When Stu was diagnosed, brainstrust was probably the most comprehensive source of brain tumour information I found, and I found a lot of information. Their website became one of the places I went when I was trying to understand what was happening, what our options might be and what else I should be looking into. There was information for patients, information for caregivers, treatment information, practical guidance, clinical trials and resources that helped explain things nobody prepares you to suddenly need to know. We didn’t contact brainstrust for personal support, although that’s a huge part of what they do. For us, their value was information. At a point when I was trying to learn an entirely new language while simultaneously dealing with the fact that my husband had an incurable brain tumour, having somewhere that brought so much of it together was incredibly useful.

WHY WE FOUND BRAINSTRUST USEFUL

One of the hardest things at the beginning is that you don’t yet know what you need to know. You don’t know which questions are important, you don’t necessarily understand what everyone in the medical team does and you don’t know what normally happens next, what you can ask for, where you have choices or what other options might exist outside the pathway immediately in front of you. There is an enormous difference between Googling glioblastoma and finding information that helps you do something. That was what I liked about brainstrust. There was practical information that helped me understand the world we’d suddenly landed in and then gave me somewhere else to go when one question inevitably created another five. I wouldn’t try to read the entire website from beginning to end because nobody needs another enormous job when they’re dealing with this. Use what you need when you need it.

INFORMATION WHEN EVERYTHING IS NEW

If you’ve only just been diagnosed, this is probably where I’d start. brainstrust has patient guides covering different stages of the brain tumour pathway, from diagnosis and treatment through follow-up, survivorship, palliative care and end-of-life care. They explain what should happen at different points, what standard of care you can expect and, crucially, give you questions you might want to ask your medical team. That last bit matters because there were so many occasions when I only knew to ask a question because I’d found something while researching. You cannot ask about something you don’t know exists. The patient guides are designed for both patients and caregivers and are free to access. They were endorsed by NICE in 2019 as being aligned with its evidence-based guidance.

HELP WITH THE QUESTIONS

This is probably the bit I appreciate even more with hindsight. brainstrust doesn’t just explain brain tumours. A lot of its resources are about how to navigate having one. There are practical Know Hows covering things like getting a second opinion, dealing with overwhelm, finances and benefits, returning to work, driving, fatigue and other things that become part of life alongside the treatment.

Their second opinion information is useful because it explains the practical side of getting another opinion as well as the reasons you might want one. brainstrust can’t give you a medical second opinion themselves, but they can help you understand the process and where you might go for one. We sought other opinions during Stu’s illness and I would always want someone newly diagnosed to understand that asking another doctor to look at your case is an option. It isn’t being difficult or betraying your existing medical team. Sometimes you just need another pair of eyes.

SUPPORT BEYOND THE INFORMATION

This is the part of brainstrust we didn’t personally use, so I can’t tell you what their one-to-one support felt like from experience. What I can tell you is that it exists, and there is considerably more of it now than I understood when Stu was ill. brainstrust has a 24/7 helpline for people with a brain tumour and their caregivers. They also offer coaching with support specialists, peer support, online groups and events. Their coaching isn’t medical treatment or someone making decisions for you. It is designed to help you work out what matters to you, what you need and what practical steps might help when everything feels completely overwhelming.

Their peer support service can also match people affected by a brain tumour with someone who has relevant lived experience, whether that’s someone with a diagnosis themselves or someone who has cared for someone with one. There are also specific online communities, including support for people living with high-grade brain tumours and their supporters. I wish I’d paid more attention to this side of what they offered. I was very good at looking for information for Stu, but I was considerably less good at looking for support for myself.

THE BRAIN TUMOUR HUB

The Brain Tumour Hub is worth knowing about separately because it brings together brain tumour support resources and information about clinical trials. You can search for support according to where you live, rather than trying to find every local service yourself. For trials, the Hub now directs people to ClinicalTrials.gov, where you can search by diagnosis, recruitment status and country. As with every clinical trial search, finding a trial does not mean someone is eligible for it or that it is an appropriate treatment, but when you’re trying to work out what exists, having somewhere sensible to start is useful.

RESOURCES WORTH KNOWING ABOUT

There is far too much on the brainstrust website for me to reproduce here, and there would be absolutely no point in doing that. But there are a few things I would want someone newly dealing with a brain tumour to know exist.

THE BRAIN BOX

brainstrust offers a free support toolkit called the brain box for people with a brain tumour diagnosis and their caregivers. It can be tailored with resources relevant to your situation and is designed to give you practical information and tools in one place.

PATIENT GUIDES

These take you through different stages of the brain tumour pathway and include suggested questions for your medical team. If you’re sitting there thinking I don’t even know what I’m supposed to ask, start here.

KNOW HOWS

These are shorter practical guides for the things that sit around a brain tumour diagnosis as well as the tumour itself, including second opinions, overwhelm, finances, driving, work and fatigue. All the stuff that suddenly becomes part of your life too.

THE SNAGGLE TOOTH SPLAT

This was on our original page and it still exists. It’s an illustrated book designed to help families explain a brain tumour to children and can be used when a child has a brain tumour or when a parent has been diagnosed. I think resources like this are incredibly important because a brain tumour doesn’t only happen to the person whose name is on the scan. It happens to a family.

HINDSIGHT

WHAT WE KNOW NOW THAT WE WISH WE’D KNOWN THEN

I wrote on the original version of this page that I wanted everyone to find brainstrust right at the beginning, and I still do. What I would change now is how I used it. I consumed information like it was my job and, in some ways, it was. I was trying to understand enough to advocate for Stu, find options and make sure we hadn’t missed something that might help him. But information and support aren’t the same thing. We used the information, but we didn’t use the support. Knowing what I know now about what caring for someone with GBM takes from you, I think I’d pay far more attention to both.

I’d still read, obviously. I’d still research the treatments, ask the questions, look for trials, get other opinions and probably have an offensive number of tabs open on my laptop. But I’d also recognise much earlier that the person doing all of that might need some support too. If you’ve found this page right at the beginning, you don’t need to understand everything today. Find the information you need for the next decision, write down the questions and ask for help when you need it, then deal with the next thing. Sometimes that really is enough.

CURRENT INFORMATION · 2026

WHO CAN USE BRAINSTRUST?

brainstrust supports people affected by a brain tumour as well as their families and caregivers. You don’t have to be the patient to ask for help.

24/7 SUPPORT

brainstrust currently operates a 24/7 support helpline on 01983 292 405. You can also contact the support team at hello@brainstrust.org.uk.

These details were checked in October 2026.

COACHING AND PEER SUPPORT

Support specialists offer coaching designed to help people identify what they need, work through specific problems and make practical plans. brainstrust also offers peer support, giving people affected by a brain tumour the opportunity to connect with someone who understands something of what they’re going through.

GROUPS, EVENTS AND DIGITAL SUPPORT

There are opportunities to connect with other people affected by brain tumours through brainstrust’s community and support services, alongside digital information and resources that can be accessed when you need them.

INFORMATION AND PRACTICAL RESOURCES

The current website includes patient guides, Know Hows, tumour-specific information, downloadable resources, the brain box and information covering different stages of the brain tumour pathway.

BRAIN TUMOUR HUB

The Brain Tumour Hub remains available for finding support resources and exploring clinical trials. Its trial search links through to ClinicalTrials.gov, where trials can be filtered by diagnosis, recruitment status and country.

Medical disclaimer: This website shares our personal experience of glioblastoma and is not medical advice. Always discuss treatment decisions with your medical team.

FURTHER READING & RESOURCES

BRAINSTRUST

The main brainstrust website and the best place to start if you want to explore everything currently available.

PATIENT GUIDES

Free guides covering different stages of the brain tumour pathway, including diagnosis, treatment, follow-up, survivorship, palliative care and end-of-life care.

THE BRAIN BOX

Information about the free brain box support toolkit and how to request one.

SECOND OPINIONS

Information about seeking further medical opinions, including the questions and practical issues to consider.

TOOLS TO HELP ME TAKE CONTROL

Practical information, downloads and resources designed to help patients and caregivers navigate a brain tumour diagnosis.

LIVING WELL

Information and resources covering work, finances, fatigue, caregiver support, peer support and other aspects of living with a brain tumour.

BRAIN TUMOUR HUB

Search for brain tumour support services and explore current clinical trials.

CLINICALTRIALS.GOV

The clinical trials database used by the Brain Tumour Hub for its current trial search.

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