Wear Grey for Brain Tumours and brain tumour awareness

Every day, around 30 people will hear the devastating and life changing words ‘you have a brain tumour’. 

This diagnosis prompts a thousand questions from the profound to the practical. It’s also accompanied by loneliness and desolation. This is where brainstrust comes in. We are here for people, to coach them to be resilient and resourced, and to give them the answers and support they need in their time of need.

However, many who are diagnosed with a brain tumour will face the road ahead without the support and information they need. It’s time for this to change.

From 1st to 7th October 2024, Wear Grey returns. This community campaign is to show 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.

And, this year you can help in three ways.

Shop grey.

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.

Each year we launch a new line of merchandise for you to pick up and show your support for the community. This year’s limited CHOOSE GREY line will be landing soon. Make sure to register your interest to be the first to know.

Wear Grey

Over the years this campaign has reached over 1 million people and has raised tens of thousands of pounds for brainstrust’s work. This is because it is easy to join in.  Help us reach more people with vital coaching and support, and help the world understand what people with a brain tumour is up against – simply pick a day between the 1st and 8th of October, choose something grey to wear, and let people know why you chose grey.  We also encourage you to make a small donation by text or online to brainstrust. Don’t forget to share your day in grey on your socials and use #brainstrust #weargrey

Go the extra mile

You can of course take Wear Grey further. Take the day to work or school and encourage colleagues to take part. Hold a Wear Grey coffee morning of cake sale, go for a run in grey, skydive in grey, or turn your local pub or social group grey with a quiz. Whatever you have up your (grey) sleeves, we can help. Simply get in touch and let us know what you’re thinking and we’ll be right beside you.

Share Grey.

Wear Grey has reached many many people over the years, and the campaign raises awareness of the hidden challenges we face, and also the support that is available.

We can only do this with your voice. If you or a someone you love or care for has been affected by a brain tumour your experience is vital. Share your support for Wear Grey  in 2 ways:


1) Make a short video of you wearing grey and, explain in the video why you are supporting Wear Grey and brainstrust’s mission to support and help the world understand. All you have to do is p
ost your video or to your channels and don’t forget to #brainstrust and #weargrey. Listen to our CEO Will describe why he’s wearing grey this year.

2) Post an update to your social channels. Finish the sentence “I Wear Grey today, for the people of brain tumour community and brainstrust so that…” And use #brainstrust and #weargrey

Will’s brain tumour story

ve29x2wf

Shaun Skinner:
Wear Grey 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