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
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
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)
Katie didn’t feel ready to start seeking support until over a year after her diagnosis
Katie, aged 30, who is living with a low grade meningioma
“I have benefited a lot from the support offered by The Charity. I didn’t feel ready to start seeking support until over a year after my craniotomy and that is when I joined the Facebook group, which was exactly what I needed. I just wanted to hear from others who understood and to be part of a community who are there for each other.
I have found the one to one support particularly helpful as we talk about not just my brain tumour but other aspects of my life which are just as important. You have really helped me deal with some of the trauma I was left with after my treatment and highlighted the importance of everyone receiving the same high level of care. I am seeking better treatment now as I am entitled to that along with everyone else who has a brain tumour.
The Charity has definitely had a positive impact on my life in the last year and a half.”
Katie joined the Young Adults Facebook support group in July 2018 and has attended many events since, including virtual meet-ups since COVID-19.
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)
Driven by their often devastating personal experience, our Young Ambassadors are a courageous and exuberant group of young people, passionate about improving the future for those affected by brain tumours. They use their experiences of this devastating disease to make a difference, by having the courage to share their compelling and often deeply personal stories.
They have had a significant impact within and beyond The Charity through their passion and commitment, offering hope and support to ensure others feel less alone, face-to-face and online, including via social media, blogs, vlogs, in the press, attending local young adult meet ups and supporting Charity family days.
One Young Ambassador, Yasmin, shared her story in her local newspaper to support others:
“I’m really proud of the work of the Young Ambassador programme, showing that you can do things, you can get back on your feet after a brain tumour. I want to make sure people realise they’re not alone.”
Become a Young Ambassador
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