brainstrust impact 2020Our impact – getting it right.

“Adding rigour to reporting beyond simply counting beneficiaries is an open goal for
charities. We owe it to all of our supporters to be doing an incredible job at communicating the difference our work makes.” –
Will Jones, Chief Executive, brainstrust

It is important you know what we have achieved, as well as where we might be  falling short. Storytelling and narrative have always been a cornerstone of our reporting, but we have been working hard in recent years to develop systems and processes that will make us best in field at sharing with you what you are helping us to achieve.

You can read headlines about our impact on this page, and download our latest impact report here.

What we look at.

We report on people’s progress against six indictors, all of which support the four priorities in our strategy. These six indicators are:

  • engagement with care and conditionbraintrust strategic priorities
  • reduced isolation
  • engagement with communities
  • creating control
  • feeling supported
  • feeling resourced

“I feel like I am part of a community and I feel comfortable and confident whenever I have needed to ask for help. I stopped feeling lonely and scared as I now know there is always someone there who will help. Having brainstrust has helped me to deal with my diagnosis and they helped me to cope and I will be forever grateful.” – Patient, Midlands, March 2019

Our impact in 2020

  • Our work continues to drive positive, holistic change in people’s well-being across six indicators, which closely reflect the challenges our community faces
  • On average, people progress just over one point, or 23% (1.16/5), across the six indicators having received support from brainstrust, showing sustained impact since last year. Initial and final scores indicate that people move from a place of difficulty to a place where things are more how they like it
  • Progress tracker scores in all six areas increase much more frequently than they decrease or stay the same. FUTURE FOCUS: while this is what we would expect to see, more work can be done to ensure even fewer people go backwards in their scores and more people transition from scoring the same to moving forward
  • We are having the most impact in tackling isolation and building communities for people with a brain tumour. Beneficiaries are reporting a 27% improvement (1.35/5) in feeling part of a community, and are 24% less alone (1.22/5)
  • Concurrently, feeling part of a community and on top of things are the areas where most people report increases in their score over time (73 and 70 of 94 respectively).

FUTURE FOCUS: where people report the least progress (18% or 0.93/5) is in feeling engaged with their clinical care. Out of all six indicators, this is also the one where the largest number of people (25 of 94) report no change in their score over time.

FUTURE FOCUS: the area where the most people (13 of 94) report a decrease in their score is in feeling supported. We know from feedback that this is because people are reporting on their feelings about their clinical care, which in turn affects engagement with our support.

our impact in 2020

How people changed with brainstrustour progress against our strategic priorities

How we made an impact

Our impact reports

Since we embarked on our new strategy, we began to publish impact reports annually to share our progress. You can download these here.

2019 impact report

Read our 2019 impact report


brainstrust impact 2020

Read our 2020 impact report

Our Trustees' Annual Report and Accounts

Thanks to you, we've helped thousands of people living with a brain tumour. You can read more about our progress here.

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 cancerousNon-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