In Charity News

 This is a story all about making making sure brainstrust’s support reaches more people, and ensuring more top-notch brain tumour research happens. Must say we’re excited about this and pleased that we can finally share the exciting announcement with you. Here goes…

 

Working together: more research and more support.

brainstrust and the Samantha Dickson Brain Tumour Trust (SDBTT) have announced today that they are launching a new collaboration to help brain tumour patients, carers, clinicians and researchers.

The two charities, will work in partnership on certain projects to increase brain tumour research output and to accelerate the delivery of innovative brain tumour support services on a national level.

 

This new collaborative approach has been designed by brainstrust and SDBTT to better meet the needs of beneficiaries while also ensuring that the distinct work the two organisations undertake remains a clear priority.  

 

Already agreed is a programme of social meet-ups and information days for the brain tumour community and a commitment to direct fundraising efforts towards Association of Medical Research Charities (AMRC) approved projects that are currently underway with SDBTT.

 

Also on the collaboration agenda is the cross-promotion of all sources of brain tumour support and advice by both charities which will give an increased sense of guidance to visitors to both websites and all callers.

 

Practical & personal emotional and social support for more people

“From now on, the two charities will be working alongside each other but will remain as two separate entities. SDBTT will focus on brain tumour research and information, and brainstrust on growing the reach of its acclaimed brain tumour support service. This focus will allow each organisation to really excel at what they’re good at.” – Will Jones, brainstrust

 

At brainstrust we’re known for our very practical emotional and social support for brain tumour patients and their carers. We’ve supported thousands of people since we set out in 2006, and our main aim has always been to offer support and guidance from the point of diagnosis, and beyond, offering pragmatic, useful advice that will best help those that call. This service is provided through a unique and effective professionally accredited, personalised coaching model. And it works really well. In working with SDBTT we will be able to reach and really support many more brain tumour patients and carers. And with our shiny track record and enthusiasm, we can’t wait to take on the challenge.

 

SDBTT prides itself on providing information to those affected and has a commitment to top quality medical research. Its annual brain tumour research budget is now in excess of £1 million and is allocated through a rigorous, internationally recognised peer review process. The organisation is also making a significant impact with its Headsmart campaign which calls for earlier diagnosis of children with brain tumours. It makes a lot of sense for us to support SDBTT research projects because of their effectiveness to date, and also the rigorous peer review process. This means that we can be confident that every research penny we raise is spent in the best possible way.

 

From now on we will work together to achieve our goals in these areas. An approach supported by the Charities’ Commission who recently published research that shows that charities that collaborate are able to offer an improved service, can increase the reach of their services and can have a greater impact.

In short? Each organisation will be even more efficient, even more effective, and we will each be well placed to continue to grow.

A word from our Chair of Trustees

 

Philip Cuff, Chair of Trustees here at brainstrust is very clear on what this collaboration is going to provide,

“Action! This is an agreement of substance rooted in several shared commitments including a carers’ day on 17th October, a programme of cross-promotion for helplines and sources of information, patient information days and an even greater programme of Meet Ups. Ultimately this is about offering everyone that needs it the best, most up-to-date support and with the weight of two organisations behind it, this new relationship will do just that. We are thrilled to be working alongside our colleagues at SDBTT and look forward to continuing to make a difference in the lives of those affected by brain tumours.” – Philip Cuff, brainstrust.

 

Find out more

We’ve a lot planned over the coming months. As Philip says, this is an agreement of substance, so the detail had to come first. We’ve Meet Ups, Information Days, new literature, Carer Days and much much more planned. To find out more, or to support us in this new collaboration simply call us on 01983 292 405 or email hello@brainstrust.org.uk

 

To find our more about the Samantha Dickson Brain Tumour Trust, visit www.braintumourtrust.co.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