On 29 February, we stood outside Westminster alongside 34 members of the brain tumour community to launch our campaign calling for a National Brain Tumour Strategy.
Why 34? Because on average, 34 people are diagnosed with a brain tumour every day in the UK*.
That’s 34 people who are set onto a care pathway that we know isn’t good enough.
That’s 34 families every day who are also left reeling from the impact of a loved one’s brain tumour diagnosis.
Those 34 included our High Profile Supporter Nicki Chapman, our volunteers Andy Tudor, Rhudi Kennedy and Imelda Turnock as well as Ali Travis, Matthew White, Camilla Hawkins, Simon Cromack and Mel Kelly who are all having or have had treatment for a brain tumour.
Representatives from Our Brain Bank and from charities set up in memory of children who have lost their lives to the disease – our Family-Led Partnerships – also braved the rain.
Here’s what some of them had to say about the tough decisions they’ve had to make and why, in comparison, a National Brain Tumour Strategy is a no brainer:
Despite the weather, the feedback we’ve received is that while no one wanted to be part of this ‘club’ they enjoyed meeting up and uniting in a bid to drive positive change:
“It was a really powerful day and, as ever, you all offered so much wonderful support. Thank YOU!”
“We all stood strong in the rain! Congratulations to you and the team for putting the event together on such an impactful date, and for making us all feel valued. As a community, we were seen and we will be heard.”
“It was such a positive, uplifting experience in terms of how much I value being part of this Charity. I felt privileged to be invited to join as one of the 34. It was also brilliant to see so many people again and meet lots that I’ve only talked to online.”
Why we need a National Brain Tumour Strategy
For years, people diagnosed with a brain tumour have fallen through the cracks. Our Improving Brain Tumour Care Surveys tell us that some people take months to receive a diagnosis, don’t have access to support, undergo harsh treatments that have not improved in decades, and don’t have opportunities to participate in clinical trials.
It’s a no brainer that this needs to change.
Brain tumours have often fallen into the ‘too difficult’ pile in health policy because of the nature of the disease – there are over 120 different types of brain and central nervous system tumours; there are high grade and low grade tumours; and there’s a basic biological challenge in treating the disease.
Consequently, existing policies and cancer programmes are not sufficiently addressing the unique challenges faced by people with a brain tumour and their families.
We believe that the only way to tackle the broad range of challenges faced by the brain tumour community is for the Government to implement a National Brain Tumour Strategy.
What would a National Brain Tumour Strategy offer?
We want to see dedicated action across the whole care pathway for brain tumours: diagnosis, treatment, aftercare and research.
The Government needs to commit to:
- The development of a new optimal diagnostic pathway across all four devolved nations, ensuring everyone receives a fast diagnosis of a brain tumour.
- Every brain tumour patient and their family having good access to wraparound support, meeting all of their collective needs.
- Every brain tumour patient being offered the chance to participate in clinical trials.
- Research into brain tumours recognised as a clinical priority alongside a strategic plan for adequately resourcing and funding for discovery, translational and clinical research.
Sign our open letter today!
A strategy that improves diagnosis, treatment, care, and research? We think having one is a No Brainer.
If you agree, you can help us convince the Government by signing our open letter.
We are going to submit our open letter at the end of Brain Tumour Awareness Month this March.
There should be no more waiting for change. So, please sign it and share it today!
*Source: The Brain Tumour Charity ‘Brain tumour statistics 2020’ report, Page 23 (2020). Prevalence has been estimated based on published survival rates and incidence from cancer registry data for England, Northern Ireland, Wales and Scotland 2020. All UK Brain and CNS tumours – accessed June 2023
This post was a collaboration between Clair Thorstensen-Woll and Jo Porter.