In Fundraising

All throughout last month, Antony Evans and Ian Phillips, two of our incredible supporters, asked people to shave, donate and nominate for brain tumour support.



Why?

Five years ago Ian was diagnosed with a brain tumour and we’ve been supporting him since. So, the boys not only wanted drum up some funds for brainstrust so that we could support more people, but also wanted to communicate more awareness of the traumatic effect cancer has on its sufferers and families through a campaign more empathetic than those previous.

“We believe ‘Movember’ has maybe run its course, and promoting growing hair, which never actually happens in the treatment of cancer to our knowledge, is just a bit odd.  We’re not aware of patient’s symptoms, of any disease, feeling like they’ve had a bucket of iced water poured on their heads either!!!  We believe this is a far more empathetic and compassionate way of communicating the issues of chemotherapy treatment surrounding the condition that is cancer, a disease that Fig (Ian) continues to battle bravely”-  Antony Evans, Shavepril organiser

How?

Shavepril was in the style of other campaigns, like #NoMakeUpSelfie and #IceBucketChallenge, in the way it asked people to shave, donate and then nominate someone else to do the same. Shavepril was different though, because people knew from the outset what they’re donating to: the charity that helps people feel less afraid, less alone and more in control of a terrifying brain tumour diagnosis (that’s us!).

April 2nd: Shavepril begins

Who better to take the first brave shave than the two organisers themselves: Antony and Ian. On April 2nd, they headed down to Windsor Barbers and roped in Non Evans, a famous Welsh sportswoman, to do the honours of razor-ing off their hair. Here they are:

From then on, with incredible promotion from the boys, Shavepril took off faster than a razor through the hair. So many amazing people got involved and did something bold for brain tumour support, some who took their nominations seriously and went ahead and others with more personal reasons.

 

And it was the latter than inspired ‘the first lady of Shavepril’. Charlotte Ferris stepped up to the challenge in memory her auntie whom passed away from a brain tumour and mother in law who she lost to cancer. Charlotte’s shave alone raised £2000 for brainstrust, and inspired another brave lady to follow lead.  Indeed, shortly after Nicky Murrell joined the campaign in memory of the mother she sadly lost to a brain tumour and reminded others in the meantime why it was so important to get involved.

“Looking back, I remember being stunned that there seemed to be nothing that could be done other than to make her final months more comfortable…I remember feeling as though we left to get on with things – I know we weren’t entirely: the doctors and nurses and the various hospitals and clinics were incredibly caring and compassionate but we so needed someone to lean on, someone to ask those tricky questions of – what is going to be like? brainstrust now offers this and SO much more – it offers hope. I have chosen to do this now because it is right for me now. I am ready to make a stand, to be noticed and make people notice brainstrust and brain cancer”- Nicky Murrell 

It was absolutely amazing to watch this campaign grow, and see so many people do something huge to raise vital funds for brain tumour support. We’re pleased to announce that Shavepril raised over £7000. And that was mainly down to Antony and Ian for inspiring people every single day to get involved. And we mean every single day-  ‘Mow it off Monday’, ‘Trim it off Tuesday’, ‘Whip it off Wednesday’ ect…

Thank you boys. You are both legends. And also, a huge thank you to EVERYONE who took the incredibly brave shaving step, and those who donated and made Shavepril the brilliant month it was.

Rest assured that your funds and bald heads will go towards building our resources and support service so that we can help reach more people across the UK living with and beyond a terrifying brain tumour diagnosis.

To see all of amazing participants’ before and after shots from the campaign visit the Shavepril Facebook or Twitter Page. 

 

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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