Rare Cancers Bill

Josh Fenton-Glynn Excerpts

Friday 14th March 2025 Commons Chamber

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

I rise to speak about a Bill that will increase research funding focused on more effective treatments for rarer forms of cancer. I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing the Bill.

Like many in this House, I rise today because I have lost a family member to a rare cancer, and I also rise as a member of the Health and Social Care Committee. In the last Parliament, the Committee conducted a Future Cancer inquiry, which recommended that

“the UK should be leading on driving up international action to tackle the poor outcomes for the least survivable and least common cancers. “

This Bill will do that—but, as I say, my reason for speaking in this debate is much more personal. On 20 January this year, my brother Alex English passed away from high-grade acinic cell carcinoma, a form of salivary gland cancer. I tell his story to highlight what we can win, because this Bill can give families the gift of more time with the special people they love.

Increasingly, more common cancers are treatable or are illnesses that people can live with, but on rare cancers we still have a way to go, and without focus we will not get any further. There are more than 700 diagnoses of various forms of salivary gland cancer each year, but my search for related terms in Hansard finds only two mentions in this Chamber in the past 30 years—my hon. Friend has just made the third. One of those mentions was from me, following my brother’s death. That is why we need more focus.

In evidence to that Select Committee inquiry, Cancer52 noted that, while they represent 47% of diagnoses of less common cancers, rare cancers account for 55% of deaths. Members across this House have our own cancer journeys—ourselves, our friends or our loved ones—and I want to talk about my brother’s journey. Not all cancer journeys have the outcome that we want, and even with this Bill we will still lose some people, but more investment into research for rare cancers can give us something crucial: time. I would do anything for more time with my brother.

If you will indulge me, Madam Deputy Speaker, I would like to talk for a minute about the person who Alex was.  The most important thing about Alex was not how he died; it was how he lived and the mark he left on the world. He fit a lot into 53 years. A lot of us think that our elder siblings are rock stars, but in my brother’s case that was literally true. The band he joined at university, called Pure, toured with bands like Soundgarden and reached the top 10 in Japan.

I have always been tremendously proud to call him my brother. I was proud of the horse-drawn narrowboat company he ran in Hebden Bridge, which forms part of many people’s happy childhood memories, and of his subsequent time at the National Trust, where he helped properties to become profitable, worked to restore nature and worked with local authorities. His last major project was creating woodlands near Lunt, in Liverpool. But most of all, I was proud of the person he was. He was always funny—he had a surreal wit. He was unfailingly kind and the sort of non-toxic model of masculinity that the world needs more of. I remember the humour and love in the best man’s speech he gave for me, and I will never not be sorry that I have written eulogies for my brother but never a best man’s speech.

While preparing for Christmas in 2023, I got a call from Alex and he asked if I had a minute to talk, which was unlike him, because he would not generally be over-serious. He said he had a lump on the side of his face that was, in his words, unsightly but not overly concerning. It might have been cancer, but there are a number of other things that it could have been, and if it was cancer, it was likely to be a very treatable form. He instructed me to be aware of it but not make a big deal of it, because, typically, he did not want to worry our mum. Later, it transpired that it was acinic cell carcinoma, but the prognosis was good and they were going to operate. The cancer continued to grow. His operation took 14 hours. The thing about Alex’s tumour is that the version of the illness he had was high grade, which meant that it mutated faster. It is something that has only been identified in about 100 cases, and which no doubt could have been identified earlier had we known more about cancers like his.

Last spring, in my mum’s garden, during a hushed conversation with a different family member to the side, they told me that Alex might only have 18 months to live. I hugged my two-year-old son, who was playing in the garden unaware, because I was trying not to make a big deal of it—but sometimes you need to hug someone. Every update got worse, until I took a day off during the election campaign to visit him at the Christie hospital because his lung had collapsed.

Then, because it is never a straight line, his health improved. He got to sit up there in the Gallery to watch my maiden speech in Parliament. We went to a Pixies concert together at the Piece Hall in Halifax. Then he got worse, Madam Deputy Speaker, and on Christmas Eve last year he was hospitalised again. When he returned home, we knew he was coming home to die. I cannot say enough about his wonderful friends, particularly Matt and Sarah, and my incredible family, who cared for him at the end. All of us would have spent more time at his bedside if we could, because time with people you love is a privilege.

That is what this Bill is about: giving people more time with those they love, perhaps even a full lifetime together. In cases where the cancer is worse and it cannot be treated or cured, it is about giving people more time, better health and an understanding of the journey that they are on. It is about giving people more special moments, be it a Pixies concert or reading a story to a child—Alex read the best stories—and time to organise what you leave behind. People who develop cancers that are rare still matter, and they still deserve more time. The work to help people like Alex in the future must start today.

The Government have a renewed emphasis on tackling rare cancers, in memory of the sister of my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) and of Tessa Jowell, and for countless other campaigners, including those in the Gallery. What we need is focus and determination to respond quickly. I thank the House for indulging me today. Let us be that world leader that is so desperately needed in tackling rare cancers. Let us give families special time with those they love the most. Let us pass this Bill.