brainstrust patient and carer events

Our Thrive with brainstrust events will help you live better with a brain tumour. Below you can find information about upcoming webinars and meetups, both online and face-to-face. Filter by Patient and Carer events to see what’s happening this month. If you have any questions about our supportive events or would like to book a coaching session, please email hello@brainstrust.org.uk

August 29th, 2025

Colloid Cyst Community – August Online Meetup – Fri 29th 1.00pm

A colloid cyst diagnosis can feel isolating, and accessing reliable information or support isn’t always straightforward. This informal online gathering is a space to connect with others who truly understand. Whether you’re living with a cyst yourself or supporting someone who is, you’re warmly invited to join us. There’s no set agenda – just the […]

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September 2nd, 2025

Tea and a wee blether – Tues 2nd Sept 2.00pm

Grab a cuppa and join us for tea and a wee blether! This is your chance to meet, chat, and connect with others in our community. It’s for anyone affected by a brain tumour diagnosis, and just like our face-to-face meetups, it’s a warm, welcoming, and safe space for you. There’s no agenda – just […]

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September 3rd, 2025

Art Time – Weds 3rd Sept 10.30am

Come and join us for Art Time – whether you’re a seasoned artist or a complete novice, this is a gentle two-hour session to explore how painting can become a mindful, soothing activity. As you focus on the creative process, you may find stresses and worries begin to fade into the background.

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September 4th, 2025

Neuro Pilates for the brainstrust community (Online Session with Sammy) -Thurs 4th Sept 10.00am

Join us for a calm, welcoming online Neuro Pilates session designed especially for the brainstrust community. This gentle class focuses on supporting movement, posture, and balance through a specialist Pilates approach tailored to individuals living with neurological conditions — including brain tumours. Led by instructor Sammy Taylor, the session is suitable for all levels and offers a safe, […]

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September 4th, 2025

High Grade Brain Tumour Community – Thurs 4th Sept 13.00

This informal online group is for people living with a high grade (grade 3 or 4) brain tumour diagnosis – and their supporters. There’s no set agenda and no pressure to talk. Just join us for a relaxed space to connect with others who truly understand what you’re going through. Whether you feel like sharing […]

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September 5th, 2025

Neuroscience Informed Hypnotherapy- Fri 5th Sept 14.00

This session introduces the science of neuroplasticity and how hypnotherapy can ease discomfort, lift mood, and reduce anxiety. Designed for people living with brain tumours and those who care for them, the session also explores psycho-sensory techniques—simple tools you can use any time you feel overwhelmed or off-centre. This session is for people who are […]

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September 8th, 2025

Laser Interstitial Thermal Therapy (LITT) – Mon 8th Sept 17.00

Join Braintrust for a patient-focused webinar featuring leading neurosurgeon Prof. Ashkan, who will present an overview of Laser Interstitial Thermal Therapy (LITT). He will discuss the clinical indications for LITT, share his experience with the technique, and provide insights into its current use and availability within the UK. This session is ideal for patients and […]

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September 10th, 2025

Scanxiety – Hypnotherapy Workshop – Weds 10th Sept 14.00

That familiar wave of worry before a scan? You’re not alone. This session builds on what you’ve already learned and brings fresh focus to understanding and managing scanxiety. We’ll explore how fear affects your body and mind, and help you personalise strategies so you feel more in control of the processes and procedures before, during, […]

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September 11th, 2025

Know Your Options: Clinical Trials with Patient Navigators ( All Tumours) – Sept 11th 2.00pm

Clinical trials may offer options when conventional treatments fall short, but finding and understanding them isn’t easy. The process is often complex, time-sensitive, and filled with unfamiliar terms and decisions. That’s why brainstrust joined forces with myTomorrows: to empower individuals living with a brain tumour and their doctors with trusted information and personal guidance in […]

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September 11th, 2025

Living with a low grade Glioma – Thurs 11th Sept 16.00

Living with a low grade glioma brain tumour brings about its own challenges. Not only do you have to live with the symptoms that these tumours can bring (epilepsy has a high prevalence rate) but also the uncertain trajectory of a low grade glioma. By low grade we mean grade 2 tumours, and those that […]

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September 11th, 2025

Know Your Options: Clinical Trials with Patient Navigators ( All Tumours) -Thurs Sept 11th 14.00

Clinical trials may offer options when conventional treatments fall short, but finding and understanding them isn’t easy. The process is often complex, time-sensitive, and filled with unfamiliar terms and decisions. That’s why brainstrust joined forces with myTomorrows: to empower individuals living with a brain tumour and their doctors with trusted information and personal guidance in […]

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September 12th, 2025

Acoustic Neuroma (Vestibular Schwannoma) Group – Fri 12th Sept 13.00

Living with an acoustic neuroma can feel overwhelming at times, and it helps to talk to others who truly understand. This is a friendly, informal online space where you can connect, share experiences, or simply listen in. Whether you’re newly diagnosed or further along in your journey, you’re welcome.

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September 12th, 2025

London Meet Up – Fri 12th Sept 15.00

Join us at Pizza Express – London Euston Road for our much-awaited meet-up in Central London. There’s no agenda, it will be a lovely chance to meet and make connections with others going through a similar experience. This is open to anyone affected by a brain tumour diagnosis. Pizza Express on Euston road is a […]

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September 15th, 2025

Let’s Get Together in Brighton! – Mon15th Sept 14.00

Location – Louisa Martindale Building Eastern Road Brighton and Hove BN2 5BE We’d love to catch up with you in Brighton. Fiona and Andy are hosting this event so please come along to say hello. Everyone living with a brain tumour is welcome, whether you are a patient or a caregiver. This one is a bit different […]

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September 17th, 2025

While I wait – Hypnotherapy Workshop – Weds 17th Sept 14.00

Waiting is hard; the aim of this session is to make it easier. Whether you’re waiting for results, treatment, appointments or something else entirely, this session offers calming, brain-based techniques to keep you grounded and present by using the most contemporary techniques. You’ll learn how to bring clarity and calm into the unknown, using focus […]

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September 17th, 2025

AIR GLIO- a focus group for people living with Glioblastoma-Weds 17th Sept 2.00pm

The Beatson West of Scotland Cancer Centre wants to run a feasbility study that explores how serial MRI scans can be used to improve outcomes for patients who are have radiotherapy (RT) for a glioblastoma (GBM). A feasibility study tests whether the study is doable. It maybe that having serial MRI scans during RT could […]

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September 17th, 2025

brainstrust bereavement community meet up – Weds 17th Sept 19.00

The grieving process begins at the time of diagnosis. We know that a death caused by a brain tumour is different. Come and be less alone.    

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September 19th, 2025

Meningioma Matters – Fri 19th Sept 13.00

We know how hard it can be to live with a meningioma – whether you’re a patient or a caregiver. This space is for you. Join us for a gentle, open conversation with others who truly understand. Share how you’re getting on, talk about what you’re finding difficult, or just listen in. There’s no pressure […]

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September 24th, 2025

Calmness and Confidence Hypnotherapy Workshop – Weds 24th Sept 19.00

Open to anyone who’s taken part in the core sessions or is a regular at resets, this bonus hypnotherapy session helps you reconnect to your own strength and stability. It’s designed to fit flexibly for those who need it. This session is mostly evening. This session is for people who have attended brainstrust hypnotherapy sessions […]

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September 26th, 2025

Colloid Cyst Community – September Online Meetup Fri 26th Sept 13.00

A colloid cyst diagnosis can feel isolating, and accessing reliable information or support isn’t always straightforward. This informal online gathering is a space to connect with others who truly understand. Whether you’re living with a cyst yourself or supporting someone who is, you’re warmly invited to join us. There’s no set agenda – just the […]

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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 cancerousNon-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