Downloads and resources
brainstrust resources are designed to help you feel more informed, in control and engaged with your care, no matter where you are on your brain tumour journey. Here you’ll find links to download our resources and request a brain box. If you’d like hard copies rather than downloadable versions, please email email@example.com
The brain box
The brainstrust brain box is a must have support toolkit for people with a new brain tumour diagnosis and their caregivers. Fully customisable, with resources relevant to your unique situation, the brain box also comes with treats like teabags and self-care items to remind you to take time to look after yourself.
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
My radiotherapy book
If radiotherapy is a potential treatment option for you, or you have recently had radiotherapy, then this resource will help you understand the treatment and feel more in control.
Up to 60% of people diagnosed with a brain tumour experience BPC, and until now there has little support available for this.
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. We currently have guides for Sheffield, Merseyside, Greater London, South East Scotland, Glasgow, Greater Manchester, Tees Valley and the surrounding areas, Aberdeen, the Highlands and surrounding areas, and the North West (little brainstrust).
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. Brain tumour know hows help you access concise, clear and impartial information about relevant topics like Cannabinoids and the Ketogenic diet.
This resource has been produced with people who have the lived experience of what it is like to care for someone with a brain tumour at end-of-life, with leading consultants in palliative care and clinical nurse specialists who are hospice-based.
It covers all aspects of what dying with a brain tumour entails. This resource provides information on good end-of-life care, how to achieve it, who can help you and how to ensure that you are being informed and making the right decisions that are personal to you. It will take you through options for stopping treatment through to looking at making decisions for where the patient wants to die. Having as much information to hand as possible allows you to be in control, certain that you are making the right decisions for those concerned.
Proton beam therapy (PBT) guides
It is important to have independent, factual information available on PBT 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 brain tumour patient’s caregiver
brainstrust has developed this resource with the National Hospital for Neurology and Neurosurgery, to help you navigate your journey, understanding who makes up your team and what roles they have when it comes to your treatment and care.
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.
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.
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.”
What to expect if you are diagnosed with a suspected brain tumour
This leaflet will help you to cope with the fear and uncertainty. It explains what you can expect to happen next, so you can feel more informed and more in control after your scans. We’ve also included some top tips from those that have been through the same experience.