In Do your own thing, Fundraising News

Stephen and Rob’s 24 Hour Challenge

This Good Friday, Stephen Miller and his friend, Rob Eagles, will be taking on a challenge of their own creation: Hot Cross Run! It’s a 24 hour endurance challenge which will see them running laps of Sefton Park in Liverpool – a 2.2 mile circuit they’ll be repeating from sunrise to sunset, and beyond.

Together, the pair will be raising funds in support of brainstrust and Molly Olly’s Wishes – two causes very close to their hearts.

Remembering Mum

Stephen has been a loyal supporter of brainstrust for many years, and his latest challenge follows a long list of incredible accomplishments. At 43, Stephen’s ability only goes from strength to strength, and his commitment to supporting the brain tumour community is unwavering. Below, Stephen shares why he began running and everything he’s achieved so far:

I lost my mum to a GBM in 2013 and have since raised funds several times for brainstrust. The first time being the first marathon I ran at Chester in 2016. Since then, I have taken part in plenty of events of all distances, and over the last few years I have started running ultra marathons, defined as anything longer than marathon distance. In 2019 I ran 50 and 100 mile races and raised a considerable amount for brainstrust thanks to the generosity of friends, family and colleagues.

Hot Cross Run

Following the Covid-19 outbreak, 2020 saw the cancellation of all major challenge events here in the UK. As a seasoned runner and keen fundraiser, Stephen’s plans for the year were no long possible. Determined to get back on track, Stephen and Rob decided to take matters into their own hands and began organising Hot Cross Run. In January, Stephen reached out to brainstrust to share his ambitions for 2021.
Although I have a number of events planned for this year, it is obviously unclear at this stage as to whether they will take place. That’s why me and a friend decided to arrange our own. We have chosen to run laps of Sefton Park which, although it probably sounds horrendous, logistically makes sense as we can have food and kit in our cars and there is no chance of getting lost!

Up for the Challenge

A he explains below, Stephen’s love of running, paired with his passion to make a difference, fuels his motivation to continue reaching new personal milestones.
Since taking up running in 2015, it has become a big part of my life and something that I use to keep fit, clear my head, socialise with friends and give my wife and 2 young daughters some much deserved peace! I run the majority of events with a good friend of mine, Rob. The distances have become longer over the years which probably present more of a mental than physical test, something which I bizarrely enjoy the challenge of. All in all, I love running and enjoy having the motivation of raising funds for such a fabulous charity to get me to the end!
On Good Friday, Stephen will be joined by his friend Rob, who is running for Molly Olly’s Wishes, a charity supporting children with life threatening or life limiting illnesses, and their families, to help with their emotional wellbeing. The pair are inviting supporters to safely join them at Sefton Park from 9am as they take on this epic challenge.

Making a Difference

From his first marathon, to his now 24 hour endurance challenge, Stephen has raised an incredible £6,032.00 and counting! Because of his extraordinary fundraising efforts, 150 families have received a brainstrust brain box – our essential toolkit full of tailored and accredited resources specifically designed to give patients and carers the tools they need to thrive. The life-changing difference this makes simply wouldn’t be possible without the support we receive from people like Stephen. The impact it makes is described by one patient below:
“I received the brain box yesterday. I cried with happiness. It’s just what we needed – the booklets, information, tea and even hand cream. You have restored our faith in human nature.”
We’d like to wish Stephen and Rob the best of luck ahead of their Hot Cross Run event on 2nd April – it’s a challenge like no other, and we’re certain everyone will join us in cheering them on throughout the day! If you’d like to support their extraordinary fundraising efforts, you can visit Stephen’s JustGiving page by clicking here, and Rob’s JustGiving page by clicking here.
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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