Brain Tumour Awareness Month

March is Brain Tumour Awareness Month. It’s when we shine a spotlight on the impact of brain tumours and the urgent need for better research, care, and support. Throughout the month, charities, clinicians, patients, and families come together to raise public understanding of the more than 100 different types of brain and the realities of living with the disease. It’s a time when we share stories, communities mobilise, and the wider public is reminded that brain tumours—despite being relatively rare—carry some of the most severe consequences of any cancer. At brainstrust we know that a brain tumour diagnosis is devastating, lives are turned upside down and we will highlight our unique role in providing the emotional and practical support that is so desperately needed but mainly unfulfilled by clinical pathways.

The purpose of Brain Tumour Awareness Month is to raise awareness and drive for change: to push for earlier diagnosis, fairer access to treatment and rehabilitation, stronger mental‑health support, and increased investment in research that reflects real patient need.

Donate to brainstrust during Brain Tumour Awareness Month

Donate This Brain Tumour Awareness Month

On average 79 people in the UK hear the words ‘you have a brain tumour’ every day. This is made up of 44 metastatic, and 35 primary diagnoses.

For them and their loved ones, the road ahead looks scary and uncertain. Our list of where your donation goes shows how your generosity will support the brain tumour community, ensuring brainstrust can be here to help everyone access the tools they need for a brighter tomorrow.

Together, we can make a life-changing difference.

DONATE NOW

Where Your Donation Goes

£20 could pay for someone to attend one of our tailored online workshops delivered by the brainstrust team and expert speakers from across the UK. Our bespoke webinars cover a wide range of essential topics to help our community thrive.

£50 could provide someone with a brain box, our must-have support toolkit for people newly diagnosed with a brain tumour. Customised for each individual every brain box includes a selection of brainstrust-accredited resources to help them feel informed and prepared to face the road ahead, as well as small gifts to help them practise some self-care.

£100 could keep our support line connected for a whole day. It covers the essential phone system costs that allow calls to come through reliably and securely, so anyone affected by a brain tumour can reach us when they need to. Your fundraising ensures the line is open, accessible and ready, providing the vital lifeline for those seeking support.

£300 could fund the cost of six coaching sessions for a patient or their loved ones. Coaching helps people living with a brain tumour to take control and focus on the things that matter the most to them. Patients and caregivers will come away from their coaching sessions with strategies and tools that help them achieve clarity, and improve their quality of life.

£500 will enable brainstrust to ensure that people with a brain tumour are directly involved in research proposals, so that research meets their needs. This vital work ensures that clinical research is helping people to live better with a brain tumour – today.

Help us double the number of people we support

Last year we supported 4577 brain tumour patients and carers. This is the highest figure in our 20 year history. However, with around 79 people a day receiving a brain tumour diagnosis, this means there are many more people that desperately need our support.

By 2030 we are aiming to double the number of people we support living with a brain tumour, and with an average cost per person supported being £146, we will need your help to do it.

Fewer than 30% of brain tumour patients receive any psychological or psychosocial support, and that’s why it is vital that we support more people along their brain tumour journeys. 

Donate to brainstrust during Brain Tumour Awareness Month
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Patient Stories

Read below how a brain tumour has impacted our patients lives, beyond the hospital, treatment and scans. The day to day challenges make life with a brain tumour confusing, lonely and fearful. And that’s where we come in. We hope that these stories serve as testament to the difference that we can make for people living with a brain tumour, and that with your help we can enable them to live their best possible day. 

You can read more Patient Stories here.

katiestory

Katie’s Story

“Three days later, I had an aneurysm. Everything spiralled. What should have been a short recovery turned into a nightmare. I underwent three more brain surgeries, was placed in a medically induced coma, and spent a week in intensive care. I don’t remember those days — but my family does. My short hospital stay became five long weeks.”

Read Katie’s Story
rachelstory

Rachel’s Story

“in the summer I started becoming clumsy and a bit dizzy, tripping over every now and then. In September I had terrible eye pain but my optometrist couldn’t see anything wrong. Then in October I collapsed and fell in the street. It felt like someone had hit me really hard in the back. Passers-by came to my rescue and I sat for a while with my legs shaking uncontrollably.”

Read Rachel’s Story
nikkistory

Nikki’s Story

“I remember the scan, the claustrophobia and the noise of it. I remember the tiny battered mobile unit in the hospital car park where it took place. I remember the radiographer telling me afterwards that I should not go home. I remember sitting on an uncomfortable trolley behind a blue curtain in A&E for hours. I remember a senior nurse, sitting on the end of the bed and holding my gaze as she told me there was a lesion on my brain. What I don’t remember is feeling anything at all.”

Read Nikki’s Story

Introduction

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: http://cancerdata.nhs.uk/standardoutput

Incidence

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

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

Mortality

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.

Non-malignant

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

Survival

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

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

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

https://www.brainstrust.org.uk/advice-glossary.php