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Making Progress on all fronts: an update on our strategy

Now, with only one year to go, we‘re looking back at some of the outstanding things you’ve helped us achieve since 2015. And we’re looking forward, to our plans to push for more progress in the next 12 months.

Our strategy

While survival rates have doubled across all cancers, they’ve improved little for brain tumours in over 40 years and are among the poorest of all cancers. Brain tumours can also reduce quality of life, impacting not just physical but mental and emotional wellbeing.

This led us to our two strategic goals, to:

  • double survival - we want to halve the average years of life lost to a brain tumour in the UK from 20.1 to 10 years by 2025
  • halve the harm that brain tumours have on quality of life by 2020, from a baseline measure agreed with clinicians and patient groups at the end of 2015.

2015–2019: Accelerating change for everyone affected

The last four years of our strategy have seen us take bolder steps to accelerate change and reach an even wider community. And it’s thanks to you, our supporters, that we’ve been able to do this.

Here are just a few of the ways we’ve moved forward on all three fronts – research, awareness and support – since the launch of our strategy in 2015.

Research

We’re proud to have committed over £32 million to groundbreaking research over the course of our strategy so far, taking our total committed to date to more than £52 million. In the last four years, we’ve:

  • invested £2.8 million into the Tessa Jowell BRAIN-MATRIX clinical trial, with the first patients due to be enrolled this year
  • made leaps and bounds designing BRIAN (Brain tumouR Information and Analysis Network), our brain tumour databank which will allow patients to make better-informed decisions about their treatment and care, as well as accelerate research into a cure
  • committed to paying for all children diagnosed with medulloblastoma to receive biomarker testing, giving them a more accurate diagnosis - the first time this testing will be routine for those diagnosed with a brain tumour in the UK.

Awareness

We’ve campaigned for urgent change and raised awareness of brain tumours and their impact throughout our strategy. Since 2015, we’ve:

  • successfully campaigned, alongside the late Baroness Tessa Jowell and neurosurgeons Stephen Price, Colin Watts and Pablo Goetz, for the roll-out of 5-ALA (the ‘pink drink’), which is now available across England and Wales
  • launched our Patient Guide to inform and empower patients when discussing their treatment and care, resulting in significant improvements to the basic standard of care patients receive
  • continued to raise awareness of the symptoms of brain tumours in babies, children and teenagers with our HeadSmart campaign, which won the National Lottery’s Best Health Project Award in 2017.

Support

A brain tumour diagnosis is devastating, whether it’s you or a loved one who receives it. We want to support everyone affected at every step, and have made promising progress in this area over the course of our strategy so far:

  • Last year, we reached double the number of people recently diagnosed compared to the year before.
  • We recruited and funded three clinical nurse specialists for people with a low grade brain tumour.
  • We launched our benefits clinic, which has saved each person we’ve helped nearly £5,000 on average.

2019–2020: Our future plans

But we know there’s still much more to do. That’s why we’re committed to moving further, faster during the final 12 months of our strategy to accelerate progress.

Here are some of the key plans we have for the upcoming year:

  • We were thrilled to surpass our five-year target of committing £20 million to research by 2020 two years early. But we’re not stopping there – we aim to commit a further £12.5 million by the end of the 2019–20 financial year.
  • We’ve made great progress on our brain tumour databank, BRIAN, and will be ready to launch it later this year. Following our successful applications to NHS Digital and Public Health England for data, we’re now working on BRIAN’s database and patient portal.
  • We’ll be hard at work over the next year planning our new research strategy, in which we’ll involve our community. It will kick off from 2020 and will enable us to continue funding the best research.
  • We’re proud to have supported over 25,000 people affected by brain tumours through our Support and Information Service to date. But we want to reach even more, including those newly diagnosed. We’ll be updating our services so we can further our impact and meet their needs.

With your generous help and support, we’ve achieved so much since 2015 – so thank you. We’re dedicated to driving even more change over the next 12 months as we continue to pursue our goals of doubling survival and halving the harm caused by brain tumours.

About the author

I’ve worked for The Charity for over six years, and volunteered before that, after my son Alec died of a brain tumour. I help to share and drive forward The Charity’s strategy, working with internal teams and representing The Charity externally. I help develop more detailed plans, get new ideas off the ground and check and report on our progress.

Media contacts at The Brain Tumour Charity

Press office contact details:

Phone: Mon-Fri, 9am-5pm: 01252 237864
Out of hours media contact: 07990 828385
Email: pressoffice@thebraintumourcharity.org