In Campaign News

Wow. You did it. You definitely were not benign about brain tumours on 1st October 2013.

Wear Grey for Brain Tumours 2013

So the dust is beginning to settle after ‘Wear Grey for a Day 2013’ and we’re able to report the following:

  • An estimated 10,000 people took part
  • Over £7,000 has been raised so far. This means brainstrust can do even more to help. We will continue to lead the way in helping brain tumour patients and carers solve real, every day issues.
  • 14,000 stickers were stuck
  • 5,000 flyers flew 
  • Tons of incredible photos! Click here for just some of them

All of this was thanks to Shaun Skinner and the incredible work of our community of supporters. In fact I think we will start calling you all Angels instead.

Unprecedented engagement

Wear Grey for brain tumours 2013 logoSo Angels, because of your tenacity, your connections and your hardwork, we saw an unprecendented engagement with people, schools, universities, celebrities and businesses.

You really got the word out there. 

Hopefully all of these relationships can be fostered in months and years to come, so we can all continue to grow Wear Grey for a Day to raise awareness of, and solve the real problems that burden people battling a brain tumour.

We’ve also been blown away to hear that people wore grey in Australia, New Zealand, Malaysia, Singapore, South Africa, Morocco, Nigeria, France, Netherlands, Norway, Sweden, USA, Canada, Ireland, Italy, Gibraltar and Dubai. You took Wear Grey global!

So in short – THANK YOU SO MUCH for helping us let the world know that every brain tumour diagnosis has an impact.

And that just because all might look ok on the outside, doesn’t mean to say that someone battling the disease isn’t having a tough time. We will continue to monitor brain tumour patient and carer feedback over on our pinboard at www.braintumourawareness.org.uk and hopefully all your work in 2013 will mean that in 2014 fewer people are reporting that they feel ignored, and isolated, and the use of the word ‘benign’ will change.

Building communities on the day we wore grey

Meet Up logoWe spent the evening of 1st October at Meet Ups across the UK. We were in Glasgow, Sheffield, London and Cardiff. This is the first time we’ve run the events concurrently – and what a success it was.

Over 80 people from these incredible communities got together for conversation and lots of laughs and hugs. And all wearing grey, of course. 

 

The Meet Ups offered brain tumour patients, their carers and clinicians the chance to get together in an informal environment, to share experiences and to meet others in the same boat. We know how isolating things can get and how much you can learn from one another – the true experts. To join in with future Meet Ups, register on www.meetup.com/brainstrust

 

You are an Angel. 3 tips to make the world better for brain tumour patients.

Whilst only time will tell whether the world is a better place for brain tumour patients and their carers as a result of your hard work on 1st October, we have some simple tips to help make things better in the short term.
 
If you meet someone who is battling a brain tumour, either patient or carer remember these simple things:

3 tips to help a brain tumour patient or carer

Your Photos – Wear Grey 2013

And finally, just some of the pictures that were shared during the day on 1st October:

Wear Grey for Brain Tumours 2013

Wear Grey for Brain Tumours 2013

Wear Grey for Brain Tumours 2013

Wear Grey for Brain Tumours 2013

Wear Grey for Brain Tumours 2013

Wear Grey for Brain Tumours 2013

Wear Grey for Brain Tumours 2013

Wear Grey for Brain Tumours 2013

Wear Grey for Brain Tumours 2013

Wear Grey for Brain Tumours 2013
Wear Grey for Brain Tumours 2013

Meet little brainstrust – new nationally accessible and dedicated support service for children and familiesCharity News
Aston Hunter is raising an incredible sum for brain tumour patients and carersFundraising

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