In Charity News

Marking the 1st anniversary of Ravi’s brain surgery, a stellar cast of internationally acclaimed musicians and celebrities have gathered in a charity music video to raise money for children with brain tumours. The single is raising vital funds to support the brain tumour community, and we are so grateful that Ravi has chosen to donate proceeds to brainstrust as a part of his dream.

Ravi’s story

Ravi and his sister Maya

Ravi and his sister Maya

Like many 7 year olds, Ravi Adelekan is a young boy with A Million Dreams. However, in September 2021 his dreams were interrupted by the news that he had a benign tumour in his brain stem. Following ten hours of surgery, Ravi started his journey to learn to walk and feed himself again. He was determined to return to his passions of playing tennis, football, music and maths as soon as possible, smiling and joking through each day.

The surgeons were not able to remove the whole tumour, and Ravi lives with its effects every day. He still lives his life to the maximum with bravery, fun and inspirational strength.

brainstrust and The Brain Tumour Charity have both had a huge impact on Ravi and provided invaluable support in his aftercare following the surgery. To mark the first anniversary of his operation, with the help of his Dad, Gbenga (Mercury Prize nominated Metronomy’s bass player) and introduced by the Director of The Greatest Showman, Michael Gracey and cast member Hugh Jackman, Ravi has gathered together world renowned celebrities and musicians to produce a music video and raise money for the two charities that are close to his heart.

“I love songs and music, and I think this song is a special song because it’s about your dreams coming true, just like I dream that having a brain tumour doesn’t mean you can do anything less than other people”  – Ravi

A Million Dreams

Ravi starring in his music video. Credits to Richard Boll.

The multi-talented Adelekan family (including Grammy Award-winning uncle Synematik) are producing and performing a version of the song A Million Dreams from The Greatest Showman. The song and video feature Ravi, his family and friends alongside global musicians and celebrities, including Coldplay, Bastille, Damon Albarn, Paloma Faith, Mary Berry, Metronomy, Leandro Trossard, Björn Ulvaeus (ABBA), Sarah Hunter, The Big Moon, De La Soul, Jake Jarman, Courtney Tulloch and Heather Watson who all contribute to Ravi’s Dream. The video aims to raise awareness of the impact of brain tumours and offers an insight into how funding can truly transform the recovery process of those affected. While we don’t know what the future holds for Ravi, his vision is clear: a future where tumours like his could be treated without the type of major surgery he went through. He would also love for the incredible medical care and support he received at King’s College London to be available everywhere.

You can watch Ravi’s music video here.

 

Helping make the world a better place for people with a brain tumour

Picture of Steph and Molly from brainstrust team standing at a brainstrust party at Ravi's dream launch party

Steph and Molly at Ravi’s launch party

We are so grateful that Ravi has chosen to support brainstrust with his charity single. On 17th November 2022, we were lucky enough to be invited to the launch of Ravi’s charity single. It was a privilege to be at the launch party, where we gave a speech on brainstrust, the work we do and how Ravi’s Dream is helping us make a difference. It was a wonderful evening filled with love, talent and inspiration, and we can’t wait for the world to listen to Ravi’s song.

“At brainstrust we’re all over the moon that Ravi and his family have chosen to support our community with their charity record. The money raised by Ravi’s charity record will make sure we are there for the people who need us. Every penny will allow us to be there for people feeling afraid and alone after a brain tumour diagnosis. We are incredibly grateful to Ravi and his family for their support, and to everyone who listens to this song for helping raise vital funds and awareness.” Steph Coffey Senior Fundraising Officer

If you would like to donate to Ravi’s dream, you can do so here. If you want to find out more about our impact and how this fundraising will help us make a difference, visit our impact page.

 

Accessing brainstrust support

If you or someone you love has been diagnosed with a brain tumour we are here for you, no matter what. Simply call 01983 292 405 or email hello@brainstrust.org.uk to speech to one of our dedicated support specialists.

There is also a whole host of information and resources on our website:

 

By signing up to our mailing list, you will receive all the latest news, events and resources straight to your inbox – helping make sure you are as well resourced and as informed as possible. 

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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