In Charity News

You’re tired of being asked questions about what it’s like living with a brain tumour and not seeing any real change or improvement afterwards. We call this ‘weighing the pig’; it keeps being weighed. Now it’s time for change.

After years of listening to you, the people that need us, and reviewing the journey that you face following a diagnosis, we’ve been able to pinpoint changes that need to be made during your care. Changes that will improve your quality of life.

You’ve told us that lack of information and support during recovery, for instance, is a real issue. So we’ve focused on improving the delivery of neuro-rehabilitation in order to address this. Our recent publication Quality of life: what the brain cancer community needs outlines the current gaps in neuro-rehabilitation and proposes changes that will ensure you’re better informed about the progression of the disease and about what rehabilitation options are available/what their purpose is.

Asking you to share your experiences has been a vital process. The interaction within the community that we’ve built together has not only helped us identify the specific problems that need changing, it has also helped you have greater understanding of the challenges that you face.

The helpful and supportive sharing within the community is essential, but we know it’s not enough.

You need specific resources that will enable you to be more resilient when faced with challenges of recovery and personality change and it’s time you had them.

You’ve helped us to identify what’s needed and we’re, as always, working on meeting your needs. You’ve told us for example that fatigue is a big challenge. You’ve told us that you want to be more informed about personality change. And you’ve told us that you want to have better conversations with your healthcare team. We’re developing and delivering additional resources that address these challenges, alongside the ones that have always helped you feel less alone and less affraid on this journey. The resources will include helpful information which will enable you to cope with the specific day to day challenges such as fatigue and personality change, workshops that build resilience and put you back in control.  We’re working with leading clinicians to implement guidelines at a strategic level. And on a one to one basis, brainstrust will continue to support its community to build resilience through coaching.

We know that you’re desperate for more information about what to expect when living with a brain tumour. We also know that you need more understanding about what could happen in the time ahead, so that you can be proactive and not reactive.  And, we know too that the current lack of information is having devastating effects upon your quality of life.

 

Remember, we’re always here.

It is important that we work together to fill in the current gaps in treatment. If you’re encountering a problem following diagnosis then please share it immediately and be specific about what you need.

Ask yourself this question- ‘what is it that I am struggling with the most?’ Once you have an answer, you’ll find it easy to define what is needed.

Now, be proactive- You’ve identified the problem, don’t try and fix it yourself. Share it with us and share it with a health care professional; together we can help fix it.

Start to take control of your situation. More control equals better outcomes.

And remember, we’re here to help 24/7. hello@brainstrust.org.uk

Visit ‘Quality of Life’ and ‘Clinical Research’– new sections of our campaigning page that we launched today  in order to understand why our commitment to putting the needs of patients first is so important. Together we’re putting the world right, the right way. 

 

To download our new report, click HERE. 

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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