In Charity News

This month we’re 6! That’s not very old. But we definitely act our shoe size (11) not our age.

So where has youthful enthusiasm married with your unfaltering support got us in 6 years? A long way.

We’re now helping over 800 brain tumour patients and carers directly with our 24/7 phone and email support, with tens of thousands more visitors to the brain tumour hub and the support pages here at www.brainstrust.org.uk. We’ve a growing community, on and offline, who feel in control, and confident that they are working to the best outcome for their situation.

Now it’s easy for us to talk about the ideas and services we’ve got off the ground over the past few years, but what we should really talk about is what these services have achieved.

Phonelines, brain boxes, booklets, websites – they’re all just tools. Yes we’re chuffed about them, but the ‘product’ that we’re most proud of? Well that’d be that intangible feeling of being in control. The feeling that the relationship between clinician and patient is equal. The confidence that you are working towards the best outcome, and that you have accessed the best services and have been fully involved in every decision along the way. And who better to articulate this than the people that we’re really here for. Our patients and their carers. Here’s what just a handful of these people have said over the past couple of months:

brainstrust brain tumour support - in the words of others

 

And we couldn’t have done this without YOU!

Thank you so much for helping us achieve this. We’re still very much at the beginning of our journey with brainstrust, but we’ve got some momentum, some big ideas, some ambitious goals, and a range of useful services that we know work really well.

We believe that with your continued support and some more hard work from us, we can help every brain tumour patient and carer that’s out there to take control of their situation and be confident that they’re working towards the best outcome for their situation. People will always be scared when they’re diagnosed with a brain tumour, there’s no avoiding that. But what we want is for everyone to be confident, and in control so that they can focus on the important things.

Get involved this year

80p in every £1 that we raise at brainstrust goes directly towards helping brain tumour patients, with the remaining 20p on raising more funds – a virtuous circle where you know that everything you do will make a real difference for people that need it. So please, consider getting involved this year. There is still plenty of opportunity to support our work. Here are just some of the upcoming events:

Summer Serenade 2012 – It’s back! Now a staple in the brainstrust calendar, this fundraiser for our brain tumour patients and their carers is guaranteed to be a fantastic event whatever the weather, and over the years it has raised thousands for our work.

Virgin Active London Triathlon – Join team brainstrust at the 2012 London Triathlon! A great opportunity to swim, cycle and run for a great cause and at one of the most well organised events in the UK.

Run to the Beat – A popular half marathon around central London to live music. This is the second year that team brainstrust will be at Run to the Beat, powered by Nike + ‘officially’ – how can we not be with the promise of closed roads, great music and a fab half marathon route through central London!

Great South Run – Join team brainstrust and 30,000 ‘lesser’ runners on a fast, flat course through Southsea, Portsmouth and see Britain’s naval heritage, including HMS Victory and HMS Warrior 1860. This a great race that team brainstrust has attend for the past 2 years. No wonder really as it is Europe’s leading 10 mile road race.

Volunteering opportunities – we know that not everyone has the inclination or ability to take part in sporting event to support our work. We also have tons of other ways for you to help without having to raise a penny. Click here to find out more about our volunteering opportunities.

If you have your own fundraising idea, then why not get in touch? Give us a tinkle on 01983 292405 or email hello@brainstrust.org.uk

And finally…

Now We Are Six – A.A. Milne

When I was one I had just begun
When I was two I was nearly new

When I was three I was hardly me
When I was four I was not much more

When I was five I was just alive
But now I am six, I’m as clever as clever;

So I think I’ll be six now for ever and ever.

 

brainstrust and SDBTT: More Research. More Support.Charity News
Get involved in brain tumour reasearchResearch 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