Every year, Members of Parliament (MPs) have a unique opportunity to introduce their own personal piece of legislation through a process known as a Private Members' Bill (PMB). These bills, proposed by backbench MPs rather than the Government, can bring about significant change if they gain enough parliamentary support.
The ballot takes place at the start of each parliamentary session, randomly selecting 20 MPs who are then given priority in presenting their proposed bills. Of these 20, only the top seven are read first on a particular day, and have a realistic chance of passing. Those lucky enough to be drawn must decide on an issue they wish to champion, often influenced by their own or their constituents' experience. One recent example is the ongoing debate around assisted dying, where MPs have used PMBs to push for legislative change, keeping the issue firmly on the political agenda.
Shaping the Rare Cancers Bill
When Scott Arthur MP (pictured above) was drawn in the ballot, he had a number of potential issues to consider. Following positive conversations with the Chair of the All-Party Parliamentary Group (APPG) on Brain Tumours, Dame Siobhain McDonagh MP, Scott decided to focus on an area close to his heart – improving research and treatment pathways for people affected by brain tumours. Having lost his father-in-law to a brain tumour, Scott understands first-hand the devastating impact of this disease and the urgent need for reform.
As this bill broadened to include the wider rare cancer research area, Brain Tumour Research has played a key role in supporting Scott in the development of his bill. Working alongside colleagues from the rare cancer community, we organised and attended roundtables to discuss the critical gaps in research, treatment, and patient support. These discussions helped shape the Rare Cancers Bill into a proposal that could drive tangible change for patients across the UK.
What the Rare Cancers Bill will do
If passed, the Rare Cancers Bill will introduce three key measures:
1. Appoint a named responsible lead for the delivery of rare cancer research, providing greater accountability, facilitating collaboration and long-term coordination for the UK’s research landscape.
2. Commit the Government to review the UK’s Orphan Drug Regulations, examining what can be done to improve the regulations to support the development of treatments for rare and less common cancer treatments.
3. Ensure patient data from cancer registries across the UK is shared with the ‘Be Part of Research’ Registry with a new tailored service for rare cancers, collating all UK patient data in a single, accessible registry. This will enable more clinical trials to take place in the UK – leading to real outcomes for patients.
Why this bill matters
Opportunities for charities and patient communities to directly influence legislation are rare, but this bill represents a genuine chance to drive meaningful outcomes. By reforming the UK’s approach to clinical trials and appointing a rare cancers lead, it could significantly accelerate the development of new treatments.
The 2023 APPG Report highlighted that pharmaceutical companies are choosing not to invest in the UK due to a lack of incentives, harming drug development. Patients will benefit from a more coordinated research landscape, improved access to clinical trials, and a clearer route for holding decision-makers accountable.
The introduction of this bill is a testament to the power of collaboration between MPs, charities, and patient advocates. With Scott Arthur MP leading the charge, we have the opportunity to ensure that people affected by rare cancers receive the attention, research, and treatments they desperately need.
Increasing the participation of adult and paediatric brain tumour patients in clinical trials has been a key focus of our campaigning, and this bill directly supports that goal. It was one of the six key commitments at our 2024 manifesto launch, underscoring the urgency of improving research access for those facing this devastating disease.
Central to our efforts has been the need for a 'champion' – a named position responsible for coordinating efforts across government departments – to ensure that progress is not lost in bureaucracy and that policy changes translate into real-world impact.
Now is the time to turn support into action and ensure this vital legislation becomes law. For the Bill to move forward, we need at least 100 MPs in the chamber voting ‘aye’ – and that’s where you come in. Every MP counts, and your voice can make the difference. Please take a moment to write to your MP using this quick and easy template.
The more MPs we get on board, the closer we come to real change for those affected by brain tumours.
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Published Thursday 13th February 2025.