Let Government know that improving brain tumour care is a No Brainer!
Waiting is no longer an option! Sign our open letter and let Government know it's time for a National Brain Tumour Strategy. It's a clear path to saving lives and reducing suffering – and that’s a No Brainer!
Sign our open letter to the Minister for Health and Secondary Care
Dear Rt Hon. Andrew Stephenson MP,
(CC: Neil Gray MSP, Eluned Morgan MS, Robin Swann MLA)
We are writing to you on behalf of the 34 people diagnosed with a brain tumour every single day, and the 88,000 people living with this disease across the UK, to call for a National Brain Tumour Strategy.
A National Brain Tumour Strategy would help to address the challenges at every stage of the brain tumour pathway including diagnosis, care, treatment and research.
For brain tumour patients, it simply takes too long to be diagnosed. Moreover, once diagnosed, according to our Improving Brain Tumour Care survey results, in some areas of the country, people do not receive the care they should expect, including access to a Clinical Nurse Specialist. Their treatment options are also limited and have not changed in decades.
Brain tumours are a particularly complex disease; there are 120 different types of brain and central nervous system tumours, and they can be low grade or high grade. There are differences in how brain tumours start, develop and are tracked compared to other cancers that mean that they are often missed by NHS cancer programmes.
By generally placing brain tumours within the cancer space, we neglect nearly half (49%) of the brain tumour population. Low grade tumours, which are not classified as cancerous, are also devastating and the treatment and care for patients with these, and subsequent long-lasting impacts, can be life-altering.
The only way these challenges can be tackled is on a strategic, national level, which is why we are calling upon all four devolved nations to work together on a National Brain Tumour Strategy and national implementation plans.
We have copied in all the devolved health ministers as we know that this needs to be actioned across all four nations of the UK. We would like to collaborate with you, and others, to develop a cohesive strategy for the whole country.
We want to see:
- The development of a new optimal diagnostic pathway across all four devolved nations, ensuring everyone receives a fast and efficient 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.
Brain tumours cannot remain the forgotten disease and you have the power to change this.
Thank you for your time and we look forward to hearing from you about how you plan to tackle brain tumours.
Cameron Miller
Director of Policy and Strategy, The Brain Tumour Charity