In Charity News, Patient & Carer Events, Uncategorized

When you’re living with a brain tumour, the smallest of tasks can seem mountainous. Here Jane, our Support Specialist for London and the South East, recounts a recent trip to the shops with one of the people she supports. At brainstrust we know that it is this kind of support that can mean the most.

When the going gets tough, the tough go shopping…

Our Kent Meetup takes place at a restaurant in Bluewater shopping centre. We chose this venue because of the good public transport links and ease of parking, but what we hadn’t initially considered was just how convenient it would turn out to be, having the shops close by.

Photo by Anna Dziubinska on Unsplash

I had arranged to take Becky* to the Meetup as she is no longer able to drive, something that is unfortunately very common for people living with a brain tumour diagnosis, and she lives too far away for public transport to be a feasible option for her. On speaking to Becky ahead of the Meetup, she mentioned that she needed to get to the shops to buy a present for her dad, so we arranged to leave early so that we could spend a couple of hours looking round the shops before we met the rest of the Meetup group.

Becky and I had a lovely time at the shops – it was good for her to just be on a girlie shopping trip and to do ‘normal’ again, without considering her brain tumour diagnosis.

Whereas our conversations usually focus on aspects of living with a brain tumour and the limitations and frustrations that brings, during our shopping time Becky could be Becky again – she was the person, not the patient. She was also able to feel more in control and on top of things, as she achieved the important task of purchasing a gift for a loved one.

Your “new normal”

When you hear the words “you have a brain tumour”, there are a lot of things that you know will never be the same again. The upheaval of treatment and its subsequent physical and psychological effects, the difficult conversations with friends and family and bring forced to confront your own mortality – these are the very real issues that our community face. They are the obvious issues.

However, once treatment is over and it becomes possible to begin to settle into a “new normal”, people often assume that life will return to how it was before, and for many people, happily this will be the case. However, for many others this is where the real struggle begins. The difficulty of achieving something as simple as visiting the shops isn’t something that people necessarily consider could become a problem, but for many people living with a brain tumour, this is often the case.

Many things contribute towards making an ordinary thing like a trip to the shops really challenging. These vary from person to person, but can include losing your driving license, experiencing sensory overload, the unpredictability of seizures, difficulty communicating, memory problems meaning that getting lost is a very real concern, and physical disability.

So, what are the things that you can do to make a trip to the shops feel more manageable?

  • Pick a quiet time – avoiding lunchtimes and Saturdays can be a good idea
  • Consider wearing a baseball type cap to minimise glare from fluorescent lights overhead or ear defenders to minimise background noise, if you struggle with these things
  • Many stores now offer designated quieter hours to support their customers with sensory issues. These hours will typically have quieter music and fewer bright lights to help reduce the sensory overload. If you have a favourite store that you like to visit, why not make contact with them to see if they offer this service?
  • Ask a friend to go with you. Often our friends and family want to support us but simply don’t know what they should be offering to do. A trip to the shops could be the perfect way to catch up with someone, and your friend might be grateful for the tangible opportunity to support you

And if you’re reading this as the friend or supporter of someone living with a brain tumour – what can you do?

  • Recognise that they might not be the same person that they were before. Even though treatment has finished and they look the same as they did before, they may be struggling with ‘ordinary’ things
  • Offer to help. Take them shopping!
  • Drop an email to hello@brainstrust.org.uk and request our free guide ‘Walking a mile in our shoes: Tips from a brain tumour patient’s carer’. It’s packed full of tips and we’ll post it to you for free.
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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