In Charity News, Press Releases

An update from brainstrust

We enter these uncertain times with our founding principles of people first, and community. We are aware of the vulnerable place that people living with a brain tumour are in. We are following government advice closely, and quickly. Our team have come together incredibly, pledging to each other to be fair, flexible, and prepared. Late last night we closed our offices indefinitely for the protection of those around us. But our team of 14 is already working from home offices across the UK. Our mission?  To stay fit and well so that we can be invaluable to our friends and families that need us, and invaluable to the people that so desperately need brainstrust’s help as they are advised to shut their doors to the outside world.

Now is a time for us to reach out, but in new ways. We are working tirelessly to ensure that people with a brain tumour and their loved ones are supported in these uncertain times.  We are cancelling all of our patient and caregiver events in public spaces, initially for 6 weeks, but we are opening our doors online even wider.

If you have any concerns about your health, coronavirus and cancer, talk to your clinical team or read the NHS advice here. You can read our joint statement with the other UK brain tumour charities here. and please, keep reading these updates and follow our social media updates as things unfold.

This is a new one for all of us, and we hope that you stay safe and well. We’re here if you need us, while we have the funds to be – your support when you are able will be more valuable than it has ever been before.

Our support won’t stop

“We know at brainstrust how important community is, ever more so in this climate when we are being asked to isolate. We know that when you are preparing for tough times it doesn’t mean closing the door – it means reaching out.”
Helen Bulbeck, ​director of services and co-founder of brainstrust

In light of our events being postponed, we have doubled down on our efforts to reach you online:

As of 17 March 2020: Due to government advice, we are cancelling all of our patient and caregiver events in public spaces, initially for 6 weeks, but we are opening our doors online even wider. In light of our events being postponed, we have doubled down on our efforts to reach you online:

  • We will be running virtual meetups and webinars covering topics we know are important to you – keep an eye on our social channels for updates.
  • Book a coaching call or drop your support specialist an email. Coaching can be vital in this time of uncertainty to help you navigate your ‘new’ normal. Click here to email Helen, Jane, Jodie, Carol or Khadijha.
  • We are regularly uploading new information onto our website for people with a brain tumour. Read our existing Know Hows, and look for new arrivals here. 
  • Our Facebook community has over 2,500 members and is a welcoming, confidential and supportive space that is thriving and full of relevant and useful conversations.

Fundraising and your support

We always put the well-being of our community of patients, caregivers and supporters first. Following government advice, we have been preparing for the inevitable event postponements as much as possible. As you are probably already aware a large number of immediate sports and challenge events have already been delayed.

If your fundraising challenge is postponed, it is vital that you don’t lose heart. Please continue your fundraising efforts when you are able to, events will be rearranged once the current situation is under control, giving you longer to reach and beat your fundraising goals. In times like these, our vulnerable community needs our support more than ever, so please continue to support us, so that we can support them.

This is a new situation for all of us, and we hope that you stay safe and well.  Tom Cowie, Head of Income, brainstrust

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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