There are over 60,000 people in the UK living with a brain tumour. 30 more get diagnosed every day. From the most lethal brain tumour, a glioblastoma, to the long-term complications that come with a meningioma, every diagnosis changes someone’s life, and the lives of their loved ones.

Choose Grey. Change Lives.

Every year on 1st October, we wear grey – the internationally recognised colour for brain tumours – to give visibility to this invisible illness. People from across the UK come together to wear grey and show their support for people like Georgia*, who are living with a brain tumour.

“Each day I put on my brave face. I bury my fears, try to continue as ‘normal’. I am a wife, a mother, a daughter, a sister, an employee. I am surrounded by many, yet I feel so alone. I am lost” Georgia

This year, it’s never been easier to get involved. No matter who or where you are, you can take part in Wear Grey in three easy steps.

BRAND NEW WEAR GREY MERCH AVAILABLE NOW.

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Visit our online shop

When you make a donation, or buy any of our Wear Grey merch, we’ll keep you up to date with the campaign. You can change your preferences at any point by clicking here.

Living with a brain tumour in lockdown – why we wear grey

This year has been unlike any other, but brain tumours didn’t stop for Coronavirus, and neither did we.

30 people are still being diagnosed with a brain tumour every day. In a world that has been more isolating than ever, people have been alone when they find out they have this devastating illness. People have been unable to visit loved ones in hospital. Necessary shielding has prevented precious time from being spent with family and friends. People with a brain tumour have suffered two-fold, and that’s why it is more important than ever that specialised, dedicated support is available for them and their loved ones.

We’ve been working round-the-clock to keep our support going. We’re there for people when things are scariest, and we’ll be here every step of the way on their journey. Making sure they can have their best possible day, whatever that looks like for them. Through our coaching, workshops and resources, we are tackling isolation and building communities for people with a brain tumour.

“Thank you to all who run the webinars, I gain so much. From learning and understanding, to having a welcome break from reality and being able to be part of a community where we can relate to each others’ experiences”

So when you choose grey, and donate to brainstrust, you really are changing lives.

Donate to the appeal

If you have any questions, get in touch with our fundraising team!

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Go the extra mile for people with a brain tumour.

Set up your own JustGiving fundraising page or Facebook fundraiser.

*Subject to availability. While stocks last.

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Texts cost donation amount plus one standard rate message

Shop Grey!

We have tons of Wear Grey merch to choose from in our online shop. From t-shirts to bracelets, and wristbands to pin badges – there’s something for everyone!

Want to wear something new this year? Keep an eye out for new Wear Grey 2021 long sleeve tees – coming soon!

Don’t forget that you can buy and sell any of our merchandise, which helps to spread the word. We’ve just launched a range of items perfect for daily wear, meaning you can show your support and raise awareness all year round.

GET YOUR GREYS

Why Grey?

When you wear grey with us, you’ll be joining a community of incredible people who have raised over £120,000 over the last seven years. We wear grey thanks to Shaun Skinner, who approached brainstrust in 2012 to help him bring an idea to life. ‘Go Grey for a day’ existed in the US, but Shaun had recognized a strong desire in the UK community to raise awareness of brain tumours, ‘the forgotten cancer’, this side of the Atlantic. It made sense to join the two events up, and with the US event in October, so Wear Grey was born.

Sadly Shaun died from his brain tumour in January 2017, but along with his passion for helping others, Wear Grey is part of his incredible legacy, and for many of us an important occasion to remember loved ones.

Grey is the internationally recognised colour that represents brain cancer, and when we wear grey we stand in solidarity with everyone affected by this devastating diagnosis.

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