In Brain News, Campaign News, Charity News

In November TV presenter Davina McCall shared with her social media following the news of her unexpected Colloid Cyst brain tumour diagnosis.

She told us how she was about to have treatment, that she was understandably nervous and she asked her followers not to worry. Davina shared her story to camera in a typically eloquent, brave, human and open way. This created a wave of goodwill and good wishes for Davina and it also drove a spike in media interest and attention in the diagnosis, its treatment, its prognosis and in the Charities that provide information and support for the Colloid Cyst community.

What was the impact?

November 2024 was our second busiest month on record in terms of new patients and carers – 157 people reached out to brainstrust directly for help for the first time. This direct help includes coaching, counselling and event attendance. This surpassed October, when we ran the annual Wear Grey campaign with its awareness and fundraising goals where we were able to help 127 new people.

Our website, www.brainstrust.org.uk, saw nearly 3 times the usual number of people looking for information about brain tumours. There was a dramatic increase in interest in Colloid Cyst information and also patient stories relating to Colloid Cyst diagnoses.

Humanity, hope and a practical outlook

Much focus is placed on the devastating mortality rates caused by malignant brain tumours. This often means people with a non-malignant diagnosis feel forgotten and overlooked. We have worked hard to provide a balanced service, for anyone with any brain tumour diagnosis and we know that mortality rates don’t help you at diagnosis – quite the opposite, they cause fear and anxiety. As such the media looked to brainstrust for expert comment with the BBC linking to our Colloid Cyst fact sheet in their coverage and comment in the Telegraph.

This was supported by people with a Colloid Cyst who have been looking to brainstrust for support – they shared their gratitude to Davina for growing awareness of the condition. Social media commentary tells us that people are relived to be ‘seen’ and to have the hidden impact of their diagnoses shared. We saw a significant and sustained increase in support group numbers.

The colloid cyst group was a big success today, so much support and a lot of new faces! There was of course mention of Davina and a lot of gratitude around growing awareness, and many many mentions of how much support they have got from brainstrust.

Ellie Baker – brainstrust Support Specialist

With relief, we have since heard from Davina that her operation was a success and she is working hard on recovery, which we know isn’t always straight forward.  Naturally we wish her all the best, and are hugely grateful that she has been able to raise awareness of Colloid Cyst, shining a light on the hidden practical challenges. Perhaps most importantly of all, she has helped near record numbers of people find the support they need on this journey.

Helen Bulbeck – brainstrust co-founder and Director of Services and Policy

The need for awareness

“Knowledge is Power” a recent report by the Patient Information Forum and Ipsos reveals that support and information is too hard to find. This is why awareness is vital for the work of charities like brainstrust. The report tells us that:

  • Half of adults in the UK are struggling to access trusted health information.
  • 1 in 10 adults in the UK have been affected by misinformation, rising to 1 in 5 for ethnic minorities.
  • 8 in 10 adults in the UK agree access to trusted health information would help them manage their health.
  • 1 in 6 adults in the UK say their views are not taken seriously by their health professional. This rises to 1 in 4 for ethnic minorities.
  • Only 1 in 10 adults with long term conditions in the UK are signposted to patient organisations, yet these are highly trusted by their users.
  • 2 in 3 adults in the UK state independent verification of health information would increase trust.

Check out the report here.

This is why we work hard to raise awareness, and are currently running a campaign to reach more people, sooner on their journey with our support, and to ensure people anywhere in the UK can get the help they need.

If you would like help following a brain tumour diagnosis, malignant or non-malignant, and no matter where you are on the journey then please get in touch. Email hello@brainstrust.org.uk or call today on 01983 292405. You can see access our upcoming events, including the Colloid Cyst support group here, on eventbrite.

Colloid Cyst
Colloid cyst group – Thurs 23rd Jan 1.00pmEvents, Patient & Carer Events
Hillsborough Castle 10k 2025Events, Fundraising Events

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