Rare Cancers Bill

Lord Freyberg Excerpts

Friday 16th January 2026 Lords Chamber

[Lord Freyberg (CB)]

My Lords, this Bill touches a matter close to my heart, on which I have worked, on and off, for over a decade since my sister, Annabel, fell ill with mesothelioma in 2012 and her daughter, my niece, Blossom, died of neuroblastoma a few years earlier.

While survival in common cancers has improved over time, progress has been limited in less common cancers, as we have heard, and almost negligible in rare cancers, reflecting the limited research funding available for these awful diseases. As a result, this Bill has my full support, and I thank both sponsors for taking it through both Houses.

It being an enabling Bill, I thought it would be most useful to share lessons learnt over that time, including the risks that policymakers must navigate in its delivery, the possible role of new technology, and our return to Horizon Europe to accelerate the delivery of benefits to patients with rare cancer from any new funding.

First, these cancers and other neglected diseases such as chronic fatigue syndrome and long Covid face a structural Catch-22. With no historic research funding, they have limited research capability. When their few brave clinicians try to secure funding, they compete against academics in well-funded areas with resulting strong citation track records. As a result, they cannot compete and fail to get funding, perpetuating the cycle. UKRI is loath to create disease-dedicated funding streams in case scientific quality falls and “citations per R&D pound invested” drops. A solution to this Catch-22 must be found. Perhaps UKRI could bundle all these neglected diseases together, which would maintain competition and so scientific quality, but on a much fairer basis. I would urge Ministers to direct research funders to explore the merits of such a scheme.

Secondly, the fastest way to save lives is care quality improvement. As the noble Lords, Lord O’Shaughnessy, Lord Kakkar, Lord St John, and others, have rightly drawn attention to, while the UK has great data for such analysis, we fail to put its insights rapidly into the hands of clinicians who can use it. For instance, there are recurring delays in processing pathology reports for the national cancer surgery audits, driven by the need to manually process significant volumes of unstructured data. Norway has automated this process, and this seems mostly a matter of appropriate technology deployment. Perhaps the noble Baroness, Lady Blackwood, in her new role as chair of the Health Data Research Service, could help expedite such a change.

Finally, we all know that the UK’s cancer outcomes lag those of our European peers. I would like to commend to noble Lords the amazing anal cancer programme at Leeds Teaching Hospitals called atomCAT. Using privacy conservation technology, they have developed a way for an international consortium of hospitals to rapidly compare clinical practice. That provides direct exposure for UK clinicians to learnings in better-performing peer countries so accelerating UK cancer care improvement.

Careful design of the planned investments in health data can allow such safe digital comparison not only between our four great nations but with our European peers, which is essential, scientifically, in these cancers given their rarity. Now that we are back in Horizon, such investment would also position our digital researchers to compete for and secure European funding. I wish this Bill a speedy passage.