MPs could ‘gift families more time’ with rare cancer patients

Lawmakers have the chance to “gift families with more time with the special people that they love”, a bereaved MP has said in a call to encourage life-saving rare cancers research.

Backing the Rare Cancers Bill, Josh Fenton-Glynn paid tribute to his brother Alex English who died from a rare salivary gland cancer this year.

The Labour MP described his brother as “always funny” and “unfailingly kind” in his speech, adding that he would “do anything” to spend more time with Mr English, who died on January 20.

The Rare Cancers Bill aims to promote research into treatments for diseases affecting less than one in 2,000 people.

If it is passed, the Bill would set up a disease registry with details about rare cancers, and a contact registry to match patients with clinical trials.

A person would also need to be appointed the national speciality lead for rare cancers, who will have to promote and facilitate research into rare diseases.

“I tell this story to highlight what we can win, because this Bill can gift families with more time with the special people that they love,” Mr Fenton-Glynn told the Commons on Friday.

“Increasingly, more common cancers are treatable or they’re illnesses people can live with, but for rare cancers we still have a way to go and without focus, we won’t get any further.”

The MP for Calder Valley continued: “Not all cancer journeys have the outcome that we want, and even with this Bill, we’re still going to lose some people.

“But what more investment into research for rare cancers can give is crucial – it can give us time.

“And I’d do anything for more time with my brother.”

Mr English “fit a lot into 53 years”, Mr Fenton-Glynn said, adding: “A lot of us think that our older siblings are rockstars but in my brother’s case that was literally true.

“The band he joined at university called Pure toured with bands like Soundgarden and they reached the top 10 in Japan.”

He said: “I remember the humour and love in the best man speech he gave for me, and I’ll never not be sorry that I’ve written eulogies for my brother but never a best man speech.

“While preparing for Christmas in 2023, I got a call from Alex and he asked if I had a minute to talk, which is unlike him because he wouldn’t 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 be cancer but there were a number of other things that it could have been, and if it was cancer it was likely a very treatable form.”

Mr Fenton-Glynn later added: “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.

“And every update got worse.”

Mr Fenton-Glynn said his brother was admitted to hospital on Christmas Eve “and when he returned home, we knew he was coming home to die”.

He ended his speech in tears, saying that the proposed new law could give cancer patients and their families “more time, better help and an understanding of the journey that people are on, more special moments, be they a Pixies concert, reading a story for a child – Alex read the best stories – and time to organise what you leave behind”, adding the UK could cement itself as a “world leader in tackling rare cancers”.

The Rare Cancers Bill also received backing from Conservative MP Mike Wood, who described his staffer Dan Horrocks’s brain cancer.

“Dan’s journey started with something as simple as headaches,” the MP for Kingswinford and South Staffordshire said, “headaches that no one thought were serious at the time as a teenager”.

He said three GPs misdiagnosed his brain tumour, and did not send him for a scan.

“It was a free voucher for an eye test that saved Dan’s life because it wasn’t until – by sheer luck – an optician noticed something wrong in his eyes that anyone realised the nightmare he was living,” Mr Wood said.

“That optician literally saved his life.”

He later added: “Dan dreams of walking his son to school every day, of being there for every moment that really matters, whether that’s his graduation or his wedding, the moments that every parent should have the chance to see.”

Scott Arthur, who introduced the proposed new law as a private member’s Bill, said rare cancer patients “already have the cards stacked against them, as they are 17% less likely to survive”, adding: “This is an injustice, caused by the relative lack of research developed in this field over many years.”

The Edinburgh South West MP said: “An observation I’ve made on this journey, as so many people have been talking about late diagnosis, and so many of those people are women. And it’s purely anecdotal, but it does seem to be the case.”

The Labour MP added that “so many women are turned away and the GP tells them you’re hormonal, you’re pre-menstrual, or pre-menopausal”.