In Charity News

 

This is a time of the year when we set out to do as much as possible to raise awareness of brain cancer. Read on to find out more and to get involved.

Why do we have Brain Tumour Awareness Month?

brain cancer support - brain tumour awareness month
Well, we do everything we can to help the people that contact us for advice and support, and for these people, outcomes are often better,journeys easier to navigate and the whole brain cancer experience is ‘more straightforward’ (we’ll never say that it is a positive experience) unfortunately despite all the hard work, not a great deal has changed when it comes to the wider picture.

  • More children die of brain cancer than any other illness in the UK
  • More people under the age of 40 are dying from brain cancer than any other cancer  
  • Incidence of brain cancer is increasing 2% year on year 
  • Yet still research is desperately underfunded
  • And the pathway for patients being diagnosed with brain cancer is not always clear or direct 

Brain cancer is something that could affect any one of us, but by raising awareness, and upping the stakes in our battle against this devastating disease, we can, and will beat it.

What are we doing for Brain Tumour Awareness Month?

For starters, we’ve just published ‘ten top tips for brain tumour patients’.

These are based on the personal experiences of our icon Meg Jones and those of her carer, and mother, brainstrust director, Helen. We’ve reproduced these tips below, and also have a downloadable pdf that you can print out – why not share these with anyone you think might need them? Click here to download a pdf which you can use or pass on to someone who might need it.

brainstrust’s 10 top tips for coping with a brain cancer diagnosis:

1.  Breathe. Deeply and slowly.

2.  Find out as much as you can. Call us on 01983 292405 or email hq@brainstrust.org.uk for free support and advice.

3.  Ask for a brainstrust brain box

4.  Buy a colourful, bright notebook to capture your thoughts and questions.

5.  Go prepared to your consultations – write down your questions, how you are feeling, your  anxieties: they look so much smaller on paper.  And don’t be afraid to get a second or third opinion.

6.  Spoil yourself with small treats – a bar of chocolate, an extra ten minutes with the newspaper, switch off the alarm.

7.  Come to a brainstrust meet-up.  If there isn’t one near you, we will make one happen: www.meetup.com/brainstrust

8.  People want to know how they can help.  Be specific.  Suggest practical things that they can do.  This helps them, and then everyone is happy.

9.  Trust your instincts.  Most of the time they will lead you in the right direction.  Be persistent and focus on your inner strength.

10. Seek sunshine.  And smile.

Click here to download a pdf which you can use. Print it out and store somewhere easy to remember or pass on to someone who you think might need it. 

During the month, we will also be launching two very exciting support initiatives. The first being our programme of Meet ups, and the second, the brainstrust brain box. Click here for more information, and to attend the launches on the 16th March.

Join in – Brain Tumour Awareness Month Events

There’s lot’s going on throughout March, if you’d like to join in, then here are some of the highlights, with information on how to get involved and help brainstrust to take the lead against brain cancer:

7 March – Bath Half Marathon. Team brainstrust is running at this event. If you’d like to run with us to raise awareness of brain cancer, then drop Tessa an email – tessa@brainstrust.org.uk or call 07948 400329.
brainstrust meet up logo
16 March – The launch of brainstrust’s Meet ups. This is our fun, new and innovative approach to support which we will be piloting on the 16th March. Click here to find out more about the launch evening and to register for this unique programme of events.

16 March – The launch of brainstrust’s brain box. At the first Meet up, we shall be introducing our brain box: Another initiative to help brain tumour patients and their carers. It’s exciting stuff, so click here RSVP and make sure not to miss out!

running for charity - brain tumour awareness month21 March – Reading Half Marathon. Berkshire’s leading Half Marathon held annually in March, and this year, we’re there! If you’d like to support us at this event and raise awareness of brain cancer, then drop Tessa an email – tessa@brainstrust.org.uk or call now 07948 400329.

24-26 March – Society of British Neurological Surgeons Spring meeting 2010. Hosted by Addenbrookes Hospital, Cambridge. This high profile conference is a meeting for leading Neurological Surgeons and other members of the profession from the United Kingdom and Ireland. We shall be going to ensure we’re up to speed with what’s going on in the world of brain surgery and also as part of our Brain Tumour Awareness Month Activity. Click here to find out more and to visit www.sbns.org.uk

28 March – Wilmslow Half Marathon. If you’d like to support us at this event and raise awareness of brain cancer, then drop Tessa an email – tessa@brainstrust.org.uk or call now 07948 400329.

Inspiration ball - brain tumour awareness month31 March – The Inspiration Ball. This event marks the close of Brain Tumour Awareness Month, and has been organised to benefit brainstrust by Lisa Connell, Rent a Date for Charity and Lehmann Communications. Click here to book your tickets and to find out more about this glitzy evening.

Throughout the month, Brain Tumour Research (of which brainstrust is a member charity) is encouraging organisations, schools, colleges, even local churches and pubs to pick a date during March and hold a Wear a Hat day for brain tumours.  Perhaps pass a hat round so that everyone can donate a pound or two to Brain Tumour Research and help bring hope, rather than despair, to the thousands of people who are diagnosed with a brain tumour each year.

Do you have your own awareness raising idea or event in March? Then let us know! Call Tessa on 07948 400329 or email tessa@brainstrust.org.uk and we’ll help you get started.

 

Just been diagnosed with a brain tumour? Here are brainstrust’s top ten tips to cope in the immediate aftershockPress Releases
Say hello to the brainstrust ‘brain box’Charity News

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