Every day, 30 people will hear the life changing words ‘you have a brain tumour’. Too many of these people will face the road ahead without the support and information they need. It’s time for this to change.

From 2 to 8 October, we Wear Grey to help show those people they are not alone, to raise the profile of this devastating disease and to raise vital funds to help ensure everyone affected by a brain tumour diagnosis gets the support they need to live their best life possible.

Whether you wear grey for a family member, a friend, for yourself, or to support others, we need you raise the profile of this all too often overlooked disease and tell the world why brain tumours matter. This year we’re asking you to Wear Grey and chalk for change – scroll down to get involved.

Choose grey. Change lives.

We Wear Grey to make sure no one has to face a brain tumour alone. Get your Wear grey merchandise today and show your support for the brain tumour community.

Our shops host a broad range of merchandise from tees to hoodies, beanies to buffs – there’s sure to be something that fits your style so that you can Wear grey your way.

When you buy from our shop, be assured that every penny goes towards making sure people diagnosed with a brain tumour get the support they need to live their best life possible.

Chalk for change

Chalk for change

Help us make brain tumour awareness impossible to ignore by putting it right under people’s noses, or feet!  This year we need you to take to the streets and chalk for change! Up and down the UK we want to cover the pavements with the symbol of brain tumour awareness – the grey ribbon.

Getting involved is easy:

  1. Order your Wear grey campaign pack.
  2. Find a place to draw your grey ribbon and share it online with your reason for wearing grey – don’t forget the hashtag #WearGrey
  3. Donate £5 via our JustGiving page
  4. Pass it on! Pass a stick of chalk onto someone you know and ask them to chalk for change, donate and pass it on

Can you get your chalk for change around every street in your village, or round every member of your family? See how far you can chalk for change!

Top tips for cheerful chalking

  1. Make sure you’re only chalking on walls that are your own.
  2. Please avoid chalking on other people’s property without permission.
  3. Stick with chalk! It makes an impact, but it also washes away.
  4. If you’re in doubt about whether you’re allowed to chalk, keep your chalking to your own property.

For some chalk inspiration and more information about chalking safely, check out the chalk campaigners at Chalk Riot and Chalk Back. For ideas on how to get your local community involved, check out Northampton’s chalk lightning bolt championship.

Go the extra mile

If you want to go the extra mile for people living with brain tumours, why not host a Wear Grey fundraiser? It’s a great chance to get together and have some fun while raising vital funds for the brain tumour community! Here are a few fundraising superstars to help get you inspired…

Feeling inspired?

Texts cost donation amount plus one standard rate message.
Texts cost donation amount plus one standard rate message.

Shaun Skinner: Founder and Hero

Shaun Skinner

In 2012 Shaun Skinner came to us with an idea, on 1st October he wanted to turn the world grey to raise awareness around brain tumours. Shaun had been diagnosed with a malignant brain tumour in 2007 and was a passionate advocate for the brain tumour community, raising the profile of an invisible illness and the people living with it.

We were devastated when Shaun died in 2017, but we are proud to have been tasked by Shaun to continue Wear Grey. All who knew Shaun now work to grow this event beyond Shaun’s wildest expectations. He has started something incredible that is changing the world for people who are lost, afraid and alone in the face of a brain tumour diagnosis.

We Wear grey as a tribute to Shaun, and everyone whose lives have been lost or affected by a brain tumour.

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 cancerousNon-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