Proposals to encourage life-saving rare cancers research backed by Government

Plans to encourage life-saving rare cancers research and “gift families with more time with the special people that they love” have been backed by the Government.

Labour MP Scott Arthur’s Rare Cancers Bill, which passed its second reading on Friday, proposes to create a database to improve access to clinical trials.

Health minister Ashley Dalton said people living with rare cancers must be “at the heart” of NHS reform, as she pledged her support for the Bill.

The Bill would set up a disease registry with details about rare cancers, and a contact registry to match patients with clinical trials.

A national speciality lead for rare cancers will also be established under the Bill’s proposals, to promote and facilitate research into rare diseases.

During the debate on Friday, Labour MP Josh Fenton-Glynn paid tribute to his brother Alex English who died from a rare salivary gland cancer called high-grade acinic cell carcinoma this year.

He told the Commons: “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.

“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.”

“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.”

He went on to say: “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.

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.”

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”.

During the debate, Labour MP Katrina Murray also became emotional, as she told the Commons through tears that her father had died seven weeks ago.

“More time’s now passed since his death than the time we had between his diagnosis and his passing,” the MP for Cumbernauld and Kirkintilloch said.

“The grief is still exceptionally raw.”

Ms Murray warned that the UK has “one of the most siloed systems – that people in one part of the system often don’t know what’s going on in other parts”.

She said: “We need that to stop.”

Mr 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”

The Labour MP for Edinburgh South West said: “This is an injustice, caused by the relative lack of research developed in this field over many years.”

Health minister Ashley Dalton: “It is my great pleasure to pledge our support to this Bill. We are undertaking fundamental reform of the NHS and people living with rare cancers must be at the heart of this change.

“Rare cancer patients deserve better, and this Bill gives them something which we’ve had spoken about across the House today: hope, new hope.”