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Brainstrust brain tumour support - the snaggle tooth splatAt brainstrust we keep hearing the same scary statements about childhood brain cancer:

 

– brain cancer kills more children than any other illness
– brain tumours account for one quarter of childhood cancer
– brain tumours have overtaken leukaemia as the leading cause of cancer death in children.

Whilst finding a cure to brain tumours and brain cancer may yet be a little way off, we’ve decided to do a little something about helping with this problem NOW.

And that’s why we’ve published The Snaqgle Tooth Splat, an illustrated children’s story book, designed to explain to children who have just been diagnosed with brain cancer what a brain tumour is and how the doctors and their carers will fight it and provide brain tumour support.

 

The Snaggle Tooth Splat  book: Brain tumour support for children and parents

 

Meg and Julie Walters after recording the brainstrust BBC Radio 4 appeal to raise funds for brain tumour support and brain tumour treatmentOur director, founder, and head bottle washer, Helen Bulbeck, explains what we’re up against: “More and more parents of children with brain cancer are getting in touch to express their confusion at the diagnosis that their child has received, and also for advice on how to broach the diagnosis with their children. There is a general feeling of loss of control immediately after a diagnosis.

 

 The Snaggle Tooth Splat is designed to help here. It enables parents to educate their children about what they are going through, and explains what brainstrust and clinicians are doing to help them. The book can also be used to explain to children what a newly diagnosed parent may be going through.

The book has been written by Karen Boswell, illustrated by Jason Mortimer and sponsored by Learning Curve. The foreword is by actress, brainstrust supporter and star of the brainstrust BBC Radio 4 appeal, Julie Walters CBE.

 

The writer Karen Boswell and the illustrator Jason Mortimer, who donated their professional services free of charge, worked closely with health care professionals from the neuro-oncology field to ensure the book met its objectives as effectively as possible. We then tested the book with nurses, parent carers, and school audiences. Both the initiative and execution have been exceptionally well received.

 

Getting hold of The Snaggle Tooth Splat – our latest brain tumour support tool

 

Brainstrust brain tumour support - the snaggle tooth splat

The 28-page illustrated book will be distributed free of charge to all our new parent carers. It will either reach them as a mailing, or in brain boxes – our essential tool kit that is sent free of charge

 

It will also be distributed to paediatric neuro-oncology departments in hospitals throughout England, Scotland and Wales so that neuro-oncology nurses can share the book with parent carers.

 

If you’d like a copy of the Snaggle Tooth Splat, our latest brain tumour support tool, now, then please give us a call on 01983 292 405, or click here to email helen@brainstrust.org.uk

About the Snaggle Tooth Splat team

Karen Boswell, who has been writing children’s stories for ten years, was inspired by the adventures of her childhood companion, Monty, the purple monster. She identified similarities between Monty’s antics and the mischief that a brain tumour can play in a child’s head. Spurred on by the devastating statistics surrounding childhood brain cancer, Karen penned The Snaggle Tooth Splat.

 

Jason Mortimer is a design and advertising professional with a love for illustration. Once we asked him if he would like to be involved and had read the story, he knew it was something he really wanted to be a part of. Inspired by the words, he went off and created the colourful images which he hopes helps to get the message across.

brainstrust brain tumour support - the snaggle tooth splat

 

And our lovely sponsor…

 

Sponsor Learning Curve is committed to ‘Everyday great value parenting’ by providing products that offer quality, safe, innovative, educational and practical solutions to raising newborns through to early childhood. A long time supporter of Toy Trust, a charity that helps disadvantaged children, it was delighted to support the first publication of The Snaggle Tooth Splat.

If you’d like a copy of the Snaggle Tooth Splat, our latest brain tumour support tool, now, then please give us a call on 01983 292 405, or click here to email helen@brainstrust.org.uk

 

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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