Improving Life Today

We provide information and support to help every person to navigate the system and improve their quality of life.

Over the past five years, we have:

Commissioned ‘Life with a brain tumour’ research in 2015 to find out what life is really like for adults affected by a brain tumour diagnosis. This was the most comprehensive study of its kind globally and the results were compelling (see ‘Losing Myself’)

Extended this research which led to ‘The Price You Pay’, ‘Losing My Place’ and ‘Finding Myself in Your Hands’.

We have used this research to develop and prioritise our information and support services and partnerships

Key findings:

  • 1 in 2 do not have access to good information on symptom management
  • 7 in 10 need more support to help manage their symptoms
  • 9 in 10 have emotional or mental health issues
  • 2 in 3 have seen a negative impact on relationships with their partner
  • 1 in 2 have memory problems
  • 1 in 2 experience financial difficulty

We set ambitious targets

At least 60% of people newly diagnosed with a brain tumour each year are engaged with us by 2020

More than 90% of beneficiaries say we make a meaningful difference to their life

How did we do?

people supported in 2019/20, through direct support (e.g. events, live-chat or phone calls) or peer-to-peer support (e.g. meet-ups or closed social media groups)

People accessing our website support grew over five-fold from 224,000 visits in 2015/16 to 1.15m in 2019/20

people reached within four weeks of diagnosis in 2019/20 (target 6,600)

of people, on average, find what they need from our support services

clinically reviewed factsheets have been downloaded since 2015

Patient Guide distributed to over 11,500 people, both digitally and in print, so people understand more about their tumour type and the care they should expect

Our benefits clinic has resulted in £1.8m extra income for people affected to date (approximately £2.2k per person over 2019/20)

Empowering people to seek the care they deserve


Katie didn’t feel ready to start seeking support until over a year after her diagnosis

Young Ambassadors

Our two-year Young Ambassador programme is for young adults aged 18-25 affected by a brain tumour (either personally or via a family member)

Continue to develop our digital and collaborative services so we can reach and empower more people with more tailored support and information

Reach more newly diagnosed individuals, which remains challenging but is vitally important

Develop a way of measuring health-related quality of life in our community via the BRIAN app and integrate BRIAN with our other online tools

United in our Battle