Rare Cancers Bill

Jenny Riddell-Carpenter Excerpts

Friday 14th March 2025 Commons Chamber

[Dr Arthur]

Absolutely. Last week, I attended a reception for the Eve Appeal. I was really struck by the fact that early diagnosis was a big feature of what the charity was talking about, and I will come on to that in just a second.

As a consequence of the lack of recognition of the symptoms of rare cancers, too many people are diagnosed too late. Last week, at an event hosted by the Brain Tumour Charity, I met Gabrielle and her wife and children. Gabrielle told me how the neurologist to whom she was initially referred did not recognise her brain tumour symptoms, and told her instead to go home, breathe into a paper bag and get some counselling. If only curing brain tumours was so easy. Reflecting on the comment made by my hon. Friend the Member for South Shields (Mrs Lewell-Buck), an observation that I have made on this journey is that so many of the people who have talked about late diagnosis have been women. That is purely anecdotal, but it seems to be the case. When I was at the Eve Appeal reception, the point was made that so many women are turned away; the GP tells them that they are hormonal, premenstrual or premenopausal.

[Jenny Riddell-Carpenter (Suffolk Coastal) (Lab)]

My hon. Friend is making an incredibly important point, with which many across the Chamber will agree. The statistics are particularly stark for women from black, Asian and minority ethnic backgrounds; they are even more likely to be dismissed.

[Dr Arthur]

I thank my hon. Friend and office neighbour for making that point, which was also made by Eve Appeal. I cannot remember the statistics, but there is a stark difference. I talked about this issue when I met the Minister yesterday and she gently pointed out to me that it is not just in healthcare where women are dismissed as hormonal, premenstrual and so on. I thanked her for reminding me of that in the gentlest possible way.

It is a cruel irony that rare cancers such as Gabrielle’s tumour are typically less survivable, making early diagnosis even more important. Rare cancer patients require early, not later, diagnosis. I have spoken about poor outcomes, lack of progress in developing treatments and late diagnosis. My Bill focuses on the first two points, but I want to acknowledge the need to improve diagnosis, because of comments that have already been made. I am sure that will feature in the cancer plan.

I am the first to admit that, when I was successful in the private Member’s Bill ballot, I found it daunting as a new MP. I thought I had some really good ideas for a Bill, but as soon as my ping-pong ball was picked from the goldfish bowl, I was inundated with calls from constituents, charities and lobbyists, each telling me that their cause was better than any I could think of. I considered many worthwhile causes over the following days, but while having a coffee in Colinton Mains Tesco in Edinburgh South West, I received emails from members of the public who support the campaign of my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh). Just last week I met Oriana, one of the people who emailed me. It was incredibly moving to meet her; it took me right back to the start of this journey. I posted on my Facebook page about meeting her, and straight away somebody said that they knew her and that she had helped them when their family had been faced with glioblastoma. That is a reminder that so many people affected by these conditions turn their loss into something really positive and help other people.

My hon. Friend’s campaign relates to glioblastoma, a type of tumour that took my father-in-law. I felt that the stars had aligned for me. I really do mean that; I really did get that feeling. I want to pay tribute to my hon. Friend. [Hon. Members: “Hear, hear.”] More, more! I know her to be a formidable woman who in this context is driven by glioblastoma taking her sister, Margaret. I did not know her sister at all, which is my loss, but I do know that she shaped my party and she helped change our country for the better, and I know above all that she was loved by her sister.

Glioblastoma is typical of so many rare cancers, and it started me on this journey so I want to talk about it further. My father-in-law, Ivor Hutchison, was a dignified man but glioblastoma did not respect that. He was a technical teacher at Bell Baxter high school in Fife. He was married to Sylvia and they have four daughters, Denise, Iona, my lovely wife Audrey who is in the Gallery —I have just embarrassed her—and Sarah. In time, Ivor and Sylvia had grandchildren: Andrew, our daughter Ruth, Hannah, Matthew, our son Ben, Rory and Sophie. Ivor was not a passive grandfather; he worked hard to ensure his grandchildren flourished.

In September 2017, Ivor began having problems with his speech. My wife Audrey, an NHS nurse, was concerned that it might be a sign of dementia. We all hoped that that was not the case. Following an MRI scan in the November, we received the devastating news that Ivor had glioblastoma. At Christmas he was still very much himself and enjoyed the festivities. Ivor never had a pound of fat on him, but when it came to Christmas time he really did hoover up the food and enjoyed the Christmas meal. It was great to see him that Christmas, but we did feel that it would be his last. Once we entered the new year, he began to lose his mobility, and eventually he was admitted to Adamson hospital in Cupar. In 2018, surrounded by his wife and daughters, Ivor died peacefully, eight months after his first symptoms. He had a good life and his daughters are a fantastic legacy to him, as well as all the pupils he taught at school.

However, as a physically fit man, Ivor should have lived longer: he should have lived to see his birthday last weekend, and if he had done so, he would not have missed two of his grandchildren getting married and his first great-grandchild, Fraya, being born in December last year. I assumed that he had been unlucky with glioblastoma. It was not until I met my hon. Friend the Member for Mitcham and Morden that I learned that only 25% of glioblastoma patients live beyond 12 months after diagnosis, and only one in 20 survive beyond five years. Despite that awful prognosis, as for other rare cancers, the drugs to treat glioblastoma have not changed in decades. That is why I knew in my heart that I needed to introduce a Bill that would help equip those working hard to fight against glioblastoma, and all rare cancers, with the tools they need to further their efforts and, ultimately, save lives.

Over the past 15 years, thanks to the dedicated work of charities, survivors and researchers, we have seen a 10% rise in survival rates for those diagnosed with cancer. Globally, new treatments are being developed and rolled out to patients, improving outcomes and saving lives in our NHS every single day. However, rare cancer patients are being left behind, and I need to explain why. It is not due to a lack of effort by charities or those affected by the disease. In fact, in the Gallery today are members of some incredible charities who are fighting against rare cancers in what is often an uphill battle. I thank them for their hard work in helping me to develop the Bill—they really have helped me—which aims to address the injustices faced by rare cancer patients and their families. For all the people I have met from the charities, their work is much more than a job for them; it is about making a difference to people’s lives, improving survivability and supporting families.

The reason for the uphill battle is that research into rare cancer is much less appealing to pharmaceutical companies when compared with more common conditions. With smaller patient populations, there is an increased logistical challenge in bringing patients together. Currently, we are lacking a sufficient development strategy and there is no single source of patient data, meaning companies must undertake the costly endeavour of finding patients and verifying eligibility. Even if they succeed in running a clinical trial and a drug proves to be an effective treatment, companies face the challenge of selling a drug developed at great expense to a small market. Ultimately, these companies exist to return a profit for their shareholders. Given a choice between investment in potential treatment for a rare cancer or a more a common one, too often rare cancer patients lose out.

Having set out the challenges faced by those diagnosed with rare cancers, let me now address what the Bill aims to accomplish. I will list four key measures and explain their impact: appointing a named responsible lead for the delivery of rare cancer research; creating a single registry of rare cancer trials; creating a single registry of rare cancer patients available for trials; and defining an evidence base for repurposing new cancer treatments. Let me explain in turn why these are important.

First, the Bill would place a duty on the Secretary of State to facilitate and promote research related to rare cancer patients. The appointment of a national specialty lead for rare cancers in the National Institute of Health and Care Research would provide the Secretary of State with advice on the design and planning of research to facilitate collaboration between relevant parties. That will ensure co-ordination and accountability for the delivery of new cancer research in the UK.

Secondly, the Bill would increase access to clinical trials via a service tailored to rare cancer patients. Through the Secretary of State’s new duties, that would be accomplished as part of the existing “Be Part of Research” registry, ensuring that all trials are registered in a single place.

Thirdly, charities and clinicians tell me that more trials would be attracted to the UK if we had easier access to patient cohorts. Establishing a single database of willing patients would remove a significant burden on researchers in finding and verifying eligible people for clinical trials.

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[Jenny Riddell-Carpenter (Suffolk Coastal) (Lab)]

I start by thanking my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing forward this important Bill. I thank the many other Members from across the House who have contributed so movingly today, and my constituents who reached out to me to share their views. I will try to keep my contribution brief, because I know others will want to speak.

In particular, I would like to thank Maria and her daughter Lauren, who told me about Maria’s journey and her fight against leiomyosarcoma—I am the second person today to struggle to pronounce that word—and how that diagnosis, during the covid lockdowns, turned her life upside down. Navigating the pandemic was hard enough; navigating it while one of the people you love most in the world is suffering with cancer must have been nearly impossible.

Maria is still living with leiomyosarcoma and has chemotherapy once a month. As she and her daughter told me, living with cancer is tough enough; when it is a rare cancer, patients live with the fear that the disease will act quicker than the research makes progress. That is why this Bill is so important. We need to close the gap in the treatment so that more people diagnosed with rare cancers have the same chance of survival as those with other cancers.

Another constituent of mine knows the cost of that all too well. He has asked me not to share his or his wife’s name, but instead to tell her story. She passed away last year after being diagnosed with leiomyosarcoma. Despite the best efforts of the oncology unit, the rarity of the cancer meant that it took too long to identify her condition. A year of chemotherapy followed, sadly to no avail.

Although I have two examples of leiomyosarcoma in my constituency, it is incredibly rare. One challenge of that cancer is its genetic variability and the fact that it has many different subtypes. Personalised medicine is particularly important for rare cancers with different subtypes, but because of the small number of patients with leiomyosarcoma, it is extremely difficult, if not impossible, to run robust clinical trials. Research is possible, however, and great strides are being made in the US, showing that better treatment and outcomes are possible. It is vital that we incentivise research of and investment into the treatment of rare cancers and begin to close that gap.

I thank my hon. Friend again for introducing this important debate and the Bill.