for 10 years, and it provides for lower and refunded fees from the Medicines and Healthcare products Regulatory Agency for the services it provides. Nevertheless, it can still be non-commercially advantageous to put money into developing a drug that is going to be used on no more than a handful of people, however beneficial it is for the individuals concerned.

I welcome the Bill, but wish to make a couple of points. First, in principle it is best that trials are first broached with the patient by a member of their healthcare team. Of course, a member of any given healthcare team—I speak as one myself—will never be aware of all the trials available to all patients at any one time. I welcome the Lord O’Shaughnessy review—commissioned by the last Government and accepted by the current one—which talks about getting a consensus on how best patients can be informed of trials. I wonder whether we should have a system in which patients opt out of not the trial itself but being asked about trials. At the outset, they could be asked, “Would you like to receive information on trials—yes or no?”, so that more people can be aware of how they can contribute. When people are diagnosed with something rare, they often want to contribute to helping others who will come after them.

Will the Minister tell us more about the national cancer plan, which was consulted on earlier this year? I welcome the fact that the children and young people cancer taskforce, which was paused, is being reinstituted. Also, how will the Bill apply to repurposed drugs? Sometimes new medicines are developed for a particular condition, but we often find that medicines can be reformulated and used in a different way to provide a different form of treatment to help individuals with a different condition. How will that apply in respect of both the measures in the Bill and the O’Shaughnessy review?

As a paediatrician, I am very pleased that the Bill applies to children. Overall, I think the Bill is great. It offers hope for many in the future. Will the Minister say something about other rare conditions? As well as rare cancers, people get other rare conditions, and they are affected by the same challenges with research and treatment, and by delays in diagnosis and travel.

Overall, doctors are able to save people’s lives, and improve people’s lives, one at a time, but Parliament and research offer the opportunity to do that on a much bigger scale. I am very grateful to the hon. Member for Edinburgh South West for what he is doing today.

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

It is a pleasure to serve under your chairmanship, Mr Stuart. I congratulate my hon. Friend the Member for Edinburgh South West on his Bill reaching Committee stage. That is a huge achievement for any colleague, but especially for one who has served in this place for almost exactly a year to the day. The Government welcome contributions from Back Benchers, we welcome effective scrutiny from Committees, and we value the vital role that Parliament plays in holding us to account.

In April, my right hon. Friend the Prime Minister announced that clinical trials would be fast-tracked to accelerate the development of the medicines and therapies of the future. Through this new drive, patients will have improved access to new treatments and technologies. We see the Bill as contributing to that ambition. We want to go further for patients with rare cancers, and this legislation will act to incentivise recruitment, oversight and accessibility of rare cancer research, so that NHS patients are at the front of the queue for cutting-edge treatments.

Clause 1 will ensure our regulatory competitiveness. It places a duty on the Government to publish a review of the legislation around orphan drugs within three years of the Bill becoming an Act. The review will examine our legal framework and compare our approach to that of our international partners. We want the UK to lead the world in this space, as the prime destination for clinical research.

Clause 2 will raise the profile of research for rare cancers by placing a new duty on the Secretary of State for Health and Social Care to facilitate and otherwise promote research in this area. The Government want to give patients greater choice and control over their healthcare, and rare cancer patients should have access to research if they choose.

The clause also ensures that the Government will develop a bespoke registry service for rare cancers, to be delivered through the “Be Part of Research” programme—our groundbreaking research registry service provided by the National Institute for Health and Care Research—and that we will appoint a national specialty lead for rare cancers, which we will designate within the NIHR research delivery network, who will have oversight of the overall rare cancer studies portfolio in England.

The Government are committed to going further for rare cancer patients, and that means making clinical trials more accessible. Clause 3 will introduce an innovative solution to allow rare cancer patients to be contacted as quickly as possible about clinical research. The clause creates a new power to allow patient data to be shared from NHS England information systems.

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

Does the Minister agree that keeping a list of people with rare cancers is only any use as long as there are some drug trials? Last night we launched a first trial, in my sister’s memory, for glioblastoma, with every penny raised by people donating, holding bake sales and running marathons. Is that any way to tackle rare cancer?

[Ashley Dalton]

I congratulate my hon. Friend on the launch of the trial in her sister’s name. We do want to see more research and trials coming forward, particularly for rare cancers. She will be aware of the consortium that the Department has developed to work directly with the brain tumour community in particular, to improve the quality and number of research trials that come forward for funding.

[Josh Fenton-Glynn (Calder Valley) (Lab)]

Constituencies in Yorkshire, such as the one I represent, do particularly poorly with research funding—I think 5% of research funding for cancer trials goes to the area. With this Bill and a renewed focus on cancer, I hope we will look to expand the number of research-active hospitals to give people throughout the country a better chance.

[Ashley Dalton]

I should clarify that there is no regional specificity in the allocation of research funding. We welcome all funding bids for research on cancer and rare cancers from anywhere in the country, and I encourage them to come forward.

The new power in clause 3 to allow patient data from NHS England information systems to be shared will allow more patients to be contacted about existing trials. Practically, it will allow us to join up data from the national disease registration service with “Be Part of Research”. As I have said, we are encouraging people to bring forward more research proposals, all of which are considered.

For the first time, patients with a rare cancer could be automatically contacted about research opportunities that are relevant to them and offered innovative new treatments, which means rare cancer patients could have access to research at their fingertips. That is the kind of change that the Government support as part of the shift we are making from analogue to digital—one of the three shifts that will be covered in the 10-year plan that will be launched tomorrow, when more details will become clear.

Clause 4 covers the Bill’s territorial extent. Due to practical and legal differences between the nations, the devolved Governments did not wish to legislate in their individual countries. Our manifesto promised to reset our relationship with the devolved Governments, and we have developed the Bill with them. I am delighted that they expressed their support on Second Reading. Clauses 5 and 6 cover the Bill’s commencement and title. The Government are fully committed to supporting the Bill through the next stages so it can become the Rare Cancers Act 2025.

The shadow Minister talked about the national cancer plan, which I can confirm is being worked on. We have had over 11,000 representations on that plan, which will be published later this year, following the publication of the national 10-year plan for health tomorrow. The children and young people cancer taskforce was launched earlier this year and continues to meet, and has now ensured that young people and children’s voices are part of the taskforce.

[Clive Jones (Wokingham) (LD)]

When the national cancer strategy is published, I hope that part of it will focus on boosting the survival rates for rare cancers. Will the Minister confirm that that will be an important part of the strategy?

[Ashley Dalton]

I can confirm that the overall objective of the whole cancer plan will be saving lives and reducing the number of lives lost to cancer, including rare cancers. The plan will be published later this year.

It is important to note that the Bill is specific to cancer; there will be opportunities to discuss other rare conditions in the future. I thank my hon. Friend the Member for Edinburgh South West for presenting the Bill, and I pay tribute to the charities that are backing him, some of which I had the pleasure to meet recently to discuss further how the Government can better support people with rare cancers. Together, we will improve outcomes for people across our country, and I look forward to working with everybody to get that done.

[Dr Arthur]

I am grateful for all the contributions to debate. The charity partners carefully picked the Committee members, given their interest in this subject, and we can see the benefit of that.

I thank the hon. Member for South Antrim for his efforts to make sure that the legislation works in Northern Ireland. I am also grateful for the comments from the hon. Member for Wokingham and my hon. Friend the Member for Calder Valley, who both asked for more progress in this area generally.

Of course, I have to mention my hon. Friend the Member for Mitcham and Morden. I attended the reception yesterday evening and, first and foremost, it was a fantastic celebration of her sister’s fantastic life. We should be grateful for her. I wish Paul Mulholland and his team all the best with that trial. It really did fill me with hope to hear that update from him.

My hon. Friend the Member for Mitcham and Morden mentioned marathons, so at this point I have to mention my daughter, Ruth Arthur, who ran the marathon in Edinburgh for the Brain Tumour Charity and raised just over £3,000 in the memory of her grandfather. I am very proud of her.

I am grateful for the shadow Minister’s comments and the insight and depth of thinking she brought to the debate. One of the best things about this journey has been working with the DHSC team who are working on the cancer strategy, and seeing how much they care about getting this right. We have often reflected on the point that the shadow Minister made about diagnosis. Too often when we go to events in this place hosted by charities that include somebody with life experience, late diagnosis is where their story starts. It is often avoidable. It is fantastic that the DHSC cancer team acknowledge that. Hopefully our GPs in particular will get more support to make sure that the early signs are not missed and the dots are joined together. It is good to see the Minister nodding vigorously as I say that. I thank her for her leadership right across this policy area and for her support for the Bill in particular.

I thank all Committee members for coming along today and contributing, and I thank the civil servants who helped to draft the Bill. If it passes—and I really hope it does—it will incentivise and create an environment in which more research into rare cancers is fostered, potentially helping us to save, in the longer term, perhaps thousands of lives. What an aspiration that is. I once again commend the Bill to the Committee.

Clause 1 accordingly ordered to stand part of the Bill.

Clauses 2 to 6 ordered to stand part of the Bill.

Bill to be reported, without amendment.