In Fundraising News, Press Releases

This November, 24 fundraising superstars took on brainstrust’s brand new Run, Row, Ride challenge to complete 30 miles in 30 days, collectively raising nearly £5,000.00!

They may have signed up alone, but they came together for the same reason; to help support the 30 people every day in the UK who hear the life changing words ‘you have a brain tumour’.

Showing incredible determination and unwavering enthusiasm they smashed their targets and for some individuals, even rediscovered a love for being active and having a reason to train. For many, this was a very personal journey having themselves either received support from brainstrust or witnessed it’s impact on a loved one.

A few of our participants reflect below on their own experience with this challenge:

 

 

AMY (Pictured right) – “This time last year I discovered I had a brain tumour and within days I was facing a 6 hour op to remove it. I took on this challenge as I would never have thought I’d be able to do it just one year after my diagnosis. One of the many reasons I am where I am now is because of charities like brainstrust helping people like me by providing support and much needed information to help get through the dark times.  The challenge itself was great and the reason for doing it spurred me on to do as many miles as possible! I need a lot of willpower to get myself in the gym so this was the perfect excuse. ”

 

 

 

MARGARET (Pictured right) – ‘I am so pleased that I decided to take on this challenge, my confidence in my ability to complete a mile a day for 30 days has increased immeasurably. I smile constantly, feel six inches taller and my sponsorship over on my Just Giving page will hopefully mean that many more brain boxes will be available for those who need them’.

 

 

LAURA (Pictured left) – I lost my mum to an astrocytoma brain tumour in November 2015. She was diagnosed about 18 months earlier and had an operation, but she lost the use of her right side. She fought it and started walking again but it kept coming back. My sons lost their Nana far too young. I got my old mountain bike out of the garage and started cycling just to give me some head space and a bit of exercise. I got fitter and began cycling further so I bought myself a new gravel bike this summer. I wanted a cycling challenge to give me something to train for and I found run, row, ride!  I completed my ride on Nov 10th, I ended up doing 38 miles due to my dodgy map reading but I was home within daylight so all fine! I was really pleased with myself as it was the first time I had cycled so far, the furthest I had done before was about 25 miles years ago and before I had children! I need to find a new challenge for next year now! 

 

 

NATASHA – (Pictured right) – My mum was diagnosed with an inoperable brain tumour 5 years ago and it changed family life. brainstrust helped us as a family learn to cope and help each other, so when I saw this challenge I knew it was my chance to give something back so they could continue helping others! It helped towards my D of E Bronze award, physical training which is Triathlon via air cadets too, so win, win!

 

 

SARAH – “When I saw that brainstrust were doing the 30 miles in 30 days challenge I thought it was a perfect time to take on my own challenge, not only to do it as part of my rehabilitation but to help raise funds to say Thank you for the fantastic support I have received and still do. I was so pleased to complete it only 12 months after my brain surgery and while some of the miles were tough they were all worth it”

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Margaret’s Run Row Ride Diary – Part 3Fundraising News
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‘Brainy Bunch’ took on 100km and raised £15,962Fundraising News

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