Rare Cancers Bill

Lord O'Shaughnessy Excerpts

Friday 16th January 2026 Lords Chamber

[Lord O'Shaughnessy (Con)]

My Lords, before beginning my speech, I draw attention to my entry in the register of interests, particularly my involvement with Cambridge University Health Partners, Newmarket Strategy and Health Data Research UK, and in particular as a patron and adviser of the Tessa Jowell Brain Cancer Mission, of which more shortly. I congratulate the noble Baroness, Lady Elliott, on bringing this Bill to this House, and Scott Arthur on introducing it in the other place.

This House has an excellent and long-standing record of promoting innovation in care and research in cancer. The noble Baroness has already talked about and referenced the campaigning of our sadly departed friend Baroness McDonagh; we can think back even further to the Medical Innovation Bill, introduced by the noble Lord, Lord Saatchi, under not dissimilar circumstances.

Today, I pay tribute to, and encourage us to learn from, the example of another dear and sadly departed friend of this House: Baroness Jowell, or Tessa, as everyone knew her. Eight years ago this month, and only months before her own untimely death from glioblastoma—unfortunately, a not so rare cancer—Tessa inspired this House and this country to do more. She wanted us to give the word that both my noble friend Lady Coffey and the noble Lord, Lord Patel, have already mentioned, which is hope—hope to patients and hope to their families. When she finished, it was an extremely emotional event. Those who were there will remember it. The House rose and rightly applauded, in itself a highly unusual response, but one that was absolutely deserved.

It was my privilege to respond on behalf of the Government that day. We were able to make a number of commitments to move forward—of course, in a very typical way, Tessa was talking not just about her cancer but all cancers. Immediately afterwards, therefore, we brought together all the parties in the brain cancer space—charities, NHS England, the NIHR and others—and the Brain Cancer Mission was born, in her name and in tribute to her. Whether or not those are rare cancers—GBM is sadly quite common, while others, such as medulloblastoma, are incredibly rare—they all suffer from the same kinds of problems when it comes to treatment and research.

The aims of the Brain Cancer Mission are to improve the quality and equity of care, to strengthen workforces, and to accelerate research, development and innovation. I am delighted to say that, thanks to the leadership of so many people—the charities that have been involved, the team and others—it is doing, and has done, amazing things. It has supported 32 hospitals to improve the quality of care, 14 centres of excellence in neuro-oncology for adults and 11 for children, a fellows programme that is supporting hundreds of researchers, an academy that has trained over 1,500 neuro-oncology staff of all kinds, and the largest dataset for neuro-oncology ever established. In conjunction with the charity Brain Tumour Research, it has created a novel therapeutic accelerator.

Sadly, though, there is so much more to do. Brain cancer is the biggest cancer cause of death for children, and indeed for adults under 40. Take GBM, for example: late diagnosis, a 12 to 18-month prognosis, and only 5% of people surviving more than five years. Those statistics are repeated over and over for all brain tumours and for all rare cancers, and the standard treatments have been unchanged for decades. That is why this Bill is so important.

I want to speak quickly to the Bill’s three clauses. The first deals with marketing authorisations, which the noble Lord, Lord Patel, has already mentioned. The MHRA has made some progress through what it calls its international recognition procedure, but we need to go further and faster. I look forward to hearing from the Minister about what is happening to make sure we can accelerate those innovative treatments through to patients.

Clause 2 talks about a duty to support research. Eight years ago, at the government Dispatch Box, I made a promise that we would spend £40 million of NIHR money on brain tumour research, but we have not yet. The NIHR has been a willing partner, but we are not yet supporting that research to the degree we should. Again, I look forward to hearing from the Minister how that commitment will be met—and well beyond, and for other cancers, too.

Finally, Clause 3 deals with data. The noble Lord, Lord Freyberg, introduced a debate on this subject some years ago—in itself, it is a whole other subject that we could talk about. However, I strongly commend the clause, as it reflects the recommendations that were made in my own review of clinical trials. We need to go further—patients would be amazed to find out that their data is not being used to find trials for them. That is where the public is, and the law needs to catch up.

I end by again thanking the noble Baroness, Lady Elliott, for introducing the Bill, and reminding the House that Tessa invited us to approach the fight against cancer not with fear but with courage and compassion. That is what this Bill exemplifies.

[Lord Blunkett (Lab)]

My Lords, may I take one minute of the House’s time? I commend what was just said by the noble Lord, whom I was pleased to work with many years ago, when he was the Minister. I am very pleased that he recalled the last contribution that my long-standing friend, Baroness Tessa Jowell, made in this House. I had the privilege of being the speaker immediately after her, which was one of the most difficult occasions of my life—