In Fundraising News

Maidstone Harriers support #TeamSeth

The power of community never fails to inspire us. When people come together united by a common cause, they can achieve extraordinary things. This is exactly what Maidstone Harriers set out to do when they launched their Virtual Run in support of #TeamSeth, and we’re incredibly grateful to be receiving their support.

In just six weeks, hundreds of people from across the country will join Maidstone Harriers to complete a 10k virtual race in support of seven year old Seth, and his family. To make it even more special, Maidstone Harriers have incorporated Seth’s love for all things pirates! Runners willing to embrace the theme are being asked to dress up on the day, sharing their pictures for #TeamSeth to enjoy. Those who cross the finish line will have the pleasure of receiving a bespoke medal designed by Seth himself. An inspired event for an inspiring little boy.

Seth’s Story

In 2017, just weeks after Seth’s fourth birthday, he was rushed to hospital where he was diagnosed with a cancerous and aggressive medulloblastoma brain tumour.

Seth’s mum, Sam, recently spoke about the journey they’ve been on, which she describes below.

“Following a blue light dash to hospital, Seth underwent a long operation which was completely successful in removing the whole tumour. Unfortunately, MRI scans showed signs of early metastasis to his spine. Seth underwent daily radiotherapy to his brain and spine, alongside chemotherapy.

Happily, in October 2018, end of treatment scans showed Seth now had no evidence of disease and he got to ring the end of treatment bell at the Royal Marsden surrounded by his friends and family.

Despite being physically really fit and well, unhappily recent scans have shown a new area of disease in his brain. Having been in talks with our oncologists and neurosurgeon, the way forward appears to be for Seth to undergo another operation to endoscopically try to remove as much of the tumour as possible. This will then be followed up by more chemotherapy.

Although we have a positive plan in place to try and fight the tumour, we’ve been told that realistically we now stand only a very small chance of a complete cure and that the best we can hope for is to give Seth a good quality of life and time to make memories with us, his parents, and his 3 older brothers. Whilst we know that the odds are highly stacked against us, we are determined to fight this with everything we’ve got and to make the most of every minute we get together as a family.”

Community spirit leads the way

When Seth was diagnosed in 2017, his mum, Sam, was a member of Maidstone Harriers. Ever since, the group have supported #TeamSeth and the family’s chosen charity, brainstrust. Lead event organiser, Catey Bowles, said:

“As a competitive club we naturally turned our thoughts towards a race! And so the Maidstone Harriers Charity 10k was born, and because of lockdown, we are doing it as a virtual run.

At Harriers, we all remember how devastating it was for the Dickenson’s to learn this awful news, and we’ve supported them for the last couple of years as they’ve traveled along the brain cancer journey that they didn’t want to be on. We’ve been inspired by their courage and we’ve cried for their despair.

Now, as we learnt that treatment is no longer working and little Seth has little time left, we’ve decided to do what we can to support the family’s chosen charity, brainstrust, the brain cancer people. So join us, as a show of solidarity by participating in our race, with the entire profits going to brainstrust.”

If you’d like to take on this epic virtual challenge, please visit Maidstone Harriers website to find out more.

new year new look
New year, new look – first, we are people.Charity News, Press Releases
2ee5a5b0 4593 4454 80e6 78311ae18a39 scaled
“Squeeze enjoyment out of every day” – Chris’ GBM journeyBrain News, Patient story, Press Releases

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