Rare Cancers Bill

Baroness Grey-Thompson Excerpts

Friday 16th January 2026 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I thank the noble Baroness, Lady Elliott of Whitburn Bay, for bringing this Bill to the Chamber today and I pay tribute to two Members who are no longer with us, Baroness McDonagh and Baroness Jowell, who both had a huge impact on my career.

For about the last year, I have been working with Ceri and Frances Menai-Davis and their campaign to highlight the challenges that face families who have a terminally ill child. Their website, It’s Never You, clearly highlights many of the issues. Their son Hugh had rhabdomyosarcoma, a rare cancer affecting muscles attached to bone, which spread throughout his abdomen. He was diagnosed in late 2020 and passed away in September 2021 at the age of six, after undergoing intensive treatment including radiotherapy. His parents described receiving the diagnosis and the trauma they experienced as being thrown into an ice bath with a concrete weight tied around your feet. Through my work with them, I have an amendment to the Children’s Wellbeing and Schools Bill, which may be debated on Monday, asking for more research to find the true extent and impact that rare cancers have on families and seeking to require the Secretary of State to report to Parliament on the barriers preventing parents being at the bedside of critically ill children.

The Journal of Pediatric Psychology and the Lancet Psychiatry have said that 30% to 50% of parents with critically ill children meet the diagnostic threshold for PTSD. The BMJ Open has said that parents are more likely to experience anxiety, depression and suicidal thoughts, and mothers have a 50% increase in mortality. While there is no current target for research or funding allocation to be spent on paediatric cancer research, it appears that only 3% of current national spend is put into this area because it is rare, but we have heard in your Lordships’ Chamber today that these cancers are far from rare. We have to look beyond seeing it as a market to see how we can truly help people. I would like to see a minimum annual research target being set for rare childhood cancers, and progress being published.

I strongly support this Bill, especially the creation of a national speciality lead, and I hope we can do that at pace. The impact of the Bill will be felt by so many, not just those with a cancer diagnosis but their families as well. We have heard that a number of organisations support the Bill. Cancer Research UK and others have highlighted how many fewer treatment options there are for those with rare cancers. Also, brain cancer patients have been in touch with me to say that they need far more support. This week Ceri and Frances Menai-Davis hosted an event in Parliament, and they now campaign under the banner Parents Deserve Better. Yes, they do, and this Bill will help with that.