In Charity News, Press Releases

As face coverings become mandatory in more circumstances across the UK, we want to help combat any anxiety they may cause you whilst keeping you safe.

Unless we are medically exempt, it is now (or soon will be) our obligation to wear a face covering in certain public places, such as on public transport and in shops. These do not need to be PPE or medical quality, just a covering of your nose and mouth to help protect you and others from the spread of Coronavirus.

Click here to read the government guidance around masks for each of the four nations in the United Kingdom.

We have a limited amount of brainstrust branded face coverings for the brain tumour community available to pre-order. Comfortable, affordable and reusable, they meet the government’s requirements and will help you feel safe and protected when out and about.

Feeling anxious about wearing a mask?

For many of us in the brain tumour community, wearing face coverings to keep everybody safe is a positive step. Particularly for those more at risk, or looking after people that are, any action to help stop the spread of the virus makes getting back to some sort of normality more possible.

However, we know that the idea of wearing face coverings can be scary and uncomfortable too. We know that there are some consequences of brain tumour treatment that can make wearing a mask more unpleasant – such as having a permanently dry mouth, caused by radiotherapy. If you’re a glasses wearer, masks can be difficult because they fog up! Specsavers have pulled together some tips to help you avoid this. 

We also understand that for all sorts of reasons, wearing a face mask can make you feel anxious. Below, Jane, one of our Support Specialists, outlines why this might be, and offers some practical tips to support you in managing this new challenge.

Why can masks provoke anxiety, and how can we overcome this?

Is the thought of wearing a mask causing you anxiety or concern? We know that many of our community are struggling with this right now, because you’ve been telling us that you are.

Anxiety encompasses feelings of worry, nervousness, or dread that something bad is about to happen. Although unpleasant, occasional bouts of anxiety are natural and sometimes can even be considered positive: taking an evolutionary perspective we know that by signalling that something isn’t quite right, anxiety can help us to avoid danger.  It can also be positive in that it can provoke us to make meaningful changes.

Anxiety can be triggered when there is uncertainty, and so if the thought of wearing a mask is concerning for you this could just be a natural response from your body about a situation that’s new or uncertain and where the outcome isn’t yet defined.  Quite simply, it’s normal for some people to feel anxious at the thought of wearing a mask.

Seeing others wearing a mask can also cause anxiety.  This can be especially true for people living with a brain tumour diagnosis, because the medical type mask can evoke memories of past trauma from time spent in hospital and receiving treatment, as the medical professionals may have been wearing masks. Prior negative experiences can be contextual and so it may be the case that the context of seeing others wearing masks is coded as part of the traumatic experience, and so now being surrounded by this again can cause panic.  This can also be true of our own specific treatment experience, for example, being fitted for a radiotherapy mask can be traumatic.

And of course, when we’re feeling anxious, the last thing we want is to feel smothered, which is how some people feel when asked to wear a mask themselves.  So what are some practical steps that we can take to try to minimise the feelings of anxiety that masks can provoke?

Wearing the mask more often

In the same way that social anxiety may be alleviated by exposure therapy (where you are gradually exposed to a feared situation or object, and learn to become less sensitive over time), you may find that wearing a mask for short periods of time in a safe space, such as at home, or in the company of a trusted companion, might help.  By safely and gradually exposing yourself to the concept of wearing a mask, you may slowly overcome your fear.

Know that mask wearing is safe

Long before Covid-19, healthcare professionals and others have routinely been wearing masks as they go about their daily routines.  Although much of the media hype may lead us to believe that this is a new way of being, the wearing of masks has been routine for many for some time.  Reassure yourself that the wearing of masks is considered to be safe.

Re-focusing 

Although perhaps more easily said than done, not focusing on the small discomforts generated by the mask wearing can help.  Can you distract yourself by focusing on other things, perhaps by listening to a podcast on your walk to the shop?  Also remember that mindfulness practice can help here; focusing on your breathing and observing your surroundings as well as your own thoughts can be a great help.

Grounding techniques

This is a useful tool to combat feelings of panic in the moment and can help distract you from your challenging emotions and help you to reconnect with what’s around you.  We know that it is helpful to be mindful of what is around us, but in times of panic, take this a little further by deliberately utilising your senses.  What can you see?  Try to notice 5 distinct things, perhaps in a certain colour.  What can you smell? Try to identify exactly what you can smell.  What can you feel? Focus on the feeling of your feet on the ground; try walking, counting your steps as you feel your feet make contact with the ground can be helpful.  Perhaps touching your clothes and noticing how they feel; is your jumper soft?  All of these things, as simple as they might sound, can be very effective in helping to ground us into the reality of the present situation and distract from the unwanted challenging feelings being experienced.

Understand the root of this specific anxiety

Being able to positively identify the circumstances that have triggered your anxiety (for example seeing others wearing masks reminding you of past time spent in hospital), and simply reminding yourself that you are not there now; instead mindfully noticing all that is currently around you, can be a helpful strategy for some.  By identifying the trigger you can begin to understand the response, and you can positively remind yourself that you are no longer in that place – right now, you are safe.  Tell yourself this.

Develop healthy habits

Developing and maintaining positive healthy habits is an excellent way to reduce anxiety in general, although not necessarily mask specific.  Establishing healthy sleeping and eating routines, exercising and minimising caffeine and alcohol intake can all contribute to positive mental health.

Make it more ‘you’

Consider wearing a mask with a pattern or a pleasing colour.  This will differentiate it from the sterile medical masks that may cause us to re-live past medical traumas.  Perhaps pick a pattern that reflects your personality or interests, and try to focus on this positive. By personalising or ‘owning’ the mask, you just might feel more positive and in control of it.

How brainstrust can help

We are running a series of free to access live webinars on a comprehensive range of topics that you’ve told us are important to you if you’re living with a brain tumour diagnosis.  You’ll find webinars on topics that will support you in managing anxiety, such as our hypnotherapy series that uses a blend of psychology and neuroscience to offer you practical tools to manage anxiety; or our nutrition programme to help support your overall physical and mental health.

Keep your community safe, protect yourself and your loved ones and represent the brain tumour community in a brainstrust face covering

brainstrust face covering – £6.99

A machine washable, comfortable cotton mask, perfect for heading to the shops or when on public transport.

brainstrust face covering bundle – £18

A set of three brainstrust face masks, ideal so you always have one handy when others are in the wash. This bundle saves you £3.

brainstrust neck warmer – £11.99

This neck warmer is practical, easy to remove and can be worn in several different ways. Perfect for shopping and public transport but also for running, cycling and other outdoor activities too.

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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