Part of Rare Cancers Bill – in the House of Commons at 12:06 pm on 11 July 2025.
Scott Arthur
Labour, Edinburgh South West
12:06,
11 July 2025
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 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 They would face treatments that were out of date, and their future would be dominated by uncertainty.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 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 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.
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