In Fundraising, Fundraising News

Group of cyclists from Morgan Lovell fundraise for brainstrust. Image shows team of 4 men in cycling gear, they stand arm in arm in front of their bikes smiling.

On 28 May 2023 the Morgan Lovell Wheelers took on the RideLondon-Essex 100 in support of brainstrust and the brain tumour community. Headed up by Paul Dare, the team donned their Lycra and took on this amazing challenge in memory of Paul’s brother Dr Theo Dare, who sadly died of a Glioblastoma in August 2022. In this article, we share Paul’s reflections on Theo’s life and legacy and the significance of Morgan Lovell fundraising for brainstrust in his honour.

 

In memory of Theo Dare

In August of 2022, the Dare family said a final farewell to a much-loved father, son, brother and uncle, Dr Theo Dare.

“As a new-born baby Theo brought with him a beautiful smile, blue eyes and an unbelievably calm temperament, something he became well known and loved for. As he grew, he came to realise his increasing intelligence which eventually earned him the title of Dr and a PHD in Biomedical science. He worked and excelled at GSK, the pharmaceutical company where he worked for 26 years. Recently promoted to an associate director and a figurehead in the business, he was responsible for organising annual charity events and community days, which were attended by hundreds of people and raised a vast amount of funds.

Theo was a keen sportsman and played near enough every sport from tennis, badminton, pool and judo, the list was endless. But his sport of choice was football. A super striker, he was once scouted for Wimbledon FC, but he refused the opportunity to focus on his studies.

At the end of March 2022, Theo was diagnosed with a Glioblastoma, the most aggressive form of brain cancer, and on 20 August 2022 Theo peacefully said goodbye to this world and transferred to a world of love, peace, happiness and probably lots of football. For friends and family, he lit a fire of love, love that will never be extinguished or forgotten.”

 

Riding for brainstrust

Selfie of the Morgan Lovell team on their ride for brainstrust. They are smiling in front of Buckingham palace with their bikes.Morgan Lovell supports employees whose families may have suffered unfortunate circumstances by raising money for their chosen charity, and this year Morgan Lovell are fundraising in honour Dr Theo Dare. Raising money in memory of Theo, the Morgan Lovell Wheelers, formed of Paul Dare, Nathan Wroughton, Giles Dooley and Richard Howard, took on the 100-mile bike ride challenge from London to Essex.

Paul said of the challenge:

“The Ride 100 Essex was a fantastic challenge, although the thought of sitting on my saddle for more than 5 hours had been playing on my mind during my training. My motivation for the ride came from deep within with the feeling that my brother, Theo was spurring me on with every revolution. Losing Theo to an aggressive brain tumour came as a shock to the whole family as he was a fit and young man who had two young and wonderful kids of his own.  I really wanted to raise awareness of this condition and also to let other people know that there is support was available for families going through such tough times.

The ride itself started well and the Morgan Lovell Wheelers, who helped raise over £2,500 for the brainstrust charity, encouraged each other to hit each 25-mile checkpoint. The added cheering and jeering by the bystanders and cheerleaders along the route gave us all the much-needed boost towards the end of the ride to help us complete the ride.”

So far the team have raised over £2,500 for brainstrust. This amazing fundraising total will help fund our vital support service, allowing us to be there for people every step along their brain tumour journey. We’d like to say a huge thank you to Paul, the Morgan Lovell Wheelers and everyone at Morgan Lovell for supporting brainstrust – your generosity and passion keeps our mission alive.

You can find out more about the impact of our work here. If you or someone you love has a Glioblastoma and you would like support, visit our GBM hub.

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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