Coronavirus/COVID-19 and brain tumours #CoronaComms

Our support hasn’t stopped for Coronavirus, and we’re still here during this lockdown and beyond to support people with a brain tumour and their loved ones. This is our COVID-19 Hub where you can find relevant information about Coronavirus and brain tumours. If you have any questions, give us a call on 01983 292 405. Remember that your clinical team are still here for you during this time – if you are worried about anything, contact them.

Click here for the latest advice regarding the easing of lockdown.

We can’t meet face to face, but you can still connect to others and join brainstrust events online. Find our calendar of Virtual Meetups and Thrive webinars here.

Latest coronavirus news for people with a brain tumour

How we are staying updated so that our community has the latest information on COVID-19 and brain tumours?

There is a lot of noise generated by so many channels around COVID-19, some reliable, some not so. Our role is to make sure that the information we share about COVID-19 and brain tumours can be held up to scrutiny and is rigorous in production so that you know what you are hearing is trustworthy and evidenced.

How do we do this? Well, firstly through our connections with our peers, such as other cancer charities. We also have updates from NHS England. We have a weekly call with David Fitzgerald, Cancer Programme Director and Peter Johnson, National Clinical Director for Cancer. Our top level guidance comes from the best sources. Information about brain tumours and treatment during COVID 19 comes from professional bodies such as the Society of British Neurosurgeons and the Royal Colleges. We then absorb the information so that it is relevant to our community and meaningful to you as you live your lives.

We too are having some ‘on the ground’ feedback from you as you attend appointments. This is what makes it real so please keep sharing.

If you are uncertain about any information you read, always check with the Government NHS national guidance or contact us. Information is being updated on a daily basis. You can read the guidance from the International Brain Tumour Alliance (IBTA) here.

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Policy updates

We’re breaking down the latest news on how Coronavirus is impacting brain tumour treatment.

As shielding ends and lockdown eases, we’ve explored what this means for people with a brain tumour. Click here to read.

Children with a brain tumour and their families are suffering because of the Coronavirus pandemic. From isolation to anxiety, find out how COVID-19 has impacted life with a brain tumour for families, and read about support available through little brainstrust. Click here for the article.

Updated 23-02: The COVID-19 vaccine: we’ve answered your questions about the COVID-19 vaccine here.

We’ve joined together with the NHS and cancer charities to produce this advice for people with cancer on COVID-19. This guidance is regularly updated, most recently on June 4th. Read it here.

There has been a worrying drop in referrals of brain tumour patients to neurosurgical departments since lockdown. If you think you have a brain tumour, are worried about cancer, or have a brain tumour and are concerned by any changes, contact your GP. The NHS is still open. Read more here.

There is now updated NICE guidance for immunocompromised children during the COVID-19 pandemic. Click here to have a read.

Here we’ve summarised guidance from the Royal College of Radiologists about how COVID-19 may impact stereotactic radio surgery for people with a brain tumour. Read it here.

Your experiences

You have weathered storms before. However this crisis is affecting you – you’re not alone.

It is great that the Government and local council have identified me as being “highly vulnerable and at risk” and whilst I feel extremely grateful for this and that they are supporting me with regular texts, emails and calls to update me and ask if I need any additional help, this just serves as a constant reminder of my situation and why I am here…

The whole country is now facing a scary ‘new normal’ which has weirdly made me feel stronger as my own condition has paled into significance, and we are all getting through this surreal time together.

I’ve got a grade 3 oligodendroglioma and feel deeply sad that my precious time is jeopardised

I thought I had everything sorted and now feel like I am back to square one. My wife’s scan has been put back by 6 months and in the meantime she is really quite poorly. The thought of having to wait another 6 months is beyond words.

Things to help you through

Book a coaching call, or join us for a webinar or online Meetup. We’re here to help.

Our Thrive with brainstrust webinars will help you feel on top of things when living with a brain tumour. Hosted by expert guests or our knowledgeable support specialists, topics include Living Well with Fatigue, Managing Behaviour and Personality Change and Understanding Imaging.  Sign up for our events here.

So we can all stay connected, we’ve brought our Meetups online! Join a Meetup for everyone, or find a group that suits you – we’re hosting Virtual Meetups for Teens, for people with a GBM, those with a Meningioma and much more. Find a Virtual Meetup here.

Our Brain Tumour Know Hows are short, clear guides about different topics relevant to the brain tumour community. Explore the Know Hows here.

Brain tumours are already one of the most expensive cancers, and the pandemic is only heightening money worries for lots of people. We can’t give financial advice, but click here to see how we can help you cope with money worries.

The WHO have produced some guidance on how to stay physically active during self-quarantine. This guidance is intended for people in self-quarantine without any symptoms or diagnosis of acute respiratory illness.

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Keeping in touch

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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: