Current Surveys
Help us understand what's working and what we could do better.
Peer support can provide an important opportunity for people affected by brain tumours to share experiences, exchange information and connect with others who understand the challenges they face.
We'd love to hear about your experiences of peer support, what you've found helpful and whether there are ways support groups could be improved.
Your feedback can help identify what matters most to patients and carers, highlight areas for improvement and inform the development of future support services.
Understanding Values, Benefits & Ways to Improve Our Peer Support Group
Survey Findings & Reports
Listening to patients and carers is an important part of improving care, but sharing what we learn matters too.
Here you'll find findings from previous surveys and research projects, including insights into patient and carer experiences, the challenges they face and opportunities to improve care and support.
The Value of Brain Tumour Peer Support
Patient and caregiver experiences presented at EANO 2026
Research involving patients and caregivers explored the value of peer support for people affected by brain tumours, including the benefits, challenges and opportunities for improvement.
The findings were presented at the European Association of Neuro-Oncology (EANO) Congress in 2026 and highlight the importance of listening to lived experiences when developing support services.
What we've learned from your feedback
Every perspective matters. Whether your experience has been positive, challenging or somewhere in between, your feedback can help us understand what people need and where improvements can be made.
Thank you for taking the time to contribute to better information, research and support for the brain tumour community.
Thank You for Sharing Your Experience
Patients family
Access to a website like this would have been a breath of fresh air during the chaos and confusion that followed my husband’s diagnosis. Having clear, specialist-led information in one place would have helped us better understand what was happening, what options existed and how to navigate decisions with more confidence. At a time when everything felt overwhelming, clarity and compassion in how information was presented would have made a real difference. I’m really glad that this website now exists for others facing a similar situation.
Patients family
Tackling a GBM diagnosis is extraordinarily overwhelming, the stats bulldoze you & researching treatment options online is sole destroying. Having one consolidated place to connect with other patients, understand additional treatment options & potential trials & follow others journeys is incredibly comforting and very much needed. Thank you. It’s a tough journey and we only get through it by all sharing our discoveries to make each others experiences that little bit easier.
Thank you for putting the time aside for this website. Being a caregiver to a 10months in GBM patient I can honestly say that this website will benefit future patients enormously.
Patient
When everything changed, I didn’t want medical jargon or endless links. I just wanted clear, honest information I could actually understand.
Having it all in one place helped. Finding the information together was a huge relief. We could stop Googling and start getting a clearer picture of what was going on.
I could come back when I was ready. Some days I read a lot. Some days I couldn’t read anything at all. Knowing I could come back without pressure really helped.
Knowing more made things feel less chaotic. Understanding my options didn’t fix everything, but it helped things feel a little less out of control.
This was about more than treatment. This affected my whole life - not just my health. Seeing emotional and practical support included made me feel like that was understood. I didn’t feel like I was doing this alone. It felt like someone had already done the hard work of pulling this all together for me - and that meant a lot!
This website is an independent resource, developed by the Horizons in Neuro-Oncology (HINO) team in the UK. Initial development was supported by Dr Matt Williams and Lillie Pakzad-Shahabi, with grant funding from Novocure to support ongoing work.
HINO maintains editorial independence. While the team collaborates with a range of healthcare organisations and receives grant support from Novocure, all content is created and reviewed by the HINO team and reflects their combined clinical expertise, professional experience, and lived experience as patients and caregivers. HINO retains full editorial control over the content of the website and that Novocure’s financial support does not imply any involvement in, or approval of, its editorial content.
While content is based on UK clinical practice, much of the information may be relevant to international readers. It is provided for general guidance and should not replace medical advice from your own healthcare team.
Please use this information to support discussions with your local oncology team, or see our advice on obtaining a second opinion.
