Every year in Wales, more than 700 people are diagnosed with a brain tumour. For too long they’ve been let down by a system not built for them and it’s time to demand solutions.
It’s clear that improvements are needed across the entire pathway – from speeding up diagnosis times to making sure the right support is available after treatment – and the only way to tackle these problems holistically is through a comprehensive National Brain Tumour Strategy.
Will you contact your MSs today to tell them about the challenges faced by the brain tumour community and invite them to meet with us to discuss challenges across the patient pathway and how they can be overcome?
Four simple steps to demanding action!
1. Fill in your details using the form on this page. This helps us match you with your local MSs.
2. If you feel comfortable, include your personal experiences of being affected by a brain tumour diagnosis and explain why you’re demanding change. This will appear in your email to your MSs.
3. The email will be automatically generated using our template and the details you’ve included – you just need to hit the “Send message now” button to send your email to your local MSs. Don’t forget to let us know when you receive a reply!
4. Share this campaign with as many people so we're able to connect with as many MSs as possible and show them it's an issue that's important to lots of their constituents.
Why are we demanding change?
For too long, people with brain tumours have been falling through the cracks.
Too often, people experiencing symptoms that may indicate a brain tumour visit their GP multiple times before being referred for diagnosis, with many initially misdiagnosed. Others are only diagnosed following an emergency admission to hospital. These delays can have devastating consequences for treatment options and outcomes.
People also face challenges after diagnosis. The most recent Wales Cancer Patient Experience Survey found that people with a brain or central nervous system tumour scored significantly lower for their overall rating of care, and only 5% were given enough care and help from their GP after leaving hospital, far below the average of 31% for all other cancers, suggesting that many are not receiving the coordinated support they need.
Alongside these challenges in care and support, progress in improving outcomes remains far too slow. Despite brain tumours reducing life expectancy by an average of 27 years, they continue to receive a disproportionately small share of cancer research funding. This chronic underinvestment has contributed to a lack of progress in developing new treatments, with patients relying on therapies that have not changed in decades. Limited and inconsistent access to clinical trials further restricts opportunities for progress, and leaves many families with few options when standard treatments fail.
It is clear that improvements are needed across the entire patient pathway. The most effective way to address these challenges is through a comprehensive National Brain Tumour Strategy for Wales, providing clear leadership, accountability and commitments to improve diagnosis, treatment, care, support and research.