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.