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Campaigning for a National Brain Tumour Strategy across three of the devolved nations

This Brain Tumour Awareness Month we held three events in the parliaments of Scotland, Wales and Westminster. Highlighting our new It’s a No Brainer campaign and enabling volunteers to share their experiences with policymakers.

This year, ahead of BTAM we launched our new campaign, It’s a No Brainer, calling for a National Brain Tumour Strategy (NBTS). Following the launch, we held drop-in events in Westminster, the Scottish Parliament and for the first time, the Welsh Parliament, or the Senedd!

The purpose of the drop-ins this year was to share with politicians why we believe a National Brain Tumour Strategy is the right thing to do. It also provided a chance for some of our amazing volunteers to share their experiences with policymakers and the changes they would like to see.

Ahead of our event in Scotland, we were delighted to have a motion submitted by Foysol Choudhury MSP highlighting the unmet needs of the brain tumour community. The motion got 19 signatures from MSPs of all different political parties which was an excellent start to BTAM!

After the events, we spoke with the volunteers who attended and asked them to share a few words about what attending the event meant to them.

Advocating for the brain tumour community

Over 45 politicians attended our events in the three parliaments. It was great to hear that our volunteers enjoyed the experience.

Molly, one of our volunteers in Wales shared “The BTAM Senedd drop-in event was a significant day – not only for being the first of its kind in the Welsh Parliament, but also because it marks the beginning of a targeted presence of TBTC in Wales.

Despite the impending leadership changes, we had an excellent turn-out, and many MSs shared how they had been personally affected by brain tumours. As ever, it remains truly shocking how indiscriminate and far-reaching brain tumours really are.”

Heather, who attended our drop-in in Scotland shared “Attending the drop in for BTAM is always a rewarding experience. Offering a chance to meet other people involved with the charity and hear their stories. Most importantly, it also enables us to tell our stories to the MSPs who came along.”

Meanwhile, Sophie, who was one of our volunteers in Westminster said “I was proud to advocate for the brain tumour community and share my experiences with politicians at Westminster. The people I spoke to really listened to me and were supportive of the need for improvement. Systemic change doesn’t happen overnight but each time we show up and speak up, I believe we get one step closer.

Emphasising the need for change

Gemma, who is a part of our supporter group, Unite to Fight Brain Tumours, volunteered at our event in Scotland. Afterwards, she compared the progress that has been made for other disease areas. She shared “We need to see change. If somebody goes to the doctor and they think it’s a stroke, there’s a pathway they can check. What we need is a pathway for early diagnoses of brain tumours.

Dr Victoria McBride and her nephew, Scott attended our drop-in in Edinburgh. Following the event Victoria noted that “Since my family member’s diagnosis of glioblastoma multiforme in 2021, I have become acutely aware of the work needed to be done for people with brain tumours and their families.

“I attended the event to raise MSPs awareness of the It’s a No Brainer campaign and to explain why change is needed. I hope that by doing so, MSPs will understand the need for quicker diagnosis, improved research and better treatments.”

We completely agree with Victoria!

It’s a No Brainer

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. We need all four devolved nations to commit to this which is why it is so important that we highlight our call in the separate parliaments.

Sign our open letter today!

March is Brain Tumour Awareness Month, and we need your support to drive change. Please sign our open letter calling for a National Brain Tumour Strategy.