In Campaign News

The mornings are getting lighter, and the Summer’s plants are stretching their little green arms out of the ground. March means that Spring is close. It also means that National Brain Tumour Awareness Month is upon us.

This is a time of hope. At brainstrust we celebrate in March. We try not to dwell on the grim facts and stats that confront us and brain cancer patients.

Instead, in March we like to show how we act on these figures and statements. We share with you what we’re up to, and launch exciting new ideas that are carefully designed to help people with a brain tumour. You can see this year’s ideas on this very page.

In short, we work slightly differently: We present our patients and supporters with opportunities, not unhappy statements. Be it new support initiatives to use, or projects to fundraise for; every March we offer you something to get behind.

We hope that you’ll see March like we do. We know that brain tumours are still an unsolved problem, but we’re working hard to sort them. And we are making steps forward. Help us celebrate this progress. Spread the word about our work. And spend a little time understanding the difficult journey that people with a brain tumour diagnosis have to face.

So please, start March 2011 here. Read about what we’re up to, click on some links, and take part in National Brain Tumour Awareness Month by taking 5 minutes to understand and share with your friends and family the progress that we’re making; the progess that you’re helping us make.

Thank you,

Helen, and all at brainstrust x

 

 

NEW brainstrust brain tumour support tools in 2011

 

This year we’ve all been working very hard, and have not one, but THREE exciting new support initiatives to launch over the coming month.

 

the brainstrust

the brain tumour hub

Super secret special project for children

brainstrust events in Brain Tumour Awareness Month 2011

 

‘the brainstrust’

Firstly we’ve shared with you already, the revolutionary concept of the ‘the brainstrust‘: Borne of our ethos that none of us is as smart as all of us, ‘the brainstrust’ is a team of committed volunteers who will guide our efforts to help people with a brain tumour, making sure that the funds that you work so hard to raise are used as effectively as possible to help brainstrust’s patients and carers.

In short, more than ever before, we are going to make sure brain tumour patient and carer experience sits at the very centre of what we do.

‘the brainstrust‘ left to right, Andrew McEvoy – Consultant Neurosurgeon and brainstrust Patron, Adrian Heppenstall – brainstrust patient, David – Adrian’s carer, Lady Jane Pickard – carer and fundraiser for brainstrust and the George Pickard Fellowship, Willie Stewart – Consultant Neuropathologist, Meg Jones – brainstrust trustee and icon, Hannah Richardson – carer, Will Jones brainstrust development manager, Helen Bulbeck – brainstrust Director and Jacqui Cowen – brainstrust fundraiser.

 

The Brain Tumour Hub

Next up, we’ve put live the Brain Tumour Hub. This is a VERY exciting and much needed online support tool which puts previously fragmented brain tumour support information in one, easy to navigate place.

Already we’ve had some fantastic feedback from brain tumour charities, healthcare professionals, and of course, brainstrust patients and carers, and the brain tumour hub is growing every day!

Why not try it out for yourself? Click here to visit the Brain Tumour Hub and see what brain tumour support is available near you.

Exciting new brain tumour support project for children

Later this month we’ll be announcing our third exciting support initiative that we’re launching to celebrate Brain Tumour Awareness Month.

All we can say for now is it contains MONSTERS and ELEPHANTS, it has the full endorsement of a FANTASTIC celebrity, and it has been made especially for the children and parents that we’re supporting in their battle against brain tumours and brain cancer…

… SO WATCH THIS SPACE!

Take part in Brain Tumour Awareness Month 2011

Whilst all of 3 of these exciting initiatives will be up and running for the middle of March, we’ll be launching the projects ‘officially’ at events in Wales and London that are free to attend and are open to EVERYONE.

The Wales event is on the 22nd March in Swansea, from 7pm. RSVP to this free event by calling us on 01983 292405, or emailing helen@brainstrust.org.uk – we’d love it if you could join us.

The London event takes place on the 29th March at the Dartmouth Castle in Hammersmith. You can RSVP to this event by clicking here, or by calling 01983 292405, and again, we’d love to see you.

Also on the 29th March, will be a mass lobby in London – please give us a call on 01983 292405 if you’d like more information on this.

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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