In Fundraising

 

One of our lovely supporters, Sharon Springall decided to mark the end of summer a few months back by putting on a fundraising Music Festival to raise money for our support service.

Sharon, from Essex, was diagnosed with a left cavernous sinus meningioma in 2010 following cerebral oedema and required six months off of work to recover.

“The shock and horror of the diagnosis had a huge impact on me and my family, so I went into denial and threw myself into my work, only to suffer further on August 2012 when I collapsed at work and following a visit to A&E by ambulance, I was diagnosed with aseptic meningitis secondary to the meningioma. I was seriously ill for a further eight months and the effect that this had on me mentally and physically has been life changing. I had to concede and give up my job a year later following an unsuccessful phased return to work, as I was unable to cope mentally & physically. I have since then been diagnosed with chronic pain, chronic fatigue and now suffer from spondylosis potentially due to nerve damage caused by the inflammation of the meninges”

 

“Since leaving work, I have struggled to ‘rest’ and also come to terms with how this has changed my life. I found myself feeling lonely at times and felt that I needed to ‘offload’ on someone. I decided to organise a charity event, and following a very successful day found myself doing another. It was during this time that I discovered brainstrust. I sent an email to and within days had received a fantastic response. Immediately I felt as though I had found another friend. I found I was able to put all my feelings, whether it be sadness, frustration or anger into an email and feel as though someone was happy to listen and totally understood my illness and its effects. I was sent my ‘brain box’ which I found a fantastic help, and also found my husband reading the book and information leaflets, as he has found the whole thing quite hard to deal with.”

 

It was after being supported by brainstrust that Sharon decided to give something back. And she went all out.

 

“Following organising quite successful charity events, our local pub offered to support me in organising another. It was then I made the decision that I wanted to fundraise for brainstrust. I wanted to do something to support the charity, as they have and are supporting many people who have been diagnosed with a brain tumour and if it can help someone like me in feeling that I do have someone to speak to and turn to if needed then they deserve our support.

 

 

“I decided to organise a ‘Summer Music Festival’ marking the end of summer and the last bank holiday as a theme. In conjunction with the pub, we organised 7 bands/singers throughout the day. I then introduced the ‘summer’ theme with decorations and lights, organised a graphic designer for the poster and advertising and secured the free printing of the posters. I then visited as many local businesses in the village requesting their support by offering something as a raffle prize. Keeping to my theme, I also set up a small cocktail bar in the patio area and sold ‘Mojitos’ and ‘Sol Sunset Crush’ along with watermelons infused with vodka, maraschino cherries soaked in Amaretto and dipped in chocolate, and strawberries with tequila and triple sec jelly served with limes. I also added an inflatable limbo set and giant playing cards to add a bit of fun.”

“I am happy to say it was a hugely successful day and it was great fun seeing it all come together. I worked hard to pull off the day and am delighted that so many people attended and embraced the theme. We managed to raise awareness of brain tumours, so was worth it just for that reason. I spent a lot of time talking to people about brainstrust and the work they do and I felt that I could engage with them more when I spoke to them as someone who is living with a brain tumour.”

In total, Sharon’s Musical Festival went on to raise an incredible £807 for our support service. And she’s not stopping there.

 

“I am now already planning my next event for 2016, a football tournament in support of brainstrust- dates yet to be set as I am up against the Euro 2016 finals! In the meantime I am still working on a sponsored event called ‘Ditch the Device’ something me and my niece have thought up and are hoping to engage the local schools into, participating now they are all back to school.”

 

“A huge thank you to brainstrust for the amazing work you do and all the support you give to so many who find themselves devastated by the news that they have a brain tumour, and in raising awareness of this awful disease.”

 

It’s us who would like to thank you Sharon. You’re amazing. 
Your money will help us support more people to feel less alone in the face of a terrifying brain tumour diagnosis. 

 

If you, like Sharon, would like to do something big for brainstrust, so that we can support more people in the UK to feel less afraid, less alone and more in control in the face of a terrifying brain tumour diagnosis, then we’ll help you with it every step of the way. Visit our team brainstrust page to pick one of our challenges or simply get in touch with tessa@brainstrust.org.uk if you’d like to plan one of your own.

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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