In Brain News, Campaign News, Research News

Dame Tessa Jowell led a call to action for lasting change for all brain tumour patients. She asked for all patients to benefit from “the latest and greatest science” and called to focus on “living well with cancer, not just dying from it”.

The Tessa Jowell Brain Cancer Mission Leadership team. Left to right, Professor Richard Gilbertson (Li Ka Shing Chair and Head of Oncology, University of Cambridge and Director of the CRUK Cambridge Centre). Tessa’s daughter Jess Mills serves as the TJBCM’s co-founder and special advisor. She ensures that the TJBCM’s objectives meet her mother’s vision. Dr Nicky Huskens is the Director of the TJBCM. She oversees each of the Strategic Programmes and is responsible for running the mission day to day. Lord O’Shaughnessy (not pictured) is a Patron and strategic advisor of the TJBCM.

Inspired by the successes in the field of muscular dystrophy, where muscle wasting services collectively raised treatment and care standards through centres of excellence, the Tessa Jowell Brain Cancer Mission  (TJBCM) launched its ‘Tessa Jowell Centre of Excellence’ strategic programme in November 2019. And from today, hospitals can apply to become a Tessa Jowell Centre of Excellence.The Centres will provide an academic and clinical ‘home’ for the Mission’s Strategic Programmes embedded in the heart of the NHS and aligned Academic Health Science Centres and ensure patients receive the latest and greatest evidence-based care.

The Tessa Jowell Brain Cancer Mission is a convening body, chaired by Professor Richard Gilbertson and supported by brainstrust, ACT for Cancer, Brain Tumour Research, Brain Tumour Support, Cancer Research UK, the Eliminate Cancer Initiative, the NCRI (National Cancer Research Institute), the NIHR (the National Institute for Health Research), NHS England, the Brain Tumour Charity and the University of Cambridge.

Will Jones CEO of brainstrust sits on the Joint Strategy board for the mission and the people brainstrust is here to help are represented by brainstrust across the Mission’s Strategic Programmes. These programmes are looking at driving progress for people with a brain tumour in brain tumour treatment and trials; improving specialised training for doctors; creating new roads in research; embracing new technology and data. The Tessa Jowell Centres, as they come online, are a critical step towards giving these programmes a home.

Applying to be a Centre of Excellence

All UK neuro-centres will receive an invitation to apply for assessment on the 26th of October and will be given eight weeks to complete the application ahead of the submission deadline on the 19th of December.  The applications will be shared with the review committee early January and the committee will convene the first week of February to decide on which centres will be likely to receive designation. The first round of Tessa Jowell Centres of Excellence will be announced in the week commencing March 1st.

A formal invitation to apply will be extended to all UK neuro-oncology centres on the 26th of October 2020. Centres that wish to apply and who have not received an invitation should contact Dr. Nicky Huskens as soon as possible to obtain the information pack (

You can read more about the programme, here on the Tessa Jowell Brain Cancer Mission website

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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:


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 tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites


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.


Not cancerousNon-malignant tumours may grow larger but do not spread to other parts of the body.


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

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here: