Join the caring community and learn from others

We know that being a caregiver for someone with a brain tumour can be lonely and isolating. Speaking with others who understand and are in a similar situation can be a vital part of feeling better connected and part of a community.

Thrive events

We run regular ‘Thrive’ workshops, on a variety of different themes and subjects that we know are useful to the brain tumour community.

Our workshops are all facilitated by our Support Specialists, who are expert coaches.

brainstrust patients at workshop

Recent workshops have included:

  • Managing fatigue
  • Behaviour and Personality Change
  • Cannabinoids
  • Mindful drawing
  • Diet and Nutrition
  • Coaching and Communication
  • Hypnotherapy


Find a workshop and sign up here

We know that when someone you love is diagnosed with a brain tumour, things can quickly spiral and change like the tide. Any sense of control that you may have once had over daily life can disappear and become replaced by feeling anxious, uncertain and overwhelmed.

Our brain tumour workshops give you practical strategies and tools to tackle challenges that arise as a caregiver. With the help of expert guest speakers for some topics, we are also able to help you make informed decisions about brain tumour treatment and care for your loved one.

We’re hosting a fortnightly virtual meetup, just for carers, so you can connect to people that understand, ask your questions and be heard in a safe, friendly and welcoming space. Come and chat – no agendas. Just pop in to say hello! Fortnightly on Thursdays, 1pm-2pm.  Book your spot here.

View our upcoming events calendar

Please note: All of our workshops are currently in an online format because of the Covid-19 pandemic.

Peer support

We know there is great value in connecting with others one to one. This is why we have our Peer Support service.

You may have a specific question about caring for someone with a brain tumour, or you may just want to speak to someone who understands.

The aim of the service is to directly connect caregivers who have a shared or similar experience in order to help you feel better connected and supported.

How often and how you communicate with each other is up to you, but a Support Specialist will oversee the relationship and keep in touch to make sure it is working for both of you.

Access Peer Support

Private Facebook group

We have a welcoming and supportive online community in our closed and carefully moderated Facebook group. With over 2500 members, it is a safe space for you to share experiences and support others. To join the group search ‘Brain Tumour Support brainstrust’ and answer the joining questions.

Join the brainstrust support group on Facebook

brain tumour hub

The brain tumour hub is an easy to navigate database of brain tumour support resources and clinical trials across the country. Many of these resources are helpful to you as a caregiver.

Simply pop in your postcode and the hub will show you details of services in your area.

The brain tumour hub

Handle With care- a memoir by Rochelle Bugg

The book in the authors words:

Handle With Care follows me as I nurse my mum through a brain tumour and reflect back on losing my dad to cancer when I was 14. Based on the successful blog I kept while caring for my mum, the book combines my story with practical advice and a healthy dose of humour. 

Divided into key themes (such as Diagnosis, Family, Hope, Dying and Healing), I’ve thought back to what I wish I’d known, what I wish I’d done (and what I wish I hadn’t done!) so that it might help others who have a loved one with a life-limiting illness. I wrote it for the people who have to grow up before they’re ready. For the people that want a reassuring hug from their loved one, only to realise it’s them who now has to give that hug. For the people who find themselves in a role they never asked for, but who are nevertheless determined to do a good job. 

Whether it’s a quote that clicks, a practical tip that comes in handy, or a story that strikes a chord, my hope is that by reading this book, what you are/have been/are about to go through is a little less painful, or at least a little less lonely.

Find out more

Discover our resources, designed to help you feel less alone and more in control.

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

sidebar brain tumour hub


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: