For us Brains Trust was the most comprehensive portal for information when Stu was diagnosed. The website is packed full of information for patients and caregivers. We didn't contact them for support though that is something they specialise in. 

Their website is split into easy to use sections:

Have I got a brain tumour
Symptoms and signs and an overview of how a brain tumour is diagnosed including links to really helpful resources. 

I have a brain tumour
There is a drop down box with so much information including guides, practical help, treatment information, clinical trials, grief and bereavement, downloads and resources and access to The Hub. 

Someone I know has a brain tumour
Help, support and information for brain tumour caregivers including how to feel better supported. They also run regular classes  and workshops that aim to give you practical strategies and the tools you need  to tackle challenges. 

I am a healthcare professional
Worjing together with healthcare professionals Brains Trust aim to help people with a brain tumour become involved in their care. They believe working together that not one of us is smarter than all of us and encourage healthcare professionals to offer their patients the right support and resources from Brains Trust. 

It's full of support no matter which way you are effected by a brain tumour diagnosis, theres lots of information for caregivers and patients. And crucially for us they have a page about novel  treatments and trials for GBM for example re-purposed drugs, trials, immunotherapies, checkpoint inhibitors - including research, if its available and approximate pricing. This will give you an idea of what is potentially going to be available and steps that we haven't included on our steps page because we didn't go down that path. 

Novel treatments and trials 

The website has links to download essential guides for brain tumour patients that are so full of all the information you might need. 

Patient guides

What is Brains Trust

In their own words:

"We believe in a world where people with a brain tumour and their loved ones are involved, resourced, confident and connected. They are living the life they want, to the best of their potential, because they are people first, and patients and carers second.

We provide personalised support and build resources that help people with a brain tumour and their loved ones live the life they want after diagnosis. We work with people in the clinical setting to secure the best possible care for people with a brain tumour and we campaign to solve real issues, because we understand what challenges people with a brain tumour face."

"We believe every patient should have access to all possible treatment options. We are here for you, so let us know how we can help."

HINDSIGHT
I would like everyone to find Brains Trust right at the beginning - it would certainly be helpful if these kind of resources were widely circulated by the medical teams because support throughout is definitely needed. The website is jammed full of information for anyone involved and there is a support hub designed to make you feel less alone because we all know how lonely this can be. There are great resources available including an ebook dedicated to helping explain brain tumours to children called The Snaggle Tooth Splat. All in all I think Brains Trust is an essential resource for anyone at any stage of this journey even if you are not UK based. 

Contact details:
Website
The Hub
Email
Telephone
Facebook
Caregivers community

brains trust