Need help now? Call our 24/7 Helpline 01983 292 405   hello@brainstrust.org.uk
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
      • Practical help
        • Travelling
        • Money matters
        • Brain Tumour Know Hows
        • 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
      • Taking control
        • Second opinions
        • Working effectively with your team
        • Peer support
        • Peer Support Volunteers
        • Close
    • Help for children and families
    • Tools to help me take control
      • Downloads & Resources
      • Brain tumour data
      • Our partners
      • Support Videos
    • Your stories
    • Our campaigns
      • Tissue donation
      • Raising awareness
      • Quality of life
      • Clinical research
    • Meet others with a brain tumour
      • Meetups and Thrive Events
      • The Brain Tumour Symposium
      • Join the Facebook community
    • Close
  • Someone I know
    has a brain tumour
    • Feel part of the caring community
    • Feel on top of things as a caregiver
    • I want information to help me be a caregiver
    • Feel better supported as a caregiver
    • Information for caregivers about brain tumour treatment
    • Feel less alone as a caregiver
    • Close
  • I am a healthcare
    professional
  • I want
    to help
    • Shop
    • brainstrust Events
    • Do your own thing
    • Volunteering
    • Fundraise at work
    • Set up a fund
    • Leave a gift in your Will
    • Fundraising forms and resources
    • Follow the Seagulls
    • Wear Grey
    • Close
  • News
  • Donate
Brain tumour advice and brain tumour help
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
      • Practical help
        • Travelling
        • Money matters
        • Brain Tumour Know Hows
        • 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
      • Taking control
        • Second opinions
        • Working effectively with your team
        • Peer support
        • Peer Support Volunteers
        • Close
    • Help for children and families
    • Tools to help me take control
      • Downloads & Resources
      • Brain tumour data
      • Our partners
      • Support Videos
    • Your stories
    • Our campaigns
      • Tissue donation
      • Raising awareness
      • Quality of life
      • Clinical research
    • Meet others with a brain tumour
      • Meetups and Thrive Events
      • The Brain Tumour Symposium
      • Join the Facebook community
    • Close
  • Someone I know
    has a brain tumour
    • Feel part of the caring community
    • Feel on top of things as a caregiver
    • I want information to help me be a caregiver
    • Feel better supported as a caregiver
    • Information for caregivers about brain tumour treatment
    • Feel less alone as a caregiver
    • Close
  • I am a healthcare
    professional
  • I want
    to help
    • Shop
    • brainstrust Events
    • Do your own thing
    • Volunteering
    • Fundraise at work
    • Set up a fund
    • Leave a gift in your Will
    • Fundraising forms and resources
    • Follow the Seagulls
    • Wear Grey
    • Close
  • News
  • Donate

Do your own thing

Funky face masks raise vital funds
By Eve Flynn
In Do your own thing, Fundraising News
Posted 16th June 2020

Funky face masks raise vital funds

When Karen was diagnosed with a meningioma last year, she received a brain box, and found the information inside so useful that she decided to give something back to other people with a brain [...]

READ MORE
Adam’s up for the Challenge
By Sophie Bryan
In Do your own thing, Fundraising, Fundraising News
Posted 27th March 2020

Adam’s up for the Challenge

Adam’s up for the Challenge If you keep up to date with the stories we share on social media, you’ll have definitely seen the name Adam Parsons. Adam’s wife, Jenna, sadly passed away last year [...]

READ MORE
Rotary Club of Burnham on Crouch & Dengie Hundred
By Sophie Bryan
In Do your own thing, Fundraising News
Posted 28th February 2020

Rotary Club of Burnham on Crouch & Dengie Hundred

Rotary Club of Burnham on Crouch & Dengie Hundred The Rotary Club of Burnham on Crouch & Dengie Hundred recently made an incredibly generous donation to brainstrust, following Keith [...]

READ MORE
Basil, Sybil & Manuel visit the Isle of Wight
By Sophie Bryan
In Do your own thing, Fundraising, Fundraising News, Uncategorized
Posted 20th November 2019

Basil, Sybil & Manuel visit the Isle of Wight

An evening of hilarious comedy A barrel of laughs was had on Saturday as residents from across the Isle of Wight enjoyed an evening of comedy with Basil, Sybil, Manuel and guests.  RedTIE Theatre [...]

READ MORE
Terri’s story
By Eve Flynn
In Do your own thing, Fundraising, Fundraising News, Patient & Carer Events, Patient story, Uncategorized
Posted 13th August 2019

Terri’s story

Five years ago, Terri’s son, Gary, was diagnosed with an aggressive GBM4 brain tumour. Feeling overwhelmed, Terri contacted places she felt could offer her family support. In her time of [...]

READ MORE
Hayley’s story: Time to travel
By Eve Flynn
In Charity News, Do your own thing
Posted 25th March 2019

Hayley’s story: Time to travel

Time to travel? This Brain Tumour Awareness Month, Hayley has shared her story with us. Since her diagnosis aged 21, she’s been determined to not let her brain tumour stop her getting on [...]

READ MORE
Wear Grey For A Day 2018
By Eve Flynn
In Charity News, Do your own thing, Fundraising News
Posted 9th October 2018

Wear Grey For A Day 2018

 

READ MORE
Categories
  • All News
  • Brain News
  • Campaign News
  • Charity News
  • Fundraising News
  • Events
  • Past Events
  • Research News
  • Press Releases
Recent Posts
  • Maidstone Harriers support #TeamSeth
    Maidstone Harriers support #TeamSeth
    20th January 2021
  • New year, new look – first, we are people.
    New year, new look – first, we are people.
    14th January 2021
  • Who’s Who? The Neuro-oncology CNS
    Who’s Who? The Neuro-oncology CNS
    11th January 2021
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
  • Maidstone Harriers support #TeamSeth
    Maidstone Harriers support #TeamSeth
    20th January 2021
  • New year, new look – first, we are people.
    New year, new look – first, we are people.
    14th January 2021
  • Who’s Who? The Neuro-oncology CNS
    Who’s Who? The Neuro-oncology CNS
    11th January 2021
  • COVID-19: The current state of play for people with a brain tumour
    COVID-19: The current state of play for people with a brain tumour
    8th January 2021
  • COVID-19 and brain tumours: Shielding update Jan 2021
    COVID-19 and brain tumours: Shielding update Jan 2021
    8th January 2021
Stay in touch
Address
brainstrust
4 Yvery Court
Castle Road
Cowes
Isle of Wight
PO31 7QG
Email
hq@brainstrust.org.uk

For help and support
hello@brainstrust.org.uk

Telephone
01983 292 405
Get help in your area
Sign up to our newsletter
© 2020 brainstrust | Contact us | Sitemap | Privacy

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

This site uses cookies: Find out more.