In Charity News

Today, brainstrust and the National Cancer Registration Service of Public Health England are able to share for the first time up-to-date information on the number of people in England and Wales living with a brain tumour.

download the brain tumour infographic
DOWNLOAD THE INFOGRAPHIC HERE (JPG, 1.6mb)

We now know categorically that there are over 55,498 people living in England and Wales with a brain tumour. And there is potential for there to be a further 20% increase in this number when we have accurate data for London and the South East, and a further jump once we have data for Scotland, where we are also helping hundreds of people with a brain tumour and their carers.

Before today, we knew that around 8,600 people a year were diagnosed with a primary brain tumour, but knew that this figure did not reflect the real scale of the challenge that we face – after all, most people we bump into seem to know someone who has been hit by this devastating disease.

With the potential for a 20% increase taken into account, there are around 60,000 people in the UK who could need brainstrust’s help coming to terms with a brain tumour diagnosis and the issues that can accompany this news. brainstrust’s ‘Real Issues’ campaign which ran in Spring this year identified the main challenges for people with a brain tumour, low and high grade, and their carers as follows:

  • Feelings of despondency
  • Challenges faced due to brain cancer being unique
  • Feeling unresourced
  • Practical barriers patients and carers are up against

 

Will Jones, Director of Development here at brainstrust says, “This new data is eye opening. There are a huge number of people that are coping with the effects of a brain tumour, and we can only begin to imagine the burden on carers, particularly when many people have more than one carer. We are hopeful that we can continue to grow brainstrust, and the brain tumour support agenda, so all 55,000 plus people, and their carers, can access everything they need to help them feel they are fighting for the best possible outcome for their diagnosis.”

What does this mean for the brain tumour community?

Well there’s a lot to take in, and many ways to interpret the news.

There are also lots of questions. Is this number getting bigger or smaller? How many people are living with a brain tumour in Scotland? How will the relationship between low grade and high grade tumours change over time? How many of these people can we help? How many of these people want help? Rest assured, we will know the answers to these questions and many more over time. 

If we want to glean some good news from this new information, we know that with this many people affected by the disease, no person battling a brain tumour should feel alone – we can build an even bigger, stronger supportive community.

And we know now that we need to work harder than ever here at brainstrust. We are here for anyone and everyone that needs us, and the leap from helping 1500 or so patients and carers to 60,000 or more is a big one, and we can only do it with your help and support. 

If you need help now, or would like to support us as we build a service to help 60,000 people, call or email 24/7 on 01983 292405 and hello@brainstrust.org.uk

brain tumour prevalence figures - England

So what does 55,498 people look like? Well, it’s a good turn out to watch Arsenal at the Emirates Stadium. And it’s also enough people to fill…

There are enough people in England living with a brain tumour to fill 157 Jumbo Jets

There are enough people in England living with a brain tumour to fill 1057 buses

There’s no dressing this up – we really would like you to buy some Christmas cards from brainstrust this year.Fundraising
What a year for Meeting Up with the community!Charity News

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