In Fundraising, Fundraising News

Winter wild swimming

When Seth, 7, died of a brain tumour earlier this year, friend of the family Greg decided to honour his memory by taking on a challenge. Greg pledged to go out open water swimming every day for 365 days with no wetsuit, inspired by Seth’s love of the beach.

Seth would have turned eight this December, the seventh month of Greg’s challenge in his memory. He’s raising funds for brainstrust because of the support they provided Seth’s family, as well as the 365 Legacy Fund.

He’s been relentlessly creative in his efforts to reach his fundraising target (£3,650). From swimming in gold hotpants for Childhood Cancer Awareness Month to organising an incredible raffle, and he’s now almost 70% of the way there!

With winter ahead the toughest few months are yet to come. Not just an impressive physical effort, the challenge has been emotional. When Greg gets in the water every day, he remembers Seth’s love of pirates and the beach, as well as the funny jokes and astute observations that he would make while they played games together. Greg is open and honest about the emotion of it all on his Instagram @greg365challenge.

Wild swimming in Devon

Seth passed away in May 2021, and he has inspired many people to take on challenges in his honour. Greg says: “He was a fighter and an amazing little human. Inspired by Seth, I’m now taking on another challenge of wild swimming for 365 consecutive days. No wet-suit, all weathers and conditions.”

And he’s certainly experienced all weathers so far! There’s been sunshine, rain, even storms, but nothing will stop him from completing this challenge.

“Living in Torbay, Devon I am lucky enough to be surrounded by an amazing coast and beaches, through this challenge I’ve swam and been to places I hadn’t explored before, the 365 challenge was also started locally in Brixham so everything just fell into place to take on this challenge. Seth also had a love of the beach, sea and pirates so after he passed I just had an overwhelming urge to take this on for him, even in the depths of winter going for a swim will be nothing compared to what Seth and his family went through during his treatment and I hope through this year long challenge I can raise funds and awareness for brainstrust, along with local community projects backed by the 365 legacy fund.”

“Keeping that spark of determination alive means that other people will benefit indirectly from our son’s short life”

For Seth’s mum, Sam, this determination to take on a tremendous challenge reminds her of her brave little boy.

Sam: “I think one of a parent’s greatest fears over losing a child, aside from the grief, is that their child, their world, will be forgotten or that people will be afraid to mention their name for fear of causing further hurt. But in fact, talking about Seth, sharing his story, his bravery and his absolute determination to live his life to the full helps us to feel that his short life wasn’t for nothing. We hope that his journey will inspire other people to keep going when times are tough and push people to achieve more than they think themselves capable of. Greg’s swim challenge is a part of this, his desire to support brainstrust in Seth’s memory, to keep that spark of determination alive means that other people will benefit indirectly from our son’s short life.”

Follow Greg’s challenge on Instagram @greg365challenge or help him reach his fundraising target by donating here: https://www.justgiving.com/crowdfunding/greg-kirkpatrick

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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