Our story

2006

brainstrust is founded by Helen and Peter Bulbeck with the goal of helping Megan Hill (nee Jones) and others like her to access intra-operative MRI brain surgery in the United States.

brainstrust is registered with the Charity Commission.

2007

June 2007, Meg’s tumour is successfully removed at Boston’s Brigham and Women’s Hospital

With it now apparent that there is no effective support available for people with a brain tumour, brainstrust’s board of Trustees decide to expand, re-investing a small surplus of funds so that people don’t have to feel as lost as Meg’s family did, from the point of a brain tumour diagnosis.

2008

brainstrust’s volunteer team expands to include one full time member of staff.

2009

Work begins on our first patient and carer resources – the ‘Who’s who guide’, ‘brain book’ and 'brain box’.

brainstrust.org.uk is re-launched, with a new focus on providing online information and support for people with a brain tumour and their carers.

2010

The first brainstrust Meet Up is held in Winchester.

The brain box is launched – a groundbreaking toolkit, free for people with a brain tumour that helps them manage the complicated and confusing journey from when you are diagnosed.

The Rank Foundation commit to 3 year funding of the UK’s first brain tumour support specialist. The first step towards making 24/7 coaching led support available to the whole of the UK brain tumour community.

2011

Work starts on the Brain Tumour Patient Information Portal – a project to help people with a brain tumour understand their condition better by granting online access to National Cancer Registry held records.

www.braintumourhub.org.uk is launched, with funding from the Nominet Trust, to help patients and carers access support in their area, and clinical trials relevant to their tumour type.

Our information for people with a brain tumour is awarded NHS England’s Information Standard Accreditation.

2012

Work with Edinburgh Cancer Centre, the University of California, San Francisco and Coventry University demonstrates the positive impact of coaching for brain tumour patients.

brainstrust join forces with Cancer Research UK to make the Patient Information Portal available to all cancer patients.

brainstrust’s board of Trustees are awarded ‘Trustee board of the year’ at the Wessex Charity Awards.

brainstrust opens dedicated counselling service for the brain tumour community.

2013

Working with Public Health England’s National Cancer Registration Service, we identify, for the first time, the number of people living with a brain tumour in England.

Julian Fellowes shows his support for our work, joining us for dinner at Knightsbridge Barracks and raising £20,000 in the process.

The acclaimed brain tumour patient guide is launched.

Wear Grey attracts 10,000 people and raises £7,000.

Recognising a need for better support for children and families affected by a brain tumour, brainstrust launches ‘little brainstrust’.

brainstrust secures relationships that improve access to hypnotherapy for people with a brain tumour.

brainstrust’s ‘Northern’ offer is established in Sheffield with an overdue expansion of the team.

www.braintumourawareness.org.uk is launched to drive awarness of the real issues faced everyday by people with a brain tumour.

2014

brainstrust secures official registered Charity status in Scotland.

The Rank Foundation commits to 3 years funding for an additional support specialist and volunteer led programme in the North of England.

‘Walk a mile’ - guide for carers published.

The Brain Tumour Patient Information Portal is shortlisted for a Quality in Care Oncology award.

brainstrust and partners launch the first national brain tumour tissue bank is launched.

2015

brainstrust launches a 5 year vision for a service to help all of the 60,000 plus people in the UK living with a brain tumour, and their carers.

The brain tumour tissue campaign is launched in a bid to improve consent levels.

The brain tumour patient guide is cited as an example of best practice of how to communicate information to patients and carers clearly.

Our policy arm is launched to the public, setting out our agenda and plans for putting the world right, the right way, for people with a brain tumour.

We celebrate our 100th Meet Up, and 500 registered members of the brainstrust Meet Up community.

brainstrust receives a ‘Charity Comms Inspiring Communicator of the year’ award.

Wear Grey raises £30,000 for brain tumour support.

Brain tumour support given due prominence for the first time at the BNOS conference as brainstrust is invited to deliver closing plenary.

brainstrust’s response to the question posed on BBC Radio 2’s Jeremy Vine show ‘is there such a thing as a benign brain tumour?’ receives overwhelming support.

The Patient Information Portal project wins top prize at the NCIN conference in Belfast.

The brainstrust brain tumour support community on facebook reaches 1000 members.

2016

brainstrust celebrates 10 years of brain tumour support.

We publish the first dedicated guide for brain tumour patients undergoing radiotherapy.

A milestone for brain tumour support as brainstrust’s strategy for steady, sustainable growth sees annual funds raised for brain tumour support exceeding £0.5m for the first time.

Four new Little White Books are launched, signposting people to the help available in Merseyside, London, South East Scotland and Glasgow. 

2017

brainstrust joins the Tessa Jowell Brain Cancer Mission. The mission consists of passionate academics, doctors, members of cancer charities, patients, and other individuals to help facilitate a new national strategy for brain tumours. The mission serves as a convening body for these organisations, enabling them to work together to make a tangible change in brain tumour treatment and research. 

We join the #callforclarity campaign, to promote robust and rigorous impact reporting internally and across the charity sector. Alongside this we begin our own journey to take our impact reporting beyond counting beneficiaries and anecdotal testimony, working closely with the National Lottery Community Fund.

The Fatigue programme is launched, with resources to help our community cope with and tackle the debilitating Fatigue that accompanies brain tumour treatment. 316 people access this arm of our service in the first 6 months.

We hold the first UK Brain Tumour Symposium in Milton Keynes in collaboration with Brain Tumour Research. The event sold out in 48 hours.

2018

799 new people accessing phone and email support (up 58% on 2017 – 507/799) , accompanied by the rollout of the brainstrust progress tracker to evaluate the progress that these people make with brainstrust’s coaching and support.

Follow the Seagulls treks expand to Fife, our first year with 3 concurrent 50 mile walks, raising a total of £43,000 for our work.

Collaboration with the James Lind Alliance Priority Setting Partnership (JLA PSP) continues with brainstrust running workshops to develop key research questions around the 10 priorities for brain tumour research as identified by the PSP.

With Public Health England and the National Cancer Registration and Analysis Service, we launch the brain tumour data dashboard, giving unprecedented access to registry held data in an easy to understand format. It helps people understand questions like ‘how many people have a brain tumour like me, near me?’ And ‘how many people like me have brain tumour surgery?’.

First Scottish Symposium held in Glasgow to close the information gap for the brain tumour community and establish a collaborative network in Scotland of charities, healthcare professionals, patients and caregivers.

91% leap in demand for brain boxes (431/824), prompting the first ‘brain box appeal’ which raises £21,000.

Siemens Healthineers nominates brainstrust as charity of the year.

2019

We are able to directly support and coach over 1000 people in 12 months for the first time.

Brain tumour ‘know hows’ launched offering bite sized overviews of vital topics including Proton Therapy, vaccine treatments and cannabinoids.

Follow the Seagulls expands to include a 50 mile trek in Devon and raises a record £70,000.

brainstrust selected to represent patients and caregivers on the NHS England review of the brain tumour patient pathway.

‘First, we are people’ - our new strategy is launched and taking into account all that we’ve learned over the previous 14 years, puts laser focus on the human, practical and cultural contexts in which people find themselves following a brain tumour diagnosis. It sets out our journey to help these people become less isolated, more in control, more engaged with their clinical care and condition, and better resourced.

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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