Downloads & Resources
Here are all the brainstrust resources, designed to help you feel less alone and more in control, in one place for you to download.
The brain tumour patient guide
The 2018 brain tumour patient guide is freely available to brain tumour patients and doctors and nurses working in relevant specialties. It explains the care you should be getting, as suggested by the latest NICE guidelines.
Find out more and download the guides
The brain box
The brainstrust brain box – the ‘must have’ support toolkit for people with a new brain tumour diagnosis and their carers.
So to assist brain tumour patients, we’ve launched this unique invaluable aid to keeping on top of things.
If you are a brain tumour patient, or if you are looking after someone who has a brain tumour, the box won’t cost you a penny. We just need to know a little bit more information about you before we send you your box. Please complete to the short form below to request your brain box:
Find out more and get your box
Many patients find that they are left to manage their care pathway for themselves. brainstrust has developed this resource with the National Hospital for Neurology and Neurosurgery, to help you navigate your journey.
My Radiotherapy Book
We know how confusing a brain tumour diagnosis is and the follow treatments can be. This resource will help you understand, and take control.
The Fatigue Toolkit
This resource is really important as it enables patients and caregivers living with a brain tumour to understand what is meant by fatigue and to self-manage brain cancer related fatigue.
Proton Beam Therapy Guides
With the NHS Proton Beam Centre at The Christie, Manchester, treating its first patient in January 2019, interest is growing in proton therapy. It is therefore important to have independent, factual information available on the treatment and what it offers. It is also important to you have a balanced view, which puts Proton Beam Therapy in context with respect to other treatments. This is crucial for people with a brain tumour (adults as well as children), their caregivers and stakeholders in the public and the private sectors.
Tips From a Carer
“We often felt we were Mr and Mrs Invisible. People couldn’t see the new us, only knew how to be comfortable with the original us, not the new 2.0 versions post diagnosis. You know people want to help but that they are scared to open that door, not knowing what they’ll find or what’s involved. It’s not a judgement, everyone has their own pre-conceived ideas. I know we did!”
In this resource, a couple share their tips for when someone you love has been diagnosed with a brain tumour: including questions it’s OK to ask, the best ways to offer support, and lots more.
The Little White Book
A comprehensive, easy to navigate compendium of UK brain tumour support resources. You can access an online copy through our online catalogue with www.issuu.com/brainstrust.
We also produce regional editions of ‘The Little White Book’, signposting all of the best support available to you, wherever you might live. Click below to download your relevant guide.
- Sheffield Little White Book
- Merseyside Little White Book
- Greater London Little White Book
- South East Scotland Little White Book
- Glasgow Little White Book
- Greater Manchester Little White Book
- Tees Valley and surrounding areas Little White Book
- North West Children’s Little White Book
- Aberdeen, the Highlands and Surrounding areas Little White Book
How to Have a Difficult Conversation Guide
We know how hard it is, explaining brain cancer, and having to hold those difficult conversations.
This guide helps families with approaching these moments. It features tips that will help you can get your thoughts together and clarify how you feel about what it is you’re facing, so that you can hold better conversations and feel more in control.
Brain Tumour Know Hows
When it comes to brain tumours, accessing simple, factual information can be difficult. There is a great deal of conflicting information available that can leave you feeling confused and overwhelmed. We’ve created the brain tumour Know Hows so you can access concise, clear and impartial information about current topics. As with all of our resources, where they involve health information, our Know Hows are written following our rigorous Information Standard process, so you know that the information is trustworthy and reliable.
At brainstrust we want everybody affected by a brain tumour to be informed and resourced to live the life they want. When you understand a topic, you can make the right decisions for you. These Know Hows will probably lead you to do further reading, but they provide an excellent starting point so you can fully engage with issues faced by our community.
We think behaviour and personality change (BPC) is up there with fatigue when it comes to challenge. It is one of those topics for which is there is no silver bullet, no magic pill.
It makes everyone feel disempowered, helpless and daunted. We know that up 60% of people diagnosed with a brain tumour experience BPC, and we know too that there is little support available for this.
Our behaviour and personality change resource covers:
- Understanding behaviour and personality change (BPC)
- What we mean by BPC
- Causes of BPC
- What is different about BPC when living with a brain tumour?
- How is BPC manifested?
- How do we measure BPC?
- Mood journals
- What are the strategies to help me cope?
- Treatment options
- Self-help strategies
- Looking after someone with BPC
- Who can help?
- Questions to ask
- What to do in a crisis
Download your free digital copy of the behaviour and personality resource here and your mood journal template here.
A guide for talking about advanced cancer
Not all brain tumours recur, but the highly aggressive ones do. When this happens, there are still options on the table, but it is an entirely different situation from an initial diagnosis – not least because when a brain tumour comes back it is not the same tumour that first presented. And this is one of the reasons why they are so hard to treat; we have limited treatments and the cancer just keeps mutating and finding its way through.
So it is important that you have the right kinds of conversations when this happens, so that you can decide what is important to you and your loved ones. You know the future is uncertain and you aren’t reassured by hearing that, “you’ll beat this.”
No matter what your role is, in any conversation about a life limiting illness, you will need to respond with emotion, make decisions that might be at odds with other people’s, deal with the stress of meeting expectations (or not) and nurture hope when the future looks bleak. You’ll be reassured when your family, friends, and caregivers recognise your reality and are with you for whatever comes. You may be given advice that you haven’t asked for and sadly, people who you thought had your back may not be there for you. Knowing what’s important to you, how you spend this time and how you want to be with each other can bring clarity and peace. This will become your true north. Being able to create the moment where the conversation about these things can be a real gift; this guide helps you to do this.