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

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.

Find out more and get your box

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

patient guides

The brainstrust support catalogue

The brainstrust support catalogue takes you through the various ways brainstrust can support you. It’s a great starting point to find out more about what we do and how we can help you.

Click here to download the support catalogue.

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.

Download my radiotherapy book

radiotherapybook finak

Behaviour and personality change (BPC)

Up to 60% of people diagnosed with a brain tumour experience BPC, and until now there has little support available for this.

Click here to download the behaviour and personality change resource, and download a mood journal template here.

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

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).

lwb final

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.

Find all of our know hows here

End-of-life care

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.

Find out more and access the resource.

Proton beam therapy (PBT) guides

proton beam covers september 2020 scaledIt 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.

Find out more and download the PBT guides here.

My fatigue book

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.

Find out more and download here

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Tips from a brain tumour patient’s caregiver

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.

Download your copy here.

Who’s who in your clinical team

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.

Download it now

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.

Download the guide now.

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.”

Click here to download the Advanced Cancer Coalition’s guide to talking about advanced cancer.

What to expect if you are diagnosed with a suspected brain tumour

When you hear the words “you may have a brain tumour” it can be a terrifying, isolating time, causing uncertainty.

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.

Download the leaflet.

Did this information make you feel more resourced, more confident or more in control?

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Coaching with brainstrust

Coaching with one of our support specialists can help you understand what’s important to you. We listen and ask questions, collaborating with you to create a plan to reach specific goals.

Coaching testimonial
sidebar radiotherapy


The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here:


The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.


Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites


The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.


Not cancerousNon-malignant tumours may grow larger but do not spread to other parts of the body.


The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.


More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here: