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Getting radical with the brain tumour community!

We recently held our “What if…?” workshops as part of the development our our new organisational strategy – Beyond Brain Tumours.

In July, we bought together a diverse range of people from across the brain tumour community. Our aim was to generate radical solutions to the biggest challenges we need to overcome before we can defeat brain tumours. 

From leading researchers and dedicated healthcare professionals to people personally affected by a brain tumour and representatives from other charities who share our goals, we came together to ponder the question, “What if…?”

What if we succeeded in our mission to double survival and halve the harm done by brain tumours? How would the world look and what would we have needed to change to get there?

It was a great day, felt really rewarding to be involved and speak to so many other people and to meet the charity staff I hadn’t had a chance to yet.

Why do we need to get radical?

Despite making huge steps forward in the last 25 years, the fact is that progress is simply happening too slowly. And when you or a loved one is diagnosed with a brain tumour a cure just can’t wait!

If we truly want to move further, faster towards a world where brain tumours are defeated, we need to think bigger, be bolder and develop more radical solutions to the issues faced by the brain tumour community.

And we’ve already started this by making the decision to invite anybody affected by a brain tumour to join in with the co-creation of our new strategy, Beyond Brain Tumours.

This approach is a natural evolution of The Charity’s focus on individuals affected by a brain tumour, their needs and how we can achieve more when we join together. But it feels more like a revolution.

Involvement at the charity is ‘front & centre’ all thoughts and views matter however small and listened to and considered. I feel privileged to be able to contribute to The Charity.

Over the past year, we’ve brought together over 1,000 people from the brain tumour community to map the landscape we operate in. This has led to the development of a list of five key issues that we need to change:

  1. Research into brain tumours is under-funded despite the severe impact they have on quality of life and life expectancy
  2. Research that generates new knowledge about brain tumours isn’t being translated into kinder, more effective treatments.
  3. There are significant differences in treatment and care when 70% of people diagnosed with a brain tumour are left with an unmet need – whether that’s physical, emotional or financial.
  4. The community wants to see more collaboration between charities that want to see brain tumours defeated!
  5. Health data isn’t being used to its full potential for improving outcomes for those affected by a brain tumour.

By hosting our “What if…?” workshop we wanted to strengthen the connections we’ve been forging during the co-creation process. We also wanted to get everybody thinking radically about how we solve these issues.

It really was a fantastic day, truly inspiring to have so many people working towards the same mission in one room. I loved meeting some of the involvement champions and the team at The Brain Tumour Charity.

What did we learn by getting radical?

There were two main themes that came out of our “What if…?” workshop:

  • Patient to person

Transforming the pathway because we’re equal partners and are all trying to get the best care for individuals. We want everyone affected by a brain tumour to feel empowered to take control and know what to expect.

  • Collaborative network

Together we can do anything and we need to ramp up how we collaborate to solve these global issues.

I can genuinely say it was one of the best days of my life.

Thank you to all our radical changemakers!

Our “What if…?” workshop brought out some amazing ideas. We hope new friendships were forged and existing relationships were strengthened.

We want to say a huge thank you to everyone who came along for their hard work, positive vibes and radical ideas throughout the day – whether you’re personally affected by a brain tumour or professionally committed to our cause.

Thank you also to those who joined us from our Involvement Network, including our Young Ambassadors and Involvement Champions. Your passion and energy really helps to drive us forward and keep us on track.

A huge thank you to everyone from brainstrust, Brain Tumour Research, Brain Tumour Support, OSCAR’s Paediatric Brain Tumour Charity and Black in Cancer. We can achieve more when we work together and we remain united in our aim of defeating brain tumours.

An inspirational event – great to see cross-sector charities pulling together.

Finally, we want to give special thanks to our keynote speaker Dave Bolton, Founder of the Ahead of the Game Foundation, Quirk Solutions, the facilitation team who helped support the design and delivery of the event and everybody at The Business Design Centre in London for making us at home.

What next?

We’re continuing on our co-creation journey by taking everything we’ve learned so far and fleshing it out into a full strategy.

We can’t do this alone though, so if you’d like to join in and help us co-create our new strategy, you can sign up by visiting thebraintumourcharity.org/beyond-brain-tumours