With Parliament back from summer recess, we’re already making sure the needs and priorities of the brain tumour community are front and centre. From celebrating progress in Westminster, to standing alongside campaigners and building new policy projects, it’s been a busy and important start to the new term.
Rare Cancers Bill: major step forward, thanks to your campaigning
We were pleased to see the Rare Cancers Bill pass its Third Reading in the House of Commons a few months ago. This was thanks in no small part to the campaigning work of our brain tumour community—every email, call or message to your MP helped make that happen.
This week, we met with Baroness Julie Elliott, who is sponsoring the Bill through the House of Lords, to discuss the next stages as the Bill moves into the Lords for its Second Reading on 14 November.
The Bill, led by Dr Scott Arthur MP, offers significant change for patients with rare and less survivable cancers, including brain tumours. Key features of the Bill include:
- A duty on Government to support and promote research into rare cancers.
- Improved access to clinical trials, with better ways to contact patients through cancer registries.
- A review of orphan medicinal product regulations to ensure licensing and regulatory barriers are addressed.
A huge thanks to all of you who contacted MPs, or otherwise supported this campaign. Your actions are already helping to turn momentum into genuine change.
Standing with our friends at Brain Cancer Justice
We empathise with all those who feel despair and frustration at the slow pace of progress being made in elevating this uniquely complex and challenging disease to a place where it is prioritised by policy makers.
Dr Michele Afif, Chief Executive Officer, The Brain Tumour Charity
Earlier this month, a new campaign group – Brain Cancer Justice – launched by gathering in Parliament Square and handing a petition to No. 10 Downing Street. Representatives from The Brain Tumour Charity attended to stand with all those grieving a loved one or living with the lack of treatment options or long-term effects of a brain tumour.
Their petition calls on Government to increase investment and improve outcomes for those affected by brain cancer. You can read and sign it here.
Our Chief Executive, Dr Michele Afif, said: “We empathise with all those who feel despair and frustration at the slow pace of progress being made in elevating this uniquely complex and challenging disease to a place where it is prioritised by policy makers.
It’s complex because there are around 120 different types of brain tumours and not all of them fall neatly into a National Cancer Plan. It’s challenging because it involves the brain – and because diagnosis and access to the best possible care uniformly is tied in with all the pressures of running a National Health Service.
That’s why for the past 18 months we’ve been calling for a National Brain Tumour Strategy. There has been progress – just one example is that the Rare Cancers Bill is progressing through Parliament – but we remain tireless in our efforts to effect systemic change.”
Enabling innovation in brain tumour treatment: Parliamentary roundtable
Progress in brain tumour treatment has been far too slow, for far too long. Clinical trial recruitment remains low, access to new therapies is inconsistent, and patients continue to face delays to diagnosis and treatment. To change this, we need to understand and overcome the barriers holding back innovation. That’s why we have launched a new policy project to identify what’s preventing progress, and to develop solutions that can make a real difference.
Earlier this month, we hosted a parliamentary roundtable as part of this project, kindly chaired by Sarah Edwards MP. We were joined by representatives from the life sciences industry, alongside powerful contributions from our patient representatives Owen Sutton and Hannah Lemanski.
Sarah Edwards MP said:“It’s vital that we not only identify the challenges in brain tumour care but also focus on how we can overcome them. Hearing directly from both patients and experts was invaluable in shaping that conversation.”
Owen said:“Being in a room full of people dedicated to helping others like me, truly made me feel seen and heard by the wider community.”
Hannah added:“Bureaucracy should not stand as another barrier for us to face. I hope that constructive steps are being made to change the way we get access to innovation.”
In the coming weeks, we’ll launch a community survey to gather more experiences and insights. Together with the evidence we’ve already collected, this will feed into a major report next year setting out key recommendations to empower innovation and drive change in how new treatments and technologies reach patients.
Update: National Brain Tumour Research Consortium
We’re pleased to share progress on the NIHR-funded National Brain Tumour Research Consortium, which has submitted a major funding application to deliver more late-stage clinical trials and expand UK research into brain tumour. Between £20–25 million of the £40 million pledged by Government in 2018 is expected to be allocated, with a decision expected in early November.
This is an important step forward, but we know that pledges must translate into action. We will continue to lobby Government to ensure this commitment is realised in full, and that patients see new treatment options sooner.
Upcoming policy and campaign priorities
Momentum is building. With Parliament back, we’ll be meeting MPs and making the case for a National Brain Tumour Strategy — not just in Westminster, but across the upcoming party conferences too.
In November, we will publish a landmark financial impact report that will set out the true economic cost of a brain tumour for families, public services and the wider economy. By combining economic analysis with lived experience, this work will give us a powerful platform to demand better wrap-around care, faster diagnosis, fairer access to trials and greater investment in research.
We will also hold a campaigning event to launch the report, creating a key moment for the brain tumour community to come together and press for progress. Thank you to everyone who has already shared their experiences to shape this vital work. Watch this space!