Baroness Elliott of Whitburn Bay (Lab)

My Lords, it is a great honour to be opening the debate on the Rare Cancers Bill today. I thank Dr Scott Arthur, the Member of Parliament for Edinburgh South West, who, when he drew number six in the Private Members’ Bill ballot in autumn 2024, chose this crucially important subject for his Bill. I also thank him for the energy he has put in to getting the Bill to this point, with the support of his amazing team. When my dear friend, Dame Siobhain McDonagh MP, asked me if I would meet with Scott with a view to taking the Bill through the House of Lords, I of course agreed. That conversation led to me having the privilege of supporting the Bill here today. I want to set out the background to why this Bill is necessary and, in my view, urgently needed. In this Bill, the term “rare cancers” means cancers that affect fewer than one in 2,000 people, according to the UK rare diseases framework. But in many ways, I feel that the term “rare cancers” is misleading, because they represent 47% of all UK cancer diagnoses, which is 180,000 people a year being diagnosed with one of these rare cancers. However, disproportionately, they represent 55% of cancer deaths in the UK every year. While we frequently hear of the many amazing breakthroughs in cancer treatment—and we welcome all of them—that save and extend the lives of many people now living with cancer, in ways that even a decade ago were not possible, those amazing breakthroughs do not apply people diagnosed with one of these rare cancers. In many cases, treatment and survival rates for such cancers have not improved for decades. With so many people dying of these rare cancers every year, something has to be done to improve the situation. The measures in this Bill take the first steps to do that. I want to talk a little today about why I feel this is so important, and why I wanted to help and support taking this Bill through Parliament. I remember as if it were yesterday the day Siobhain told me what her sister Margaret had been diagnosed with, and the bleak prognosis she had been given. Many people in this Chamber will know someone who is affected by one of these rare cancers and will have had that same experience. I want to talk about a couple of things that have crossed my life to do with rare cancers. Twenty years ago, my son went to a new school for sixth form. One of the teachers was the mother of his friend at that school. There were various fundraising events for the charity she had set up for inflammatory breast cancer, which my family supported. Two years later, my twins went to the same school for sixth form. One day, my 17 year-old daughter, Georgia, came to me and said, “I am going to do a skydive to raise money for Mrs. Cummings’ charity”. She needed my permission because she was under 18, but there was no way I could not give it. That was the energy Mrs. Cummings had among her pupils. A few weeks later, I met the incredible woman who was that inspirational teacher: Laney Cummings. I spent two days sitting and chatting with her while waiting for the weather to clear so my daughter to jump out of a plane. I knew why my children and many others thought the world of Mrs. Cummings. I had never heard of inflammatory breast cancer, but after those two days, I knew the symptoms and have been very aware of it ever since. Sadly, only weeks later, Laney died, having been clear of the disease for about eight years. Then, I came to the awful day I learned how gravely ill Siobhain’s dear sister Margaret was: one of those days you never forget. Baroness Margaret McDonagh was a distinguished Member of this House for many years, known to many here today and a friend to many. I had worked with Margaret in the 1990s at the Labour Party. She was a brilliant organiser in a class of her own, and we became friends. If you were lucky enough to have Margaret as your friend, you were very lucky. She was one of the most loyal, kind and sometimes very scary friends you would ever have. A week or so after Margaret fell ill, I was with Siobhain on a parliamentary visit, on a day when Margaret was waiting to have her first surgery. I asked how she was and what could be done. To my horror, Siobhain said she had a glioblastoma tumour. She was having surgery that day, followed by other treatments, but the prognosis was bleak. I could not believe that a strong, driven woman such as Margaret, who only three months before had been at our wedding, dancing the night away, full of energy, had in effect been given a death sentence. Over the next 18 months or so, I watched Margaret fight her cancer with the same determination and energy she always had. Sadly, she did not win this one, and left us two days before her 62nd birthday in June 2023. The consultant she had found, who treated her with some of the things not available on the NHS, was Paul Mulholland, who gave Margaret many more months with us. He is a man many of us got to know in Margaret’s last campaign, being driven with that same grit and determined McDonagh energy by Siobhain, to find a cure for glioblastoma. While the campaign has raised large amount of money, and now his patients are in its first trial, why do we have to raise money to do this in this way? Why are the huge research programmes within our health ecosystem not doing this? That is where the Bill comes in. It is a very short Bill, but it will make a significant difference to what we have now and be a first step in starting to tackle the issues for people facing a diagnosis of one of these rare cancers. Its aim is to improve survival rates and outcomes. Clause 1 on marketing authorisations review requires the Secretary of State to review the regulatory framework for orphan medicinal products relating to cancer. The review must consider international regulatory approaches, and a report must be published and laid before Parliament within three years of Royal Assent. It applies UK-wide. Clause 2, duties of the Secretary of State, which amends Section 1A of the National Health Service Act 2006, explicitly requires promotion and facilitation of research into cancers affecting no more than one in 2,000 people in the UK. It requires arrangements to be in place to enable identification and contact of potential clinical trial participants and creates a statutory role of national specialty lead for rare cancers. That applies in England. Clause 3, information disclosure for research, amends the Health and Social Care Act 2012 to allow NHS England to disclose information where necessary to facilitate clinical trials into rare cancers, explicitly subject to existing data protection legislation and safeguards. It applies in practice to England. The Bill has had cross-party support, government support, and the support of many charities, including the Brain Tumour Charity, Blood Cancer UK, Pancreatic Cancer UK and the Less Survivable Cancers Taskforce, to name a few. It passed through the House of Commons unamended and is a Bill that can genuinely impact many lives in a positive way. I look forward to hearing the many contributions today from noble Lords in this Chamber. I beg to move.