In Fundraising, Fundraising News

Geoff doesn’t consider himself a runner, he considers himself a friend.

“I have a friend who told me she had a brain tumour. All the support she received just made me realise that I needed to help people get more support in whatever way I could.”

When Geoff’s friend was diagnosed with a brain tumour, she spoke to him about the support she had received from brainstrust. Feeling inspired, Geoff set himself a year-long series of challenges to raise funds in support of everyone who has heard the words, “You have a brain tumour.”

“Over the year the plan was to raise as much as possible.” In February, the day after Storm Dennis hit, Geoff completed his first Half Marathon. “This was way harder than I thought it would be. Two weeks later, I was in Brighton for another Half Marathon! The atmosphere there was amazing. Shortly after, I completed a 10k at RAF Shawbury where I crossed the finish line through hail and a snowstorm. Next came Shrewsbury 10k, then lockdown was enforced.”   

Adapting to lockdown

As April approached, the UK went into lockdown. Geoff, along with thousands of others, soon heard that he would no longer get to experience the thrill of being cheered on as he made his way to the finish line. Instead, the world looked very different. Geoff’s friend, and everyone affected by a brain tumour diagnosis, suddenly became even more vulnerable. At a time when all public fundraising stopped, our brain tumour community needed support more than ever. Geoff knew this, so he quickly adapted his challenges to continue his fantastic fundraising efforts.

“Since lockdown, of course all major events have been cancelled, but so many converted their event into a virtual one. I ran a virtual 100km event, several half marathons and half a dozen 10k races.” Alongside support from friends and family, Geoff has also been sponsored by three generous companies: TBSC, Gemini-Six and SAM Charter, helping to bring his fundraising total to over £1,300! Geoff now feels much closer to brainstrust and continues to be passionate about the community he is supporting. Geoff shared, “It has meant so much to me to be able see the support from brainstrust that my friend and others have received. I always feel there is more to raise and I have decided to continue to raise money for brainstrust in 2021.”

The virtual London Marathon

On Sunday, Geoff completed the virtual London Marathon. Of course, the event this year was far different to the one we all know and love. With a personalised route, Geoff pledged to complete the 26.2 mile challenge which he did with pride.
“I didn’t do too bad actually apart from running through a very large puddle nine times. It was ankle deep and very cold – this [picture] was the last loop and I had about 1.5 miles to go. I have been very hungry for the last few days but I should be on a run tonight.”

Looking to the future

Here at brainstrust, we are always overwhelmed by the kindness and generosity we receive from people like Geoff – people we couldn’t be without. It’s because of this that we were able to quickly adapt our services to ensure our vital support continued throughout the pandemic, and beyond. Looking ahead, Geoff shares his plans for the future as he sets his sights on achieving new personal goals, routed by his determination to strong, resilient and supportive of causes close to his heart.

“In October, I’m hoping to run in the Great South Run. Then I have a 25-hour ultramarathon endurance track race, just as the clocks turn back! In December, I have the Milton Keynes Half Marathon. It won’t be long before I start to train properly for Brighton Marathon in April 2021. I can’t wait to finish my first marathon, then I’ll re-start swimming lessons so I can take part in my first triathlon.”

As we cheer Geoff on into the New Year, we would like to thank him for everything he has done and continues to do in support of brainstrust and the brain tumour community.

Feeling inspired by Geoff? We’ve got a few places remaining in some 2021 races – check out our event calendar for more details. Email our Community Fundraiser, Sophie, if you want to chat about how you can support people with a brain tumour.

Run, Row, Ride might be the challenge for you! Click here to find out more.

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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