In Fundraising, Patient story

In July of this year, Steven and a group of trusty team mates cycled 140 miles in 1 day in their epic ‘Tour de Barnsley à Beachampton’ fundraiser for brainstrust. Steve and his supporters have raised over £2,300 for brainstrust so far – an incredible total that will help fund out vital work supporting people affected by a brain tumour to live their best life possible. In this article, Steve shares more about why he chose to raise money for brainstrust and how the challenge went.

Why I’m fundraising for brainstrust

14 June 2019 was the day that changed my life. I was a keen runner, cyclist and swimmer and it was during a race that out of the blue I had my first seizure. One minute I was out running, next minute I had a seizure and was rushed to hospital only to be told I had a brain tumour. When you get news like that your world collapses into a blackhole and sucks in everyone around you. Like many people diagnosed with a brain tumour, you think your life will never be “normal” again.

I had over a year of treatment including surgery, radiotherapy and chemotherapy. I tried to be as active as possible throughout this time and the recovery period that followed, but it was hard.

I know I am one of the lucky ones and not everyone who is diagnosed with a brain tumour has a happy ending, but it was a long time before I knew this to be the case.

During the tough times my wife Annette got in touch with brainstrust and they sent us a brain box and also arranged a meetup with other members of the club that nobody wants to be a member of. It was at this meetup I saw that life could be normal again.

Role on 3 years, I’ve got the all the clear, my seizures are under control, I have been driving for the past 3 month and my fitness has returned.

Tour de Barnsley à Beachampton

I love running and cycling, but without a challenge I get a bit lazy. This is how the “Tour de Barnsley à Beachampton” came about. It took months of planning. I rode bits and pieces of the whole route several time before I was happy with the route. I wanted keep to small roads when possible without going miles out of our way.

I wanted to give something back to the charity that made me believe that there’s light at the end of the tunnel. I love a challenge and I wondered if I could bike from Barnsley in south Yorkshire, my wife’s hometown and where her mum still lives, to Beachampton near Milton Keynes where we both live. My theory is the bigger the challenge, and the more friends I could get involved, the more money I could raise. As well as the friends that completed the challenge with me, I trained with other friends that couldn’t make it to main ride and my thanks goes out to them too, they too helped to spread the message.

We all had setbacks during the training with injuries and catching colds etc – but we made it. The whole them are so happy to complete the challenge, we had such a fun day and to get together with best friends that were always with me during the dark times of my diagnosis was the best thing ever.

I am “normal” again, but with a much better appreciation of life and friends.

 

We’d like to say a huge thank  you to Steven and everyone who trained with him, rode with him and supported him along the way. The money raised will help us ensure the people facing a brain tumour diagnosis and their loved ones are supported to feel connected, in control and able to make the best decisions for them. If you feel inspired by Steven’s story and would like to fundraise for brainstrust there’s plenty of inspiration and support to be found on our ‘do you own thing’ page. 

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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