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When you have a brain tumour, the excitement of the Christmas period can often be overbearing with the pressure to feel joyful, merry and bright. Below, Paula shares her experience of living with a brain tumour throughout the festive season, whilst we explore the support available through our 24/7 helpline, personalised coaching, Virtual Meetups and array of resources.

How support can help you when things get tough

As Paula told us, the hardest thing for her last Christmas – the first since her diagnosis – was “the feeling of sadness instead of excitement (which I have always felt – I love Christmas)”. A brain tumour diagnosis changes everything, and at times like Christmas when things are more intense, the differences can be highlighted. brainstrust’s support gives people somewhere to turn. Often we want to protect our families from the truth, so a brainstrust support specialist is someone you can be completely honest with. And through our tried and tested coaching methods, we’ll help you through it. We’ll be here round the clock this festive season, helping everybody affected by a brain tumour when things get tough.

You can give the gift of support this Christmas for £20, so we can be here to help as many people as possible through this devastating diagnosis. 

 

Strength through community

Through talking to the brain tumour community, you can better articulate your needs to the people around you at home. Someone at the Meetup might be going through exactly the same thing and be able to tell you how they overcame it. At Christmas especially, there are simple your community can help you face the obstacles your brain tumour has created.

Having a community that understands life with a brain tumour is crucial in helping you live the life you want to after diagnosis. Whilst we can’t run our usual Christmas face-to-face Meetups this year, we’re still keeping people connected through our online events. If  you’d like to take some time away and speak to people who know what you’re going through, check them out here.

Our Coping at Christmas webinar is for anyone feeling overwhelmed by Christmas – join us on 16 December 2020 for an ideas exchange in a safe space. 

Paula recalls how she was not able to deliver her Christmas presents as usual because after her diagnosis she had her driving license taken away. Why not ask your loved ones to act as Santa on your behalf and do the deliveries for you! You can FaceTime your loved ones while they open their gifts, if you are not able to be with them in person.

For just £10, you can give people the gift of community this Christmas. You’ll cover the organising costs of a Virtual Meetup, so they can meet others who understand.

The power of knowledge

Understanding how your brain tumour impacts your day to day life is the first step to living better with a brain tumour.

Fatigue can be hugely debilitating, and it goes beyond any ‘tiredness’ you’ve experienced before. At Christmas time, this can impact your ability to be around lots of people for a prolonged period, to get out and do your Christmas shopping or to cook a regular meal – let alone a Christmas dinner. Using our fatigue resource, you can understand how fatigue affects you personally, and build your toolkit to help you manage it. This won’t mean you suddenly have huge amounts of energy, but you can prioritise what is most important to you, and work around the biggest barriers.

Our Know Hows are here to help you tackle topics like finances, losing your driving license and dealing with conflict, so you are equipped with knowledge to make the right choices for you. Our brain box is a one stop shop for resources to help you following diagnosis and is fully customised to suit the situation and diagnosis of the person it’s being sent to.

The gift of Knowledge is £40, providing a family with a brain box so they can feel empowered, resourced and more in control.

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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