Rare Cancers Bill

Lord Freyberg Excerpts

2nd reading
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.

Terminally Ill Adults (End of Life) Bill

Lord Freyberg Excerpts

2nd reading
Friday 19th September 2025 Lords Chamber

[Lord Freyberg (CB)]

My Lords, over the past two days of debate, we have heard sincere and often moving contributions from every side of the House. The arguments for and against assisted dying touch on the most profound questions of life, death, autonomy and compassion. I have also received a large number of letters and emails from the public, some urging reform and others expressing grave concern. What unites them is the strength of feeling and the urgency of this issue.

The case against change is serious. Many fear that legalising assisted dying would undermine the sanctity of life, send the wrong message to those who feel themselves a burden or erode the doctor-patient relationship. Some point to examples abroad where, over time, laws have been expanded, and ask whether we can ever be certain that similar pressures will not emerge here. Others remind us of the patchy provision of palliative care and argue that real choice does not exist until every dying person can be confident of the very best care at the end of life. These concerns deserve to be heard with respect.

Yet the arguments in favour are no less compelling. For all our advances in medicine, palliative care cannot always relieve suffering. Too many families have watched a loved one endure a prolonged and degrading death, or else travel abroad—often alone—to places such as Switzerland, because the law here forces them into exile. Those who cannot travel sometimes resort to desperate means. In these cases, the current law does not protect the vulnerable; it abandons them.

It is regrettable that no Government have yet established a royal commission to examine this question fully, despite clear and enduring need. For over 20 years, efforts to legislate have drawn on international evidence and proposed careful safeguards, but each has faltered, leaving the cost borne not by us in Parliament but by dying people and their families. That failure of political will should not prevent us addressing the issue now. But alongside reform, we must also act to strengthen existing provision. I therefore hope that the Government will do more to ensure that palliative care is properly and fairly funded, so that nobody feels forced into a choice by a lack of support.

In taking this step, we can draw on the experience of others. We are not without guidance: over 300 million people worldwide now live in jurisdictions where assisted dying is legal for the terminally ill. No country that has taken this cautious route has reversed its law, and the evidence shows that, far from undermining palliative care, such laws often strengthen it.

The Bill seeks to offer choice—not compulsion—under the tightest safeguards ever proposed: multiple medical assessments, an independent multidisciplinary panel and new coercion offences carrying life sentences. It has been scrutinised for hundreds of hours in the Commons, amended repeatedly, and now comes to us for further examination. I therefore welcome and support the initiative of the noble Baroness, Lady Berger, and the noble and learned Lord, Lord Falconer, to establish a Select Committee, so that further evidence can be gathered and considered without delaying the Bill’s progress.

The question before us is not whether dying people should suffer—none of us wishes that—but whether we should give them the right, under strict conditions, to decide for themselves when suffering becomes unbearable. To deny them that choice is to impose our values at the most intimate moment of another’s life. To grant it shows compassion, respect and autonomy, and would protect the vulnerable through law rather than turning a blind eye. That is why, after weighing both sides, I support the Bill.