(2 days, 19 hours ago)
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Sir Christopher Chope (Christchurch) (Con)
I beg to move amendment 1, page 1, line 5, leave out “and”.
Madam Deputy Speaker (Ms Nusrat Ghani)
With this it will be convenient to discuss the following:
Amendment 2, page 1, line 6, at end insert
“and
(c) set out a timetable for implementing any changes in the law recommended by the review.”
Amendment 3, page 1, line 7, leave out “in particular”.
Amendment 4, page 1, line 9, leave out “three” and insert “two”.
Amendment 5, page 2, line 3, leave out “in the opinion of the Secretary of State”.
Amendment 6, in clause 2, page 2, line 7, leave out from “are” to end of line 8 and insert “arrangements in place to”.
Amendment 7, page 2, line 12, after “appointed” insert
“within the period of 6 months beginning with the day on which this Act is passed”.
Amendment 8, in clause 3, page 2, line 33, leave out
“in the opinion of NHS England”.
Amendment 9, page 2, line 40, leave out subsection (4).
Sir Christopher Chope
This is certainly not a trivial Bill; it is a really important piece of legislation, which I congratulate the hon. Member for Edinburgh South West (Dr Arthur) on introducing and pioneering. It was not a Government handout; it was an idea that he thought needed to be the subject of legislation and he has pursued it. We had a fantastic Second Reading debate. There is tremendous interest in the Bill. May I therefore make it clear at the outset that my amendments are designed to try to strengthen the Bill rather than anything else?
I explained my position to the hon. Gentleman yesterday. He said, understandably, that to a large extent he was constrained, because he was trying to negotiate with the Government and with the Department of Health and Social Care, and unless he showed himself to be reasonably compliant, he would not have got the Bill to a state where it could be accepted by the Government.
I note the different positions on this, and I fully understand and respect the hon. Gentleman’s position. The hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) basically said that if she had introduced such a Bill, she would have got so steamed up about it that she would have included a lot more strength and safeguards, and as a consequence it probably would not have got anywhere near being considered on Report. Those are two different approaches. I am, relatively speaking, neutral on the matter—I am a sympathetic supporter of the Bill—but I have a lot of background experience of how Governments always try to give themselves wriggle room, in effect to maintain control over everything, and in my view the Bill could be improved by being amended, with the will of the House, on Report.
We could talk about taking some of my amendments to the other place, but the trouble is that the Government machine may say that there will not be any more sitting Fridays in this House, so if the Bill were to be amended in the other place it might fall completely, because it would need to be brought back here. That is why it is important that the House should consider these amendments now rather than leave them to the other place.
Amendment 1, which is to be read with amendment 2, is a prime example of the point I made earlier. We have a commitment from the Government that:
“The Secretary of State must…carry out a review of the law relating to marketing authorisations for orphan medicinal products that are for the diagnosis, prevention or treatment of cancer”—
great—
“and…prepare and publish a report setting out the conclusions of the review.”
But what is the timescale for that, and what will happen after those conclusions are produced? There is no obligation on the Government to do anything else. The review and its conclusions could be just left on one side. We in the House are in a position to tighten those provisions up and say, “This is not good enough. There should be a timetable for implementing the changes in the law recommended by the review.” That is the essence of the two amendments.
To look at another gap that could be exploited by the Government, the Bill says that the report must be
“published before the end of the period of three years beginning with the day on which the Act is passed”.
I have tabled amendment 4 to say that the period should be two years.
In respect of both those points, I have had a helpful email from Diana Jupp from Pancreatic Cancer UK, who writes on behalf of more than 30 charities representing patients affected by rare and less common cancers. She comments on my amendments. On amendment 2, she says,
“We are keen to push for this change with the Department once we reach implementation stage of the Bill.”
With the greatest of respect to Diana Jupp, we can do this now. Instead of leaving it to her and her colleagues to try to pressurise the Department later, we in this House have the power to change the legislation in the way that I have suggested, so that there would be a timetable set out for implementing the changes in the law recommended by the review.
In response to amendment 4, Diana Jupp says that
“this timeline has been agreed with the Department and in our opinion would tie into the timelines of other developing cancer policy implementation, including the cancer plan.”
Obviously, the most important part of her comment is that the timeline has been agreed with the Department, because if it had not been, the Department and the Minister would not have taken the Bill forward in this way and agreed to it.
On the timeline, I draw the House’s attention to the evidence base set out in the impact assessment. It says that the whole process will take one year. The Department reckons that it will cost £130,000 and sets out how many full-time equivalent civil servants will be involved in it. If it will only take one year, why are we saying that it needs to have three years? That is an example of why we need to tighten up the Bill, because if this is a review that needs to and will be carried out, why do we not get on with it? To suggest that it will take longer than a year is to go against the Department’s own evidence set out in the impact assessment.
The impact assessment says on page 6, under the heading “Mandating a Government review of the orphan drug regulations”:
“This will place a duty on the Government to publish a review which will be a comparison of orphan drug Regulations (specifically Part 5 of the Human Medicines Regulations 2012) and international regulatory approaches to supporting the research and development of orphan medicinal products that are for the diagnosis, prevention or treatment of cancers. Since the review is concerned with orphan drug regulations it is by default covering rare cancers. The findings should be published within 3 years.” On page 7, paragraph 19 on financial costs says,
“It is difficult to estimate the resourcing costs required for the orphan drug review, since the exact scope remains to be agreed. However, we estimate the cost to the Department of Health and Social Care to produce and publish a report on orphan drug Regulations to incur costs of approximately £0.14m in relation to staff resource. This reflects the cost of 0.3 x SCS staff, 1 x FTE Grade 6 or Grade 7 staff, 0.3 x Grade 7 staff and 0.5 x SEO staff for one year.”
That is what the Government say: only one year will be necessary.
In that case, why is my generous amendment, which would restrict the period from three years to two years, unacceptable to the Government? There is a history of dragging of feet at the Department of Health and Social Care, I am afraid; we certainly heard about that on Second Reading. I give the House that specific example of why, on the Government’s own evidence, they should accept the change from three years to two.
Amendment 3 would leave out “in particular” from line 7, which reads:
“In carrying out the review the Secretary of State must, in particular, consider regulatory approaches in other countries.”
The amendment is intended to probe rather than anything else. Why do the words “in particular” need to be incorporated? Surely it would be simpler to say that the Secretary of State “must consider regulatory approaches in other countries”—full stop, period. But that is not how it is at the moment.
Amendment 5 would leave out the reference to the Secretary of State. This is to do with the definition of a rare cancer. Currently, clause 2 would add this wording to the National Health Service Act 2006:
“The research that the Secretary must facilitate or otherwise promote under subsection (1)(a) includes research into cancers that in the opinion of the Secretary of State are rare cancers.”
Why cannot it not just say “that are rare cancers”? Indeed, clause 2 would also add this wording to the 2006 Act:
“In this section ‘rare cancer’ means a cancer that affects not more than 1 in 2000 people in the United Kingdom.”
That is an issue of fact. The Secretary of State should not be able to basically have a veto over the interpretation of what is or is not a rare cancer.
This is just another example of the control freakery within the Department. I am sorry that so far the Minister does not seem to have stood up to officials who have persuaded him, no doubt, that we need the expression
“in the opinion of the Secretary of State”.
Again, the argument is quite straightforward and the people from Pancreatic Cancer UK are on my side, but they are obviously very keen for the Bill to get on to the statute book. We all have to recognise that it is within the Government’s power to prevent it from making any further progress. That is why it will be quite difficult, I suppose, to persuade the Minister to accept amendment 5.
Amendment 6 would leave out from “are” to the end of the line and insert “arrangements in place to” in this statement in clause 2:
“In discharging the duty under subsection (1)(a) in relation to those cancers, the Secretary of State must, in particular, ensure that there are such arrangements in place as the Secretary of State considers appropriate to”.
Why can we not just say “arrangements in place to enable potential participants in clinical trials”, and so on? Why do we need to give the Secretary of State discretion —a veto, essentially—over whether he considers those arrangements to be appropriate? It seems to me completely redundant, unnecessary and, indeed, oppressive. It is counter to the expressed wishes of this House on Second Reading, when there was impatience over the delay, because of the need to get on with this, and suspicion over the failure of the Department of Health and Social Care—under not just this Government but previous Governments, which I would be the first to accept—to actually deal with the crisis involving people who are subject to rare cancers. That is amendment 6. I am trying to beetle through these amendments quite quickly, Madam Deputy Speaker, so that other people can participate in this important debate.
Dr Scott Arthur (Edinburgh South West) (Lab)
I rise to oppose the amendments, but I thank the hon. Member for Christchurch (Sir Christopher Chope) for tabling them, for engaging with the Bill and for our conversation yesterday, which I really appreciated. I understand the stated intent of the proposals, although I am not minded to support them.
Over the last 10 months, I have held dozens of meetings with families, survivors, sufferers, charities, clinicians and legal experts, all with the aim of delivering meaningful change in this field. Those meetings were not so that I could tell people about the Bill, but so that those people could shape the Bill. I fear that if we were to pass these amendments, they would upset the delicate balance of hopes and aspirations that underpins the Bill. It is not just about the Minister, as the hon. Member suggested; there is a whole coalition of people who have different opinions about the Bill, and I do not think any one person has a right to change it in that way, including me. That would be hugely disrespectful and a disappointment to that coalition, but I understand the hon. Member’s points.
The Minister will go through the amendments in turn, so I will focus on three key ones. The review of orphan drugs was one of the hardest-fought things in the negotiations with the Department and charities, but we found a point that we could all agree on. I appreciate that the hon. Member wants it to go further, and perhaps we could speculate about the outcome and better prepare for it, but it is much awaited by the charities and they are grateful for it. I do not want to speak on their behalf, but that is what I have heard from them. That covers amendments 1 and 2.
Amendment 5 is about the definition of a rare cancer, which is an aspect of the Bill that I have not spoken about in any great detail, so it is worth touching on here. The Bill sets the definition of a rare cancer in statute and aligns it with the definition of a rare disease, which is a useful simplification. In future, let us hope that some conditions fall out of that “rare” specification and need less emphasis, and let us also hope that people in the Department look at the treatments that are being developed inside and outside the UK. It is right that there should be a bit of flexibility at the edges of what the Department considers a rare cancer.
The timeline of the review is three years. Again, we spent a great deal of time talking about that. For some while, it was going to be much longer than three years, and all of us want it to be much shorter, but that was the compromise we reached—it was like “Goldilocks and the Three Bears”. We reached that compromise together, so I urge the hon. Member to respect our negotiations on that issue.
Sir Christopher Chope
I hear what the hon. Member is saying, but why does the impact assessment say that the costs are for staff for only one year? If the review will take three years, why are the staff funded for only one?
Dr Arthur
I thank the hon. Member for that question. Of course, the review will not start on day one after passing the Bill. It will take time to get up and running. The existing workload of those staff members will have to be reallocated, and I hope and expect there to be some initial engagement with the sector—both charities and pharmaceutical companies—so a bit of flexibility is required. To be honest, I would love more money to be spent on that review so that we can get more depth and it can have a greater impact. I am sure other hon. Members present would agree.
I hope the hon. Member for Christchurch understands my position and recognises the strength of cross-party and sector-wide support that has brought the Bill this far. I regret not inviting him to take part in the Bill Committee—we would have benefited from some of these comments at that stage—but some of the points that have been raised were discussed in Committee. It was a reasonably long discussion; it did not last for hours, but it was not as short as some. I remain committed to working constructively with colleagues as the Bill progresses beyond today—let us hope it gets beyond today—but I respectfully ask, in the strongest possible terms, that these amendments are not pressed. If they are, I hope Members will oppose them.
Gregory Stafford (Farnham and Bordon) (Con)
To your delight, I am sure, Madam Deputy Speaker, and to the delight of the whole House—especially that of the Government Whips—I am not going to speak for very long on Report, although I am not promising not to speak for some time on Third Reading. I wish to briefly speak to amendments 5 and 8 tabled by my hon. Friend the Member for Christchurch (Sir Christopher Chope). Before that, though, I congratulate the hon. Member for Edinburgh South West (Dr Arthur) on the Bill. I am generally supportive of it and think it is entirely necessary.
Turning to the amendments, my hon. Friend the Member for Christchurch is right. It does concern me that the words
“the opinion of the Secretary of State”
are included proposed new subsection (2) of section 1E of the National Health Service Act 2006. As my hon. Friend has pointed out, proposed new subsection (4) of section 1E and proposed new subsection (5A) of section 261 of the Health and Social Care Act 2012 set out the definition of a rare cancer, and if the Bill passes, that definition will become law. I therefore think there is a contradiction within this piece of legislation: it contains an absolute definition of a rare cancer, but adds some ambiguity by referring to the “opinion” of the Secretary of State. I ask the Minister to explain how both those things can be true. If the Secretary of State decides that there is some other definition of a rare cancer, how can that possibly be in line with the definition that is written into the law?
As the hon. Member for Edinburgh South West has said, the definition that has been included in the Bill—that a rare cancer is
“a cancer that affects not more than 1 in 2000 people in the United Kingdom”—
aligns it with the UK rare diseases framework, which was published by Lord Bethell in the other place in 2021. It seems to me that that is an effective and suitable definition, so again, I ask the Minister whether he expects there to be some other definition. If he does not expect that, why is it necessary to include the words
“the opinion of the Secretary of State”?
The Bill is not even consistent. Proposed new subsection (2) of section 1E of the National Health Service Act 2006 refers to the opinion of the Secretary of State, but proposed new subsection (5A) of section 261 of the Health and Social Care Act 2012 talks about
“the opinion of NHS England”.
As my hon. Friend the Member for Christchurch has pointed out, NHS England is fortunately going to be abolished very soon. When that happens, will we have to pass either primary legislation or secondary legislation to delete those words from the Bill? Would it not be better if we deleted the words “the opinion of NHS England” now? Why will the Minister not consider removing them? If there is some reason why he thinks the Secretary of State might have to change the definition, why are those two clauses of the Bill not consistent?
I hope hon. Members will see that what the hon. Member for Christchurch and I are trying to achieve—certainly through amendments 5 and 8—is to establish a clear definition of a rare cancer. We are aiming to ensure that there is no ambiguity in that definition, and if there is to be ambiguity, we want to at least ensure that the body or authority that is going to make any changes is consistent in the legislation.
Dr Luke Evans (Hinckley and Bosworth) (Con)
I rise to speak on behalf of His Majesty’s official Opposition in support of the Rare Cancers Bill, and to welcome its thoughtful and necessary intervention on behalf of a group of patients who have been under-researched, under-represented, and under-acknowledged for too long. I commend the hon. Member for Edinburgh South West (Dr Arthur) on bringing this Bill forward, and on his ongoing dedication to the issue.
The case for the Bill is clear: rare cancers—defined, in line with the UK rare diseases framework, as conditions affecting fewer than one in 2,000 people—are individually uncommon but collectively account for more than 20% of all cancer diagnoses. However, as we know, patients with rare cancers routinely face delayed diagnosis, limited treatment options and far fewer opportunities to participate in clinical research.
The Bill does not claim to be a silver bullet, but it does mark a significant step forward in how we think about and legislate for research, regulation and data access in rare cancer care. It is focused, proportionate and strategically aligned with the existing NHS and National Institute for Health and Care Research frameworks.
Clause 1 places a duty on the Secretary of State to carry out a review of the law relating to marketing authorisations for orphan medicinal products that are for the diagnosis, prevention or treatment of cancer. It also rightly requires that the review includes comparisons with regulatory approaches in other countries. This is vital. The explanatory notes rightly observe that research into rare cancers is often commercially unattractive because of small patient populations and high developmental costs. If our regulatory environment creates further barriers to entry, patients suffer—not because the science does not exist but because the system does not support it.
The UK’s current approach to orphan designation lacks the pre-authorisation incentives found in systems such as the European Medicines Agency and the US Food and Drug Administration. The review required under the Bill is the opportunity to ask whether we are doing enough to attract the research and development that rare cancer patients deserve.
Sir Christopher Chope
I am not quite sure whether my hon. Friend is responding to the amendments or making a Third Reading speech. I hope he will address the amendments I have tabled, including those that relate to clause 1, about which he has just spoken.
Dr Evans
If my hon. Friend bears with me, I will turn directly to his amendments. It is important to first set out the context, because we must understand the clauses if we are to debate the amendments to them.
Clause 2 makes crucial changes to the Secretary of State’s duty under the National Health Service Act 2006 by stating explicitly that it must include research into cancers that, in the opinion of the Secretary of State, are rare. Although this matters, the research agenda is often driven by numbers and funding scales. By mandating that rare cancers be part of the agenda, the Bill begins to shift the culture towards inclusion, equity and long-term thinking.
I particularly welcome the creation of the national specialty lead for rare cancers, modelling the NIHR’s existing structure of research delivery leaders. This individual will be tasked with promoting and facilitating research, advising on trial design and convening collaboration. The success of this role will depend on it not just being symbolically supported but having a clear remit, adequate funding and a strategic alignment with the wider NIHR research delivery network.
Clause 3 amends section 261 of the Health and Social Care Act 2012 to allow NHS England to disclose information from cancer registries for the purpose of identifying and contacting potential clinical trial participants. This is a significant and necessary step. The Bill distinguishes between a disease registry, like the National Disease Registration Service, and a contact registry, such as Be Part of Research. Making sure that these systems can speak to each other will be of significant benefit when it comes to matching patients with opportunities. Importantly, the clause reaffirms that any such data sharing must remain compliant with the Data Protection Act 2018. As proposed new subsection 6A to the 2012 Act makes clear,
“A power conferred by this section to process information does not authorise the processing of information which would contravene the data protection legislation”.
This is a safeguard that we must preserve, not weaken, if we are to maintain public trust in the system.
At this point I turn to the amendments tabled by my hon. Friend the Member for Christchurch (Sir Christopher Chope). He approaches private Members’ Bills in the way that a jeweller examines diamonds—with a magnifying glass, a steady hand and absolutely no tolerance for flaws. We may grumble as the clock ticks on, but deep down we all sleep better knowing that he is reading the footnotes. This Bill is no different; he has approached it with rigour, and I thank him for his commitment to precision and improving clarity and accountability. As he pointed out, the Bill is not trivial. Therefore, it is not only right, but indeed the duty of this House, to scrutinise closely legislation and amendments laid before us.
To that end, several of the amendments aim to tighten the Bill’s drafting or introduce firmer deadlines. For example, amendment 4 would reduce the timeframe for the review under clause 1 from three years to two. Amendment 2 would require the Secretary of State to
“set out a timetable for implementing any changes in the law recommended by the review.”
I understand the concern that reviews can drift, but the three-year period reflects the complexity of the subject: a UK-wide review of the Human Medicines Regulations 2012, including benchmarking against other jurisdictions and engaging multiple agencies. Compressing the timeline might jeopardise the depth or quality of the analysis. Likewise, a statutory timetable for implementation could constrain the Government prematurely, before the review’s conclusions are even known.
Sir Christopher Chope
I am very grateful to my hon. Friend for his unprompted comments. He will know that the funding is sufficient to staff the review only for one year. If there is only funding for one year, why does it take three?
Dr Luke Evans
My hon. Friend knows, far better than I, not to look at legislation in isolation. The Government will at some point bring forward the cancer plan, which will have a direct crossover with the Bill, so it is right to give the Government the freedom and space to implement the legislation. If we rush it, we could get it wrong, which would be even more detrimental for those who suffer with rare cancers.
Other amendments address definitions and discretion. For example, amendment 5 would remove
“in the opinion of the Secretary of State”
from the definition of rare cancer, and amendment 8 would remove similar wording in relation to NHS England’s discretion. At first glance, the amendments may seem like matters of tidy drafting, but retaining discretion is important, especially as regards rare cancers. Prevalence data can be uncertain or lagging, and flexibility allows for expert judgments about edge cases in which rigid definitions may unintentionally exclude patients from trials or research that could benefit them.
On top of that, there are concerns even about simple definitions. We are still exploring the difference between, for example, pre-cancerous and cancerous cells. If someone goes for a smear, that is what they are told. This is a new area. Who knows what will come up in the future? Simply defining rare cancers on the basis of lagging prevalence data is a risk, and it is therefore right that the Government and the Secretary at State have discretion to direct in one way or another.
However, I would grateful if the Government would answer the question, which has been rightly posed, of who or what will fill the role when NHS England is abolished. It is not clear exactly what that will look like. I have asked the Minister this question several times, in relation to the Mental Health Bill and other areas, and it is a question that this House should rightly ask. Who will be responsible for what, when and why?
That said, amendment 7, which would ensure that the proposed national specialty lead is appointed within six months of Royal Assent, deserves serious consideration. Patients have waited long enough. If the Government are confident that the post can be established promptly and resourced effectively, I would welcome that ambition being stated at the Dispatch Box today.
Finally, I must express my concern about amendment 9, which proposes to remove the data protection safeguard in clause 3(4). Although the provision may be declaratory, in that it reaffirms existing legal obligations, it none the less offers clarity and reassurance. In an area as sensitive as health data, such clarity matters, and the subsection’s removal could cause unnecessary concern, even if the underlying law remains unchanged.
In conclusion, this Bill is not about grandstanding. It is modest in financial cost, careful in its drafting and realistic in its scope, but its impact could be significant. For patients living with rare cancers, and clinicians and researchers striving to support them, the Bill offers real hope—hope for faster access to innovation, hope for more inclusive research and hope for a regulatory system that works for the many, not just the minority. Every patient matters, whether they are one in two or one in 2,000. As we stated on Second Reading and in Committee, we support the Bill, and I thank the House for giving me the chance to explain why.
The Minister for Care (Stephen Kinnock)
I am grateful to my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing this Bill before the House, and I congratulate him on getting it to Report. Amendment 1 allows amendment 2 to be inserted into the Bill. Amendment 2 would require the Secretary of State, having carried out the review described in clause 1, to set out a timetable for implementing changes to the law recommended by the review. However, it would not be appropriate to presume the outcome of the review of orphan drug regulations that is outlined in clause 1. Amendment 2 presupposes that the review will recommend changing the law, and that there are changes the Secretary of State would be willing to support, following a legal consultation. That is not considered appropriate at this stage.
Amendment 3 is unnecessarily restrictive, introducing wording that confines the review unnecessarily. We want to ensure that a thorough review is conducted, and my hon. Friend the Minister for Secondary Care will be working with her officials to ensure that that happens. For amendment 4, the three-year timeframe to prepare and publish the review and the necessary resourcing requirements have been discussed with officials in my Department and at the Medicines and Healthcare products Regulatory Agency. I remind Members that the text in the Bill reflects the statutory deadline, but we will endeavour to publish a report ahead of the three-year timeframe, which has been put forward to be consistent with the MHRA’s overall workplan.
On amendment 5, there are different definitions of a rare cancer, and we worked with my hon. Friend the Member for Edinburgh South West to agree the definition in the Bill as a cancer that affects not more than one in 2,000 people in the UK. However, a level of discretion for the Secretary of State is required over what falls within that definition, since the facts underlying and the data on diagnoses are constantly changing. The amendment would make it difficult to implement the clause in practical and operational terms.
Amendment 6 would remove the ability of the Secretary of State to exercise discretion as to how their duty would be discharged. This is not considered appropriate, since it makes the operation of clause 2 less workable in practice, and would lack the Government’s assessment of what in all the circumstances would be the most appropriate manner of implementation. Amendment 7 would introduce a specific timeframe—just six months—to allow the appointment of the specialty lead. Although I agree that we will need to appoint the specialty lead promptly, introducing a statutory timeframe is not considered workable for practical reasons. There could be unforeseen delays; for example, recruitment processes might delay the appointment beyond six months.
On amendment 8, as mentioned previously there are different definitions for a rare cancer. That is because the data on cancer diagnoses is constantly changing, and decisions on whether the criteria for a rare cancer are met will inevitably involve an element of judgment. The amendment would make it difficult to implement the clause in practical and operational terms.
I turn finally to amendment 9. It is essential that information relating to people’s health and care is shared appropriately, lawfully, and in line with their reasonable expectations. Amendment 9 would remove the provision confirming that any sharing of information pursuant to the powers created by the Bill, and under NHS England’s existing powers, must be in accordance with data protection legislation. That includes compliance with key principles such as lawfulness and fairness. That layer of assurance is essential for the protection of patients, and clause 3 is a standard provision that makes that explicit.
For those reasons, I ask the hon. Member for Christchurch (Sir Christopher Chope) to withdraw all nine of his amendments.
Madam Deputy Speaker (Ms Nusrat Ghani)
Sir Christopher, is it your pleasure that amendment 1 be withdrawn?
Sir Christopher Chope
Is it possible to respond, Madam Deputy Speaker?
Madam Deputy Speaker
Very briefly. I was asking whether amendment 1 would be pushed to a vote or withdrawn, so if you could alert me to that it would be very useful.
Sir Christopher Chope
I will respond briefly to the debate. In so doing, I thank my hon. Friends the Members for Hinckley and Bosworth (Dr Evans) and for Farnham and Bordon (Gregory Stafford) for their contributions.
I listened for what the Minister would say in response to my point about NHS England, but I did not hear the expression “NHS England” come from between his lips, and I wonder whether that was an oversight or whether it was left out of his brief deliberately by officials from NHS England. Amendment 8 specifically deals with NHS England, and my hon. Friend the Member for Hinckley and Bosworth referred to it. Does the Minister’s reluctance to intervene at this stage show that he is in denial about the policy in relation to NHS England? I presume that he is in such denial.
We have had a classic example from the Minister of why the civil service is ruling okay, because it can come forward with a valid objection to every possible suggested alternative and amendment. I do not think that this attitude will be very helpful to the people we are trying to help through the Bill—namely, those who are suffering from rare cancers and who want us to make progress in this area. I will not press any of these amendments to a vote, but I hope that when the Bill gets to the other place there will be more persistent probing, particularly on the issues around NHS England and the definitions.
To give credit where it is due, I was pleased with what the Minister said about the specialty lead. As discussed, we do not need legislation for this anyway. He said he wants to have that dealt with promptly but is fearful of accepting an amendment that requires it to be done within six months because of the possibility of unforeseen delays. I take it from that that he is going to get on with that aspect, and let us hope that that goes faster rather than slower. I beg to ask leave to withdraw the amendment.
Amendment, by leave, withdrawn.
Third Reading
Dr Arthur
I beg to move, That the Bill be now read the Third time.
What a joy it is to say that! Madam Deputy Speaker, it has been 10 months since you pulled my little ping-pong ball out of the goldfish bowl and I started this journey. It is worth remembering that part of the reason behind this Bill was the death of my father-in-law to a rare cancer type called glioblastoma. I am forever grateful to my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for the information she gave me about that condition and how it impacts so many people, because I had always just been focused on my father-in-law.
When the ping-pong ball was pulled out of the goldfish bowl, I got so many emails, many of which were about glioblastoma. The reality is that someone who was diagnosed that day with glioblastoma would more than likely be dead by now—that is how serious the condition is. They would face treatments that were out of date, and their future would be dominated by uncertainty. We should not forget why we are here: to change that reality for people and their families.
This Bill has resonated with many Members of this House and with many people in my constituency. On Second Reading, I shared the tragic stories of a young constituent called Tilly, who passed away from neuroblastoma, and Kira, who has lived with the same condition for a decade—half of her life. I am proud to wear the Solving Kids’ Cancer badge, which Kira’s mother Aud gave me when I last met her.
Today, I also want to acknowledge the many people from across the UK—not just voters in Edinburgh South West—who have contacted me to voice their support and share their stories. One lady travelled quite far to meet me at my constituency surgery in July in Tesco in Colinton Mains. Her daughter was diagnosed with a sarcoma. In Tesco, next to the bleeping self-checkout aisles, she told me about the uncertainty she had faced after that diagnosis and how she had found it impossible even to understand which trials were available, let alone access them. I could see that she had felt powerless and had lost hope. The other reason she was in Edinburgh—perhaps the most important reason—was that she was meeting her ex-husband to scatter her daughter’s ashes in a local park. What is happening to people who face these conditions is quite incredible, so it is right that we seek to address them.
It has been incredible to hear these stories, and when I reflect on them, I can see that there are three recurring themes. The first is frustration. As things stand, our NHS is ill equipped to deal with these patients. Awareness levels are often low among clinicians, which leads to the scourge of late diagnosis. I know that will be addressed in the cancer plan. Families and patients are also frustrated by the limited access to cutting-edge trials—I have already given an example of that. As a result, many rare cancer patients understandably feel like they have to battle not just against the cancer but for attention.
The second key thing that unites these stories is perseverance. Rare cancer patients continually push back and advocate for the changes that they believe must happen—often fundraising or even setting up and running their own charities to help to achieve those goals. Thirdly, each and every story concludes with an offer of help. Rather than asking what I can do for them, because often rare cancer patients know that their options are limited, they want to know what they can do to help with the Bill, help others with the same condition, and help to make this legislation a reality. I believe that is a testament to the transformational role that the Bill could have, and I thank Members who have already made that point.
For far too long, rare cancer patients have been left behind—as medical science makes significant progress in many other complex fields, we have not seen enough progress in this one—but they feel this piece of legislation could mark a meaningful shift for many and turn out to be life-altering, perhaps even lifesaving, for some. There is one statistic that I often mention: rare cancers are not really rare, as they account for 47% of all cancer diagnoses in the UK each year. That equates to 180,000 people. If you are one of those 47%, two things are true: you are more likely to face outdated treatments and you are more likely to die.
The Bill is about justice and creating a more level playing field for those patients and their families. It will achieve that by placing a duty on the Secretary of State to promote research into rare cancers, including appointing a national specialty lead to co-ordinate efforts across the sector. If anybody doubts the need for that, I am sure my hon. Friend the Member for Mitcham and Morden can talk about what has been happening in recent years. The Bill will also increase patient access to clinical trials by strengthening and streamlining the Be Part of Research registry and building a central database of willing patients to help researchers to find trial participants more easily. That is key to attracting trials to the UK.
Lastly, the Bill will trigger a Government review into orphan drugs—I really dislike that phrase; this is about rare conditions—to explore new pathways to incentivise pharmaceutical companies to trial repurposed and innovative treatments for rare cancers. Together, those steps will reduce the barriers to research and attract more trials to the UK, and ultimately lead to faster and fairer access to lifesaving treatments.
I am a humble person, and do not want to be accused of overstating the impact of the Bill, so I will take the liberty of quoting others, if Members do not mind. The Brain Tumour Charity, which has been so helpful, says that the Bill will be transformative and help to
“improve access to clinical trials for people living with rare and less common cancers”.
Another helpful charity, Brain Tumour Research, said that the Bill
“could significantly improve research and treatment pathways for patients.”
Pancreatic Cancer UK, which has been at the core of what we are doing—and, it turns out, has been in correspondence with the hon. Member for Christchurch (Sir Christopher Chope)—says that if the Bill
“becomes law, it has the potential to improve survival rates for pancreatic cancer and other cancers that have been left behind.”
I know the hon. Member for Witney (Charlie Maynard) wanted to be here today but could not be. Instead, his sister Georgie left a message on my social media. She lives with glioblastoma and is a fantastic campaigner in this field. She said:
“Your Bill will make a significant difference, helping tens of thousands who desperately need more research to find a cure.”
No pressure, therefore, for me or us in the Chamber today.
There is also a strong economic argument for introducing this legislation. By creating the conditions for more rare cancer trials to take place in the UK, we can attract investment, stimulate innovation and create new jobs in research, science and healthcare. This is an opportunity to give British science and institutions a global leadership role in tackling some of the most challenging diseases of our time.
I recently had the pleasure of visiting Edinburgh University researchers based in an NHS hospital, the Western general in Edinburgh. I was invited along to see a thing called a robotic microscope. It sounded exciting, and I was looking forward to getting my picture taken next to it, but it is actually a very ordinary piece of instrumentation. I got my picture taken in the end, but I do not think I used it.
It is a fantastic piece of equipment, and it is coupled with a supercomputer. It does what would previously have been a lifetime of analysis in just a few days. It is fantastic that in this House, we have all agreed that Edinburgh University should get a new supercomputer. Analysis that used to take a few days will take just a few hours, moving us closer to finding cures. The United States has shown how investment in this area can stimulate growth through its cancers Act. It would offer a real step change in the UK if we could do the same.
I will draw to a conclusion, because I know others want to speak. There is a strong moral and economic argument for this Bill, and the progress within it is long overdue.
Gregory Stafford
Once again, I congratulate the hon. Member for Edinburgh South West (Dr Arthur) on bringing this essential Bill before us and thank him for the hard work he has done to make sure we get to this place. As I have said many times in this House, early detection saves lives, but without meaningful progress in research we will fall behind other countries making major advances in cancer care.
We call these rare cancers, and they are rare in their individual components, but I have been amazed by how many constituents across Farnham, Bordon, Haslemere, Liphook and the surrounding villages have contacted me in support of the Bill and to share their experiences. Despite rare and less common cancers receiving more than half of UK cancer research funding in recent years, a staggering 82% of patients surveyed by Cancer52 said that they were never offered the chance to participate in a clinical trial. That is not because there is no public support or because the science is not there, but because persistent structural barriers are in the way. The Bill addresses those barriers directly.
If enacted, the Rare Cancers Bill will appoint a national specialty lead for rare cancers within Government, creating accountability, facilitating research and collaboration, and embedding co-ordination across NHS England—while it still exists—the National Institute for Health and Care Research and cancer alliances. Secondly, it will mandate a review of the UK’s orphan drug regulations, aligning incentives such as marketing exclusivity and reduced regulatory fees with international best practice. Thirdly, it will adapt the NIHR’s Be Part of Research platform to create a dedicated, proactive registry that directly links patients with relevant clinical trials.
Let us be clear: this Bill aims to deploy smarter systems, harness the power of artificial intelligence, expand fair access to treatment, end the postcode lottery and ensure that every patient, no matter the type of cancer, has the opportunity to benefit from research and high-quality personalised care. Let us also be clear about the need. Rare and less common cancers account for 47% of all UK cancer diagnoses, yet they are responsible for 55% of all cancer deaths. That means that more than half of those who die of cancer in this country do so from conditions that receive disproportionately less investment, less attention and less hope.
The disparity in survival is stark. For some rare cancers, five-year survival rates languish in the single digits. Only 16% of people diagnosed with cancers of the pancreas, brain, oesophagus, liver or stomach survive beyond five years. By contrast, the five-year survival rate across more common cancers is more than 55%. This is not a marginal issue; this is mainstream cancer care, but it is neglected.
Our international peers are taking action. In countries such as France, Germany and the USA, regulatory frameworks are actively incentivising clinical trials for rare cancers. The UK, meanwhile, has fallen from second to 10th in Europe for access to orphan medicines. We must reverse that decline. We must unlock the potential of our research base, and this Bill gives us the legislative structure to do so.
The NHS 10-year plan, launched with the ambition to modernise our health service, is a wide-ranging document. It rightly champions early diagnosis, innovation and personalised care, and there is no doubt that many of its pillars, particularly those on genomics, digital access and therapeutic innovation, can benefit people with rare cancers, but “can” is not the same as “will”, and “should” is not the same as “must”. The plan sets out a national goal to diagnose 75% of all cancers at stages 1 or 2 by 2028. That target explicitly includes rare and less common cancers. That is an important and necessary ambition but, as campaigners have rightly pointed out, without specific structural action on rare cancers, we will not hit that target; even worse, we will leave some of the most vulnerable patients behind.
As I have said, these are not fringe diseases: these are mainstream conditions that are under-researched and under-resourced. The 10-year plan includes a number of relevant commitments, such as the whole genome sequencing of newborns, supported by £650 million of investment, which could revolutionise early detection of genetic cancer syndromes. Of course, there are some safeguarding issues around that sequencing—I do not want to pre-empt my column in PoliticsHome on Monday, but please read it for more about my concerns over those safeguards.
Likewise, the plan includes the expansion of genomic and pharmacogenomic services in the NHS, giving us the potential to offer targeted therapies for rare cancers. It has a pipeline for advanced therapy medicinal products, including CAR T-cell treatments, which are already being rolled out for certain rare blood cancers. It also streamlines the regulatory pathways through a proposed innovator passport to bring treatments to patients faster.
Those are steps in the right direction, but let me be frank: the plan does not go far enough for people with rare cancers. There is no dedicated rare cancer taskforce, despite repeated calls from Cancer52, Sarcoma UK and the Brain Tumour Charity. There is no specific ringfenced funding for rare cancer services, despite the complex multidisciplinary care that these conditions require. There are no rare cancer-specific training pathways or fellowships, despite clear evidence from clinicians that a lack of expertise is hampering outcomes. The England rare diseases action plan, published alongside the NHS strategy, takes some welcome steps on collaborative networks and data integration, but rare cancers are again folded into a general framework, rather than given the targeted attention they so desperately need.
Uma Kumaran (Stratford and Bow) (Lab)
I am here today on behalf of my young constituent, Imogen, and all young people facing tongue cancer. It is a rare cancer, with frightening and disabling treatment options. I am also here on behalf of my constituent Ros, who lost her mother to pancreatic cancer just 24 hours after diagnosis. Does the hon. Member agree that this House should be united in its support for practical, targeted reforms to advance rare cancer research, which are supported by more than 30 expert charity partners and which so many of our constituents desperately want to see passed into law?
Gregory Stafford
I thank the hon. Member for her intervention. She is absolutely right—I hope this matter has cross-party support in the House. As she points out, a significant number of charities across the country hope that the Bill will pass today, as do I.
That brings me nicely on to what Jane Lyons, the former chief executive of Cancer52, has said:
“Rare and less common cancers make up a massive part of the cancer burden in this country. They need proper structural attention—not just well-meaning inclusion in generic plans.”
She is right. We need dedicated leadership and a single accountable individual or office for rare cancer research and care. We need smarter data platforms, such as the adapted Be Part of Research system proposed in the Bill, and we need a clear strategy for delivering orphan drug access, so that the UK becomes a destination for innovation, not a detour.
When the NHS 10-year plan speaks of transformation, we must ensure that that transformation is inclusive. When we talk about prevention, early detection and innovation, we must be honest about who gets access and who does not. If we are serious about improving outcomes for all cancer patients, rare cancers must not be treated as an afterthought. They must be recognised for what they are: a major public health challenge hiding in plain sight.
The 10-year plan gives us the tools, but it is now up to this House and to Ministers to ensure that those tools are used equitably, strategically and with urgency. That is why I was incredibly saddened to hear that Dr Susan Michaelis, the founder of the lobular moonshot project, died a couple of days ago. Susan’s life and legacy exemplify why this Bill matters. Lobular breast cancer affects 22 women every single day in the UK and more than 1,000 globally. It is not rare in the strict legal sense—more than six per 100,000 are diagnosed annually—but due to the severe lack of research, awareness and tailored treatment, it deserves to be treated as such by our systems.
Susan was due to meet the Secretary of State on 14 July—this coming Monday—to discuss how to accelerate the vital five-year research project she helped to initiate. Thankfully, that meeting will still go ahead. The campaign will not stop. The lobular moonshot project will continue—for Susan, and for every woman still facing this disease without the research-backed options that she deserved.
Susan is far from alone. A constituent recently wrote to me about their mother, who died in 2011, just three years after her diagnosis with glioblastoma multiforme, an aggressive and incurable brain tumour. The average glioblastoma survival time is 12 to 18 months; only 25% of patients survive more than a year, and just 5% live beyond five. Another campaigner spoke movingly about the delays she faced before being diagnosed with a rare kidney cancer—initially misdiagnosed, postponed by covid, and ultimately caught too late.
There are so many rare cancers, and the stories repeat. Rare cancers are not rare to those living with them; they are rare only to the system. According to Jane Lyons, the former CEO of Cancer52,
“Something like 47% of all cancer diagnoses are for rare and less common cancers, but they account for 55% of all cancer deaths…That’s a massive number of challenges—and a huge opportunity for impact.”
Sarcoma UK’s recent report found that one in three sarcoma patients waits more than six months to be diagnosed. Referral pathways are frequently misapplied, and this delay is not a minor inconvenience; in cancer care, it can be fatal.
The Brain Tumour Charity has called the Bill
“essential for any real hope of progress in finding a cure.”
The Less Survivable Cancers Taskforce has declared that this legislation is
“crucial for early diagnosis and equity of access.”
The Urostomy Association, in its rare cancers manifesto, calls for urgent structural change to improve data, screening and outcomes, and Lynch Syndrome UK has spoken powerfully about the opportunities to accelerate genetic-led, AI-informed cancer prevention if rare cancer research is properly funded.
I believe that the Rare Cancers Bill will help to achieve that. It has three core provisions: first, a named lead for rare cancer research so that this agenda has a home in Government and a voice at the top table; secondly, a review of the orphan drug regulations to create better commercial incentives for new treatments and trials; and thirdly, a patient-focused data system built into the Be Part of Research platform so that people are no longer left in the dark about trials that could change their lives. This is not just about saving lives; it is about improving them. It is about ensuring that families are not left with grief and regret when better systems might have given them hope.
Today, as we consider the Rare Cancers Bill, let us remember people like Susan Michaelis and the countless families who have campaigned for change they may not live to see. Let us recognise that rare cancers are not someone else’s problem, but a public health injustice hiding in plain sight. Let us pass the Bill—not just for the scientists and clinicians, but for every patient, and for every parent and partner who has watched a loved one suffer from a cancer few people can even pronounce. This is our chance to correct the imbalance, drive innovation and deliver real, lasting change. If we seize this moment, we can ensure that every patient—no matter how rare their cancer—can access trials, treatment and the possibility of life.
Let us not waste this opportunity. Let us be clear-eyed about the gaps and build an NHS that genuinely serves every patient, with every type of cancer, in every part of this country. Together, let us leave a legacy worthy of those we have lost, and transform care for those still fighting.
Sam Rushworth (Bishop Auckland) (Lab)
I rise to support the Bill, which will make a real difference by improving the detection and treatment of rare cancers. We heard really moving contributions on Second Reading, particularly from my hon. Friends the Members for Mitcham and Morden (Dame Siobhain McDonagh) and for Calder Valley (Josh Fenton-Glynn).
With permission from my hon. Friend the Member for Edinburgh South West (Dr Arthur), I will take this opportunity to press the Minister on research into lobular breast cancer, echoing the comments of the hon. Member for Farnham and Bordon (Gregory Stafford). Twenty-two people a day are diagnosed with lobular breast cancer in the UK; at around 30 in 2,000, it falls outside the scope of the Bill. However, with a UK population of 70 million, 22 a day would popularly be deemed to be rare. More importantly, it has unmet clinical need, and that is what really matters.
Lobular breast cancer was first identified as a separate type of breast cancer 50 years ago, and while breast cancer survival rates have generally improved, research specifically into lobular has been rare and grossly underfunded, and the basic biology of the disease remains mostly unknown. That has led to two effects. First, it is difficult to detect as its web-like structure means that it does not have the typical lump, so it often spreads before it gets detected. Secondly, there is no bespoke treatment, so doctors will throw the kitchen sink at it—radio and chemo—and hope for the best.
Scientists say that a treatment for lobular can be developed; the only reason it has not is lack of funding for research. In May 2023, Dr Susan Michaelis, who had been diagnosed with lobular 12 years earlier, launched the lobular moonshot project. One of the moonshot campaigners is my constituent Katie Swinburne: a mother of three and a popular local school teacher. I met Katie recently in her home, along with Susan and her husband Tristan Loraine.
Susan had deteriorated since we had met on Zoom. She explained that her cancer was terminal—it was too late to save her—but she was determined to spend her last years campaigning for change. We hoped that she would have years to come. Katie, however, still has a hope for treatment and a cure in her lifetime. She hopes to see her children grow old and to carry grandchildren.
This coming Monday, as has been said, we were due to meet the Secretary of State to press the case for £20 million for the lobular moonshot project, which is just £240 for every person diagnosed. We will still press ahead with that meeting, but two days ago Dr Susan Michaelis, the founder of the moonshot project, sadly passed away 14 years after her initial diagnosis. She died peacefully at 5 pm, proudly wearing her lobular moonshot project T-shirt. She was surrounded by her husband Tristan Loraine and some close friends.
The lobular moonshot project is the most bipartisan, politically supported campaign in the nation right now, with 370 MPs from across all parties having called on the Government to fund this vital research. During her 14 years’ suffering with this cruel and brutal illness, Susan was given eight different forms of breast cancer treatment, but none of them was able to stop the disease progressing. None of the treatments she received was based on the basic biology of lobular breast cancer because, as I said, it has not yet been explored.
In the last couple of years, Susan and a team of campaigning women who have been touched by the disease have already raised £125,000 to set up the infrastructure to carry out research at the Manchester breast centre led by Professor Robert Clarke. Her remarkable campaign has touched women across the country. If I may, I will share a few comments about Susan.
As a young girl, Susan always dreamed of being a pilot, but there were few opportunities for women to become commercial pilots in Australia at the time so she completed a degree in marketing and saved up the money to become a private pilot. After teaching people to fly, she finally became an airline pilot, starting off in the challenging Northern Territory of Australia flying to remote communities.
In 1994, when she was 32, Susan started flying the British Aerospace 146 and immediately noticed a strange smell in the aircraft. The breathing air supply was being contaminated with jet engine oil decomposition products. Despite being told that there was nothing to be concerned about, she suffered increasing health effects from those exposures, and three years later in 1997 she collapsed after a flight. She felt like she was having a stroke. Three years of exposure to a complex mix of chemicals including organophosphates, carbon monoxide and endocrine disrupting chemicals had seriously affected her health, and she lost her airline pilot medical certificate. She never flew as an airline pilot again.
Two years later, Susan was partly responsible for the Australian Senate carrying out a year-long investigation into the problem, which concluded that the chemical exposures were affecting flight safety and crew and public health. She was determined that the aviation industry should resolve the problem so she undertook the first ever PhD into the subject, and later qualified as an air accident investigator. She published numerous scientific papers on the subject, and briefed airlines, oil manufacturers, Governments and countless others on the topics.
In 2007, 10 years after her first flight as an airline pilot, Australian Senator O’Brien revealed a secret agreement between British Aerospace, the aircraft engine manufacturer, and two Australian airlines, in which a large sum of money and aircraft parts were given in a settlement for problems relating to oil contaminating the breathing air supply on the aircraft model that Susan flew. After her injuries, sustained as an airline pilot, Susan completed Half Ironman triathlons and became the first Australian to receive the British citizen award for her and Tristan’s work on aviation safety. Last year, the Dr Susan Michaelis rose was launched by Harkness Roses at the Chelsea flower show. Susan has appeared or been portrayed in numerous documentaries and films. She will be greatly missed, but the campaign that she founded will live on.
Monica Harding (Esher and Walton) (LD)
I once more thank the hon. Member for Edinburgh South West (Dr Arthur) for all he has done to bring the Bill forward. We, along with thousands of families throughout the UK, all owe him a huge debt. I am proud to have supported the Bill from the very beginning. I also pay tribute to the ongoing work of the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh), whose inspirational advocacy has set the example on these issues, particularly for new MPs like me.
I do not think I need take up much time restating why the Rare Cancers Bill matters; every hon. Member who sat alongside me in the Bill Committee knows that already, which is why we reported it to the House unamended. The Minister also knows, which is why the Government have repeatedly pledged their support, and organisations working with rare cancers know too. The Brain Tumour Charity describes this legislation as “a Bill of hope” and Pancreatic Cancer UK talks of its potential to transform survival for rare cancers. That potential sits with us today.
The Rare Cancers Bill takes concrete and common-sense steps to facilitate research into rare cancers, to improve the speed and quality of necessary clinical trials, and to help get orphan drugs—medicines often neglected because they target uncommon conditions—to those patients who so desperately need them. I urge the House to advance the Bill and ensure that its provisions become law as rapidly as possible. So much depends on getting this one right. To that end, I briefly remind the House what exactly is at stake today for families, including my own, throughout this country.
When I spoke on Second Reading, I told the story of Group Captain Pip Harding, my brother-in-law, who was diagnosed with an aggressive stage 4 glioblastoma in February 2024. His prognosis was such that he should not be here today. Pip is married with five children. He has served in the Royal Air Force in the Indo-Pacific, in Afghanistan and in Iraq. I am immensely proud of him, not least because of his battle against this devastating diagnosis.
Pip’s family, friends and those who loved him rallied around him. More than 600 of them set up a GoFundMe page to cover the cost of an experimental cancer treatment, oncothermia, which uses radio frequencies to target and treat malignant cancer cells. I am happier than I can say to be able to tell the House that Pip is alive and well, and that the tumour has shrunk from 7cm to less than 1 cm as a result of that treatment. For Pip’s loved ones, of course, that means the world—oncothermia is winning it for him. It means that there is more time for his family and more time for more treatments to come online to get his health back.
Dame Siobhain McDonagh (Mitcham and Morden) (Lab)
It is a matter of delight that the hon. Lady’s brother-in-law is still well and that the tumour has shrunk. But I should say to the House and all Members that that machine, which my late sister campaigned and raised funding for, is currently situated in a private hospital in London because it would get nowhere near an NHS hospital. That is the tragedy of the circumstances that we find ourselves in: our system is so restrictive that we cannot look for new innovations within our NHS.
Monica Harding
I thank the hon. Member for all her advocacy on the issue. She makes an important point, which was made previously: rare cancers are not rare for the victims and their families. That is why we need to bring such treatments into the NHS so that they are available for all, not just for those who set up GoFundMe pages that win tens of thousands of pounds.
Of glioblastoma, Pip said:
“This is a very sad disease of which the cause is…unknown and seems to randomly strike individuals. It would be just amazing if the policy to support these people was changed by this vote and I am personally so grateful to all of you who are so kindly driving this forward.”
His successful story and the challenge of accessing oncothermia underscore equally the importance of the legislation. In sum, innovative new treatments for rare cancers must be brought to patients as fast as possible.
My constituents in Esher and Walton, particularly those whose lives have been scarred by cancer, also feel that very deeply. In the last few days, many have written to me about the legislation to share why its success matters so much to them. One told me of his very young son, who was diagnosed last year with a rare brain tumour that has turned their lives upside down. One told me about his own battle with brain cancer, the excellent care that he has received in the NHS and the fundamentally limited treatment options available to him based on the current state of research and drug development and marketing. Another constituent whose daughter has glioblastoma offered me an important reminder about our work today when they said that
“every important issue or gain has to be fought over fiercely before anything is achieved.”
They are absolutely right.
I will take this opportunity to highlight some other people who have fought and for whom the Bill is vital. My constituent Kate Ford has been campaigning for the lobular moonshot project since she was diagnosed with lobular breast cancer two years. We have already heard how research for that disease has been entirely insufficient and how necessary that project is right now. I am proud to be one of hundreds of MPs on both sides of the House calling on the Government to support it, as we have heard. Like the hon. Members for Farnham and Bordon (Gregory Stafford) and for Bishop Auckland (Sam Rushworth), I was deeply saddened to hear of the death of Dr Susan Michaelis, the project’s founder, this week. My constituent Kate is now carrying forward Susan’s torch and will be at the meeting with the Secretary of State for Health and Social Care on Monday. I call on the Government to answer Susan’s call and finally back the project.
While I have the Government’s attention, I will raise one more important issue. Pip was an RAF helicopter pilot. There are a growing number of veterans who served as aircrew on military helicopters and were exposed to exhaust fumes during their time in the forces, and who have now been diagnosed with rare cancers, including blood cancers. That issue has been raised in recent months by hon. Members on both sides of the House, including my hon. Friend the Member for North Shropshire (Helen Morgan) and the hon. Member for Truro and Falmouth (Jayne Kirkham).
I understand that the Ministry of Defence is currently working to test engine exhaust emissions and to develop a clearer understanding of the health challenges facing veterans, including rare cancers related to their service. Those are welcome steps, but they are insufficient. Although I am conscious that the MOD does not unequivocally recognise the link between exhaust fumes and such cancers, and that I am not addressing the Minister for Veterans, I urge the Minister to do all he can to accelerate the collation of veterans’ health data, which is an essential project that could otherwise drag on, and to support the development of cancer screening programmes for veterans who may be at risk due to their record of serving this country.
Cancer can touch any life. It can come unexpectedly, and it can come cruelly. The Bill offers hope to all those whose cancer has been neglected and disregarded in drug research and clinical trials, but has upended their entire life. It offers us the chance to say to all those people, “You are not alone and you are not forgotten.”
Winning the battle against rare cancers requires us to advance on many fronts at once, so I gently push the Minister, even as he supports the Bill becoming law, to consider the vital calls from the hon. Member for Mitcham and Morden to improve outcomes for brain cancer patients, which have shown too little improvement for too long. Will the Minister commit to a target of getting 200 glioblastoma patients on to promising new clinical trials every year? Will he engage with the private sector to urge pharmaceutical companies to more rapidly make their drugs available for those trials? Will he consider mandating training in brain cancer specific oncology for all doctors seeking to become medical oncologists? Will he also ensure that all neuro-oncology multidisciplinary teams have as a core member a medical oncologist able to contribute their expertise to a patient’s care?
Finally, even as we advance the Bill today, we must not lose sight of the need to do far better by patients with cancer, rare or not. One of the most reassuring aspects of this Bill has been its cross-party support, but while I am here, I want to ask the Minister whether he will listen to Liberal Democrat calls and turn the current target of starting treatment within 62 days of an urgent cancer referral into an iron-clad guarantee? Will he also consider our call to expand the capacity of the Medicines and Healthcare products Regulatory Agency as another way of ensuring that innovative drugs are not snarled up in red tape and that they reach patients faster?
There is much work left to do, but today’s legislation is a real step in the right direction. I take note of the humbleness of the hon. Member for Edinburgh South West, so I will speak about the reach of the Bill and his work. Good politics changes lives and the best politics saves lives. All of us here in this place are committed to do that. I am proud to support this Bill, and I urge Members to vote for all those lives that the Bill could help save and for those families whose lives it will change.
Amanda Hack (North West Leicestershire) (Lab)
I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for his tireless work on the Bill. If anyone gets the opportunity to listen to the podcast he did a few weeks ago, it is well worth listening to—really insightful. He offers the opportunity to address the deep inequalities faced by people diagnosed with rare and less common cancers. In fact, this is the second debate on rare cancers that I have attended this week. The hon. Member for Esher and Walton (Monica Harding) mentioned the previous debate; I had the pleasure of sitting alongside my hon. Friend the Member for Truro and Falmouth (Jayne Kirkham) in that debate on myeloma—a rare blood cancer that affects just a few thousand people a year in the UK. However, there is a concern of the link between the condition and people flying helicopters in the military.
As we have heard, around 180,000 people are diagnosed with a rare or less common cancer every year. Last year, one of those was my constituent Isaac Wilton, and his story will be the basis of my speech. I had the pleasure of meeting Isaac last year. He was diagnosed with a grade 4 glioblastoma brain tumour at just 21—he had a seizure during a workout at the gym. His sister Harriet set up a fundraiser to pay for immunotherapy, and within the first six days they raised £144,000. Isaac and his family have organised various events to support the cause, including charity football matches and community events. Last October, family and friends joined Isaac to walk from Leicester City football club to Coalville clock tower, covering 13 miles—an extraordinary feat. The campaign is now at an incredible £193,000, just shy of its £200,000 goal to pay for Isaac’s treatment. His fundraising not only helps him access life-altering treatment, but raises vital awareness about the urgent need for more brain tumour research, which receives around just 1% of national cancer research funding.
Isaac’s voice matters much more than mine in this debate, and I would like to share something he has written with the House:
“The disease I’m fighting, that gives every single person diagnosed such a poor prognosis, only allows for a little hope. Living a life day to day almost waiting for the bad news. I’m one of the lucky ones. One of the lucky ones who was able to see a community of over 15,000 people come together. Some of which I knew and some from overseas…to raise enough money for me to at least explore other options that I cannot be given through the NHS. Options that might just give me a second chance. But me and others in this fight should be given a fair chance to win this battle because the chances right now are heartbreaking.”
This Bill will give hope to Isaac and others in his position. As we have heard, we are not talking about a minority. In the UK, 47% of cancer diagnoses and 55% of all cancer deaths are from rare and less common cancers. A system that leaves nearly half of cancer patients behind is not a fair system—not for Isaac, not for the father-in-law of my hon. Friend the Member for Edinburgh South West, and not for many others we have heard about today. I will support the Bill today, and I thank my hon. Friend for his incredibly dedicated hard work in bringing forward this change.
Luke Taylor (Sutton and Cheam) (LD)
I thank the hon. Member for Edinburgh South West (Dr Arthur) for his work on the Bill, and all those who have supported its progress.
I rise briefly for two reasons. First, to speak for a constituent, Kate, who is only 40 years old and has an inoperable brain cancer. Kate contacted me this week to tell me about her case and to encourage me to support the Bill. She is under the care of 10 consultants and specialists as her condition worsens. Research on brain cancers and glioblastomas has hardly progressed in 50 years, yet it is the biggest cancer killer in children and adults under the age of 40. The Bill should improve the rate of cancer patients who are offered trials; currently, 82% are not and that is not good enough. The Bill should improve those chances.
I also rise to join the tributes to Dr Susan Michaelis, who passed away on Wednesday, for her campaigning for the better treatment of lobular breast cancer. I met Dr Michaelis in October last year, and was moved by her advocacy for improvements in treatment, and subsequently, by her support for the Bill.
For Kate, Susan and many others, it is important that the Bill passes today. Please do support it.
Dame Siobhain McDonagh (Mitcham and Morden) (Lab)
I do not want to detain the House too long. I just want to put on record my admiration for my hon. Friend the Member for Edinburgh South West (Dr Arthur) in guiding the Bill to this point and now hopefully forward—with a former Member of this House, Julie Elliott, now Baroness Elliott, in the House of Lords. When I met my hon. Friend to berate him about why he should take up this issue, I did not know about his father-in-law, but I have to say how proud his family must be of what he has done here. I mention that point because it is a motivator for all of us. When we understand the true desperation of facing these problems, it can often be the driver to make us work harder for achievement.
I am delighted to say that 10 days ago, with the kindness of Mr Speaker, we launched the first glioblastoma drug trial in memory of my late sister. It will be run by Dr Paul Mulholland, who is, regrettably, too well known to many Members. He is Europe’s leading consultant on glioblastoma, based out of University College London, and the trial will include 16 patients at University College hospital who are newly diagnosed. They will have had no treatment and no surgery, and will be treated with immunotherapy. We are excited and delighted by the trial. It opened last Friday and Dr Mulholland met the first recruit last Monday.
This could be the start of great things, but it is the start of a journey. It is a journey that is incomprehensibly difficult and requires a wonderful set of circumstances: Europe’s leading consultant at a big teaching hospital in London, next to a world-leading university; a group of my sister’s friends who campaigned tirelessly to raise funds, raising over £1 million in the last year—the trial will cost something in that order; and a Secretary of State for Health and Social Care who gave us excellent support and intervened to help us to get to the point of starting the trial.
Those efforts are not available to everybody. We need to change things to get more trials. Without trials, there will be no progress, and I know from my own experience that there will be no progress, even with this brilliant Bill, unless we all, as Members, insist on progress and keep an eye on it. I am so thrilled that so many people, on the Labour Benches and in all parties across the House, are united in their commitment to see progress on glioblastoma. We want to see hope not only for glioblastoma victims but for the victims of all rare cancers. By starting with glioblastoma, we start with the worst. We will not cease our campaign until everybody has a fair chance of a cure.
Andy Slaughter (Hammersmith and Chiswick) (Lab)
It is a great pleasure to follow my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh), and I thank her for everything she has done on this issue. I also thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for taking up this Bill and getting it to this stage.
As I suspect many Members did, I rearranged my diary at short notice to be here, because we thought there might be a risk of the Bill not going through, but I am glad that that does not appear to be transpiring. I am here for three reasons. One is obviously the merits of this Bill, which recommend themselves entirely to all sides of the House. The second is the excellent whipping by my hon. Friend the Member for Mitcham and Morden—I think most of the London parliamentary Labour party are secreted around the building just in case they should be needed. Thirdly, and above all, it is because of my experience of what constituents of mine have gone through, and I am sure that goes for all Members here; the emails were pinging in yesterday saying, “You need to be there tomorrow”.
I want to briefly mention two cases. The first is that of my Chiswick constituent Rob King. I will read a few words of his, because he says what needs to be said more eloquently than I could:
“During early 22 my wife Marie felt extremely tired. We thought three children, busy life. Weeks later she had a diagnosis of pancreatic cancer and we were faced with no treatment options beyond chemotherapy to possibly extend her life by a short while. We didn’t know timeframe, but she had just six months of life remaining. The chemotherapy was brutal. Relentless. She died aged 39 in October 2022, just days off her 40th birthday. What she endured, nobody should have to endure. How she endured this is still beyond my comprehension.
What this misses is the impact on those around her. The parents in their 70s who lost their daughter. The siblings left without a sister, without an auntie for their children. Her husband, me, left dealing with things never planned, never envisaged in life. And most importantly three little children, aged at the time one and a half, five and seven. Having the conversation to say mummy is never coming back will haunt me forever—explaining to an infant what is a rare cancer and why it cannot be fixed because there is no treatment. The impact of this rolls on as they get older.
Rare cancers are not rare. They hugely impact everyone around individuals affected. We urgently need some direction from Government to focus on these, give those affected some hope, and longer term see some results.”
The second case is of Katie Bernard and her son Alex. My hon. Friend the Member for Mitcham and Morden knows this case because she helped with it. Alex suffered from a brain tumour so rare that I think there have only been 100 cases diagnosed around the world. His parents went to extraordinary lengths to get drugs delivered. Almost on a daily basis we were monitoring the pharmacies and hospitals, ensuring that he had treatment. He did get the treatment and it did prolong his life, but sadly Alex passed away on 30 January this year, aged just 23.
There are many more cases like Marie and Alex, and it is for them that the Bill has been brought forward. It is not the only thing that needs to be done, but it is an important step forward. I hope that, by passing it through the House today and it being enacted later this year or early next year, we will make a change. I thank all Members who have contributed or been here today. I know that my constituents and theirs will be listening to this debate and hoping for the Bill’s success.
Dr Allison Gardner (Stoke-on-Trent South) (Lab)
Stella Gilbert, née Forster, was a much-beloved wife, mother, grandmother and sister to my partner, Jim. She died of a rare cancer. Stella was great—my partner’s only sibling, a huge matriarch and, as we found out at her funeral, given to bossing her local vicar about. She had bile duct cancer, which affects approximately 2,000 people a year in the UK.
In the Bill’s terms, bile duct cancer is a rare cancer; the Bill classes rare cancers as those that affect no more than one in 2,000 people, and bile duct cancer affects 0.06 in 2,000. Worryingly, research suggests that that incidence is increasing. I am grateful that the Bill allows for some flexibility, because if bile duct cancer were to pop over that cut-off of one in 2,000, it would go into a different category. That flexibility is appreciated.
Guts UK states that the cause of bile duct cancer is unknown in six to seven out of 10 patients. It is a rare cancer that is increasing in prevalence, often with causes unknown, and nearly 3,000 people a year die from it. Would it not be better therefore not only to prevent this cancer from increasing in prevalence, but to make it even rarer and more curable? The Bill opens the door to that. It will allow for more focus on rare and less survivable cancers.
Research is crucial in tackling cancer, and I am heartened by this Government’s commitment to tackling all cancer types. A national cancer plan is due to be published following the NHS 10-year health plan, and the DHSC has committed more than £1.6 billion for research to the National Institute for Health and Care Research, which is quite rightly treating cancer as a major priority and allocating funding accordingly.
As an officer of the all-party parliamentary group on the less survivable cancers, I am particularly grateful for the commitment to tackling brain cancer, which I have heard a lot about in this place today, in partnership with organisations such as the Tessa Jowell Brain Cancer Mission and Brain Tumour Research. I also welcome the funding call for the brain tumour research consortium, which I read about recently.
I cannot stand in this place and debate a Bill on rare cancers and not mention pancreatic cancer, which is a relatively rare cancer and a less survivable one. It is the fifth biggest cancer killer in the UK. My mum, Breeda, died of pancreatic cancer. She fell ill on a Saturday, was diagnosed on the Sunday and was dead by the following Saturday. One week after that, my father died of oesophageal cancer—not a rare cancer, I believe, but a less survivable one. My sister’s mother-in-law, Doreen, also sadly passed from pancreatic cancer after a year-long battle. We are, indeed, surrounded by cancer. The APPG has addressed the issue of the early detection of such cancers, so we hope to one day hear fewer stories like my mum’s. I thank Pancreatic Cancer UK for its support.
I welcome the Bill, which offers an entirely reasonable set of steps for researching, reviewing and, I hope, enabling the development of so-called orphan drugs—like my hon. Friend the Member for Edinburgh South West (Dr Arthur), I dislike the term intensely. The appointment of a national specialty lead for rare cancers will be so helpful in and of itself.
In passing the Bill today, we will start the journey to a world where wonderful people, like Jim’s sister Stella, my mum Breeda and my sister’s mother-in-law Doreen, do not hear the words, “It is inoperable. It is too late to treat. There is nothing more we can do.” I thank my hon. Friend the Member for Edinburgh South West for introducing the Bill. I will vote for it today, in memory of Stella, Breeda and Doreen.
Harpreet Uppal (Huddersfield) (Lab)
There have already been some emotional speeches, which are already making me cry. I thank everyone who has spoken today. I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing this important Bill. [Interruption.] I have started crying already. The Bill is particularly important to me, because my mum died of a brain tumour. Too many families face a diagnosis that often comes too late, with limited access to specialised care and clinical trials.
Dame Siobhain McDonagh
Does my hon. Friend agree that the Bill’s mechanism relating to orphan drugs is essential? Unless we can get the pharmaceutical industry to find it in its financial interest to start trials, we will not make any progress.
Harpreet Uppal
I thank my hon. Friend for her intervention. I agree with everything she said.
There is no doubt that, for patients and their families, an additional challenge of a rare cancer is navigating the systems themselves, many of which are not built with rare cancers in mind. I know from conversations with residents and organisations in Huddersfield just how isolating that can be. Being told that you have a rare form of cancer, and struggling to get answers or the standard of treatment that others receive, is really difficult. This Bill will play a part in extending the lives of people facing cancer, and it will help their families. Getting targeted research and clear care pathways will be really important, and I have no doubt that improving patient recruitment into clinical trials for rare cancers will mean so much to those families.
Again, I thank my hon. Friend the Member for Edinburgh South West, as well as the Ministers, my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh), and all the charities that have pushed this Bill forward.
Anneliese Midgley (Knowsley) (Lab)
I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur), and congratulate him on bringing this crucial Bill before the House. I pay tribute to him and to every Member who has spoken so powerfully today. When this Bill becomes law, it will ease pain, save lives, and ensure justice and fairness in relation to a disease that is indiscriminate. A number of constituents have contacted me, urging me to support the Bill today. They all have their own stories—their own first-hand experience—each one so moving and powerful. Today, though, I want to relay the story of one of them: Chelsea.
Chelsea is a 31-year-old mother to a 10-year-old boy. She was diagnosed with a rare, aggressive form of sarcoma in April 2024. For more than a year before her diagnosis, Chelsea did everything right—she made repeated visits to the GP and to A&E, clearly presenting with symptoms that should have been checked out, but time and again, her concerns were dismissed. She was not listened to; she was ignored, and that failure led to a devastating delay in diagnosis. By the time she was taken seriously, her cancer had progressed to stage 4. She has endured two major surgeries and has now been on oral chemotherapy for over a year, and will remain on it for three more. Her risk of recurrence is extremely high.
Chelsea’s story is heartbreaking, but it is not unique. I am just thankful that she is still here for her son and loved ones, and I will do everything I can to ensure she gets the best treatment available as quickly as possible. Too many people with rare cancers are forced to fight not just the disease, but the system—a system that fails to recognise the symptoms early, under-invests in research, and leaves patients feeling unheard and alone. I am so proud to support this Bill, and I am so thankful to my hon. Friend the Member for Edinburgh South West for bringing it before the House today.
Barry Gardiner (Brent West) (Lab)
Like everyone else, I want to thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing this important Bill before the House. I had not intended to speak in this debate; I was simply going to intervene on my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh), but she spoke so comprehensively that it would have been wrong to interrupt her. She spoke about the personal motivation that has brought so many of us to the Chamber today. I have just been listening to my hon. Friend the Member for Knowsley (Anneliese Midgley), who spoke about her own situation, as have many other Members.
This year, it is 60 years since my father died of oesophageal cancer and 50 years since my mother died of stomach cancer, both of which are rare cancers. If I said that the treatment in those days was rudimentary, I would be lying; it was cruel. What they went through was awful, and it is appalling that only now, 60 years later, are we in this House trying to change that. This is an historic Bill, and I thank my hon. Friend the Member for Mitcham and Morden—I know what this campaign has meant to her, and to all who loved her sister. I ask the Minister to make sure that everything in this Bill is done as swiftly as possible. We cannot wait any longer.
Sir Christopher Chope
It is a pleasure to follow the hon. Member for Brent West (Barry Gardiner). I echo his tribute to the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh), who continues to be a pioneer in this campaign and is what I would describe as a no-nonsense lady. She has been in this place since 1997, and she has made and continues to make an enormous contribution.
This Bill will hopefully be an exemplar for Members who are successful in the private Members’ Bills ballot. So often, those who are successful in the ballot are told, “Here’s a handout Bill—we need to fill a little niche here in a bit of legislation.” The hon. Member for Edinburgh South West (Dr Arthur) has used his good fortune in having success in the ballot to bring forward something that he wanted to do and that meant a lot to him, but he did not do it selfishly; he did it after listening to a whole lot of other people and realising that this is a subject on which there is deep-seated consensus, unrest and concern among parliamentarians. Full marks to him for doing this.
I was only once successful in the private Members’ Bills ballot, and it was just after the rules were changed, so even though I came third out of the hat, I was No. 17, because it was done in reverse order so that it looked better on television. I think the previous Deputy Chairman of Ways and Means was responsible for that change. I have never had the good fortune of having a Bill that has been able to make progress; it is something I still look forward to and yearn for.
This is a really important subject. When we look at the Second Reading debate, in which I was briefly able to participate by way of an intervention, we can see the strength of feeling.
I go back to the Minister’s response to my amendments on Report. I hope he will be a bit more helpful on Third Reading about the role of NHS England and what will happen. I have paid tribute to him for agreeing that priority should be given to getting on with setting up these research bodies and looking into these issues. It is asking too much for the Government to agree to put those things on the face of the Bill, but I think it is clear from the pressure that is already on the Minister that his Department—however much it may have dragged its feet in the past—is now intent on rectifying that.
Most important of all, we will get the Government’s cancer plan. Let us hope that it will not be on the slow burner—we are promised it before the end of the year, and I hope it will be nearer this end of the year than next year. That could be very important, and as my hon. Friend the Member for Hinckley and Bosworth (Dr Evans) said, it links in with a lot of what we have discussed today.
Cancer needs to be taken more seriously in this country. We need to invest more. We need to get back to the top of the international league table, where we should be, as a leading nation with a very strong economy. I see in today’s news that the economy is shrinking, but that should not be a reason not to campaign to get these cancers shrunk.
Dr Luke Evans
I again thank the hon. Member for Edinburgh South West (Dr Arthur) for his tireless work on this important Bill. It has united the House, and rightfully so, because it speaks to something fundamental: the need for people with rare cancers to be seen, heard and addressed.
The Opposition have supported the Bill from the outset, and as the shadow Secretary of State, my right hon. Friend the Member for Melton and Syston (Edward Argar), and my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson) have said, we will continue to do so today. We would like to thank the charities and campaigners who have worked tirelessly to bring this issue forward: Pancreatic Cancer UK, the Brain Tumour Charity, Cancer52 and many more. Their work has helped to put rare cancers firmly on the agenda, and this Bill is part of their legacy.
I have been on the other side of this, delivering the news, particularly when I worked on an upper gastrointestinal hospital ward as a junior doctor. Delivering the news that someone has pancreatic cancer is one of the toughest things I have ever had to do, and it is worse still for the relatives who have to receive that news. I long for a day when no doctor has to deliver a death sentence to a patient, and this Bill brings that a step closer.
My hon. Friend the Member for Sleaford and North Hykeham spoke in Committee about the repurposing of drugs, and I want to highlight its importance. Treatments that were developed for other conditions may be lifesaving for people with rare cancers. It is vital that the Bill’s scope allows for innovation to thrive. Conservative Members urge the Government to embed the provisions of the Bill in the forthcoming national cancer plan. I hope the Minister will confirm that that will happen, and hopefully he will tell us when it will be published.
Finally, as the expert jeweller, my hon. Friend the Member for Christchurch (Sir Christopher Chope) said on Report—his keen eye for a flaw is important—there is the glaring problem of the pending abolition of NHS England, which poses practical questions about data sharing and, of course, oversight. Conservative Members will do all we can to ensure that the legislation remains workable under the new structures, and I hope the Government will do that too.
The Bill will not solve everything overnight, but it is a serious step forward and a statement that even the rarest conditions deserve our fullest attention. As Maya Angelou said,
“when you know better, do better.”
The House knows better, thanks to the tireless work of the hon. Member for Edinburgh South West, and the Bill will help ensure that we do better too.
Stephen Kinnock
I again congratulate my hon. Friend the Member for Edinburgh South West (Dr Arthur). It is a huge achievement for a colleague who has only served in this place for just over a year to have got a Bill this far. I thank hon. Members across the House who have spoken in the debate so powerfully and movingly, as well as all those who sat on the Bill Committee. We welcome effective scrutiny from Committees, and we value the vital role that Parliament plays in holding us to account. I pay tribute to the charities that are backing the Bill, many of which we are engaging with on the development of our national cancer plan.
The Government want to go further for everyone diagnosed with a rare cancer, and the Bill will act to incentivise the recruitment to, oversight of and accessibility of rare cancer research, so that NHS patients are at the front of the queue for cutting-edge treatments. We know the benefits of embedding clinical research across the NHS and beyond. It leads to better care for patients and more opportunities for our workforce, and it provides a huge economic benefit for our health and care system.
On 3 July, we published our 10-year health plan, which sets out the vision to distribute power to patients and revitalise our NHS, making it fit for the future. The plan will deliver three shifts in care to ensure that the health service can tackle the problems of today and tomorrow, all of which will be key to tackling cancer. Through the 10-year health plan we will ensure that patients receive the most cutting-edge treatment, and that everyone can search for research studies through the Be Part of Research service on the NHS app.
That is why we welcome the Bill, which is aligned with our commitments. It raises the profile of rare cancer research, ensures our international regulatory competitiveness, and allows rare cancer patients to be contacted as quickly as possible about research opportunities. That innovation will be delivered through Be Part of Research, our flagship research registry delivered through the National Institute for Health and Care Research, which allows people from all walks of life to sign up and get involved in research across the UK. I urge everyone watching this debate, and Members in the Chamber who are interested, to sign up to Be Part of Research, and see what research opportunities are relevant to them.
The Government want to give all rare cancer patients access to clinical trials, and greater choice and control over their healthcare. That is why we are delighted to pledge Government support for the Bill. As we set out in our manifesto, the Government are committed to ensuring that the clinical research ecosystem is more efficient, competitive and accessible, and the provisions in the Bill align with that. We want the UK to lead the world in this space as the prime destination for clinical research.
The Government also want to give patients greater choice and control over their healthcare, and rare cancer patients should have access to vital research if they choose to. Once again, I thank my hon. Friend the Member for Edinburgh South West for presenting the Bill, and those Members who served on the Committee. I pay tribute to all the charities that are backing this important Bill. The Government support the Bill, and I look forward to working with Members across the House to improve outcomes for rare cancer patients across our country.
Dr Arthur
With the leave of the House, I thank you, Madam Deputy Speaker, and hon. Members who have contributed to the debate. I will not thank them all as I want to keep an eye on the time, but I will single out my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for helping me to start out on this journey. When I first met her, I thought she was driven by grief at the loss of her sister, but I now know that she is driven by her love for her sister. That is an important difference. I also thank the many people who used the debate to celebrate the life of Dr Susan Michaelis and who continue to support the lobular moonshot project that she left behind. We wish them well. I am sure that we will keep her family in our minds today.
I thank the DHSC civil servants, some of whom are with us today, for their support throughout the Bill’s passage. I must also pay tribute to the Minister for his support, as well as the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for West Lancashire (Ashley Dalton)—we all know who she is—for the comprehensive backing that she has provided throughout. I was at an event on Monday with both the pharmaceutical industry and some of the charities supporting the Bill, and they all have huge respect for the work she is doing.
I really thank the hon. Member for Hinckley and Bosworth (Dr Evans) for his supportive comments on behalf of the Opposition, which went well beyond what I thought was reasonable. [Interruption.] I was trying to phrase that in the proper way. I also thank my hon. Friend the Member for Bury South (Christian Wakeford) for whipping us all on these Friday mornings and helping us along the way—just as he enters the Chamber.
I must also thank the many charities who have been at the centre of this process. There are somewhere between 30 and 40 of them, and I mentioned the key ones earlier. Many hon. Members said—quite politely—that they had received quite a lot of emails over the last few days, perhaps stimulated by the submission of amendments to the Bill. I think that the charities sent about 120,000 emails this week, which is incredible. As hon. Members can imagine, my inbox is a bit of a mess just now, but that tells us how important the Bill is for them. They have waited a long time for this opportunity, and I really thank them for urging me along.
I must also thank Sonia from H/Advisors Cicero for her help in recent weeks as we approached Committee and as we have started to think about the transition to the Lords with some optimism. She and her husband Dan have been fantastic. I must also thank my team in my office for the support they have given me. I thank in particular Noel and Tommy but also Lucie, Hannah, Salim, Maisie, Joe, Xavier and Evie—that is quite a long list of names because we have a slightly complicated situation with our interns just now.
I look forward to the Bill’s continued support. I hope that it will pass today. As has been outlined, when it—hopefully—reaches the House of Lords, it will be in the safe hands of a formidable woman; I have great confidence in her.
First and foremost, I thank residents in Edinburgh South West for electing me and giving me the chance to bring the Bill forward. I did not know it at the time, but without their electing me, I would not be standing here to champion the Bill. I look forward to it receiving support today and to continuing to champion it as it moves to the other place.
Question put and agreed to.
Bill accordingly read the Third time and passed.