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Menu
  • About
    brainstrust
    • Our Story
    • Our impact
    • What we do
    • How we are different
    • How we are funded
    • Our people
    • Work with us
    • Contact Us
    • Close
  • Have I got a
    brain tumour?
  • I have a
    brain tumour
    • Help me understand treatment and care
      • Patient guides
      • Who’s in my team?
      • Brain tumour hub
      • Brain tumour symptoms & diagnosis
      • Anatomy & Tumour Types
      • Treatment information
        • Surgery
        • Molecular analysis
        • Therapies
        • Close
      • Clinical trials
      • End of life care
      • Grief & bereavement
      • Workshops for people with Glioblastoma and their caregivers
    • Help me live the life I want
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        • Money matters
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        • Access to work
        • Resources
        • Glossary
        • Close
      • Living well with a brain tumour  
        • Exercise & Rest
        • Be less alone
        • Epilepsy
        • Scanxiety
        • Acceptance
        • Mindfulness
        • Counselling / Hypnotherapy
        • Fatigue
        • Survivorship
        • Behaviour and personality change
        • Close
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        • Second opinions
        • Working effectively with your team
        • Peer support
        • Peer Support Volunteers
        • Close
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The easing of lockdown and the end of shielding
By Jodie @ brainstrust
In Brain News, Charity News
Posted 13th April 2021

The easing of lockdown and the end of shielding

What does the end of shielding and the easing of lockdown mean for people with a brain tumour? Earlier in the year, the government announced details of a roadmap that will see lockdown [...]

READ MORE
New website to support people with a meningioma
By Eve @ brainstrust
In Brain News, Campaign News, Charity News
Posted 12th April 2021

New website to support people with a meningioma

Meningiomas Matter. So does meningioma support. This brand-new website has been designed to help you cope with the challenges of living with and beyond a meningioma, so you can have your best [...]

READ MORE
A wife’s story
By Eve @ brainstrust
In Brain News, Patient story
Posted 24th March 2021

A wife’s story

“First and foremost, I’m his wife” – Dawn’s story When your partner is diagnosed with a brain tumour, everything changes. The added responsibilities, worries and [...]

READ MORE
Cochrane Special Collection – review findings
By Eve @ brainstrust
In Brain News, Research News
Posted 17th March 2021

Cochrane Special Collection – review findings

Cochrane Special Collection findings The Cochrane Special Collection, comprising of systematic reviews of research into brain tumour diagnosis and treatment, were published today. Read about the [...]

READ MORE
11 year old Freya’s brain tumour story
By Khadijha @ brainstrust
In Brain News, Charity News, Patient story
Posted 17th March 2021

11 year old Freya’s brain tumour story

Meet 11 year old Freya living with the affects of a childhood brain tumour So, with the diagnosis of a brain tumour on 5th March 2020 our worlds were turned upside down and everything moved very [...]

READ MORE
NHS services for people living with a brain tumour during COVID-19
By Eve @ brainstrust
In Brain News, Charity News
Posted 9th March 2021

NHS services for people living with a brain tumour during COVID-19

Brain tumour treatment and care during the pandemic The Coronavirus pandemic has caused disruption to lots of different aspects of our daily lives. People living with a brain tumour diagnosis [...]

READ MORE
Research to support children with a brain tumour returning to school
By Khadijha @ brainstrust
In Brain News, Research News
Posted 9th March 2021

Research to support children with a brain tumour returning to school

Do you work with schools or parents to support children to integrate back in to education after a brain tumour? If the answer is yes, then we want to hear from you! We have been working with [...]

READ MORE
Nine NHS hospital brain tumour centres awarded centre of excellence status
By Will @ brainstrust
In Brain News, Campaign News, Charity News, Press Releases, Research News
Posted 2nd March 2021

Nine NHS hospital brain tumour centres awarded centre of excellence status

With 12,000 people diagnosed with a brain tumour every year, and with March being UK Brain Tumour Awareness Month, there has never been a more important time to recognise the work of the teams [...]

READ MORE
The Origin of Carmen Power – supporting children with a brain tumour diagnosis
By Khadijha @ brainstrust
In Brain News
Posted 16th February 2021

The Origin of Carmen Power – supporting children with a brain tumour diagnosis

The Origin of Carmen Power Carmen, now 12 years old, has created a series of short interactive videos  to explain what having a brain tumour was like at the age of 7. The Origin Of Carmen Power [...]

READ MORE
COVID-19 impact on families affected by a childhood brain tumour
By Khadijha @ brainstrust
In Brain News, Press Releases
Posted 27th January 2021

COVID-19 impact on families affected by a childhood brain tumour

Isolation and impact on family life Hearing difficult news alone The biggest challenge for families is that many hospitals only allow one parent/carer to accompany a child, which means that many [...]

READ MORE
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brainstrust’s impact last year

brainstrust impact 2020Our vision is for everyone with a brain tumour to feel less afraid, less alone and more in control.

Last year your support helped:

911 new people access coaching

Our team manage 4948 patient and caregiver contacts

633 people receive a Brain Box

478 people attend 41 supportive events

111,605 people access our online information and support

2800 people in our online community to help each other to feel less alone.

But we know that our impact goes beyond counting people. To read about how people felt after brainstrust’s coaching, click here.

positive outcome 93% of people reported a positive outcome after engaging brainstrust for brain tumour support

NEWS
  • Exaggerated headlines about research do nothing to support people with a brain tumour today
    Exaggerated headlines about research do nothing to support people with a brain tumour today
    13th April 2021
  • The easing of lockdown and the end of shielding
    The easing of lockdown and the end of shielding
    13th April 2021
  • A novel tribute
    A novel tribute
    13th April 2021
  • New website to support people with a meningioma
    New website to support people with a meningioma
    12th April 2021
  • Winners of The Great brainstrust Create-Off
    Winners of The Great brainstrust Create-Off
    7th April 2021
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Registered with the Charity Commission for England and Wales as Charity No. 1114634 and with the Office of the Scottish Charity Regulator as Charity No. SC044642

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

 

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

If you need help using, or understanding this tool, or want help on living life with a brain tumour,
then please feel free to call brainstrust on 01983 292 305, or email hello@brainstrust.org.uk

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