In Brain News, Charity News

Life with a brain tumour comes with unique hurdles and uncertainty that at times can feel very unsettling. The current pressures in the NHS are affecting waiting and response times, proving to be an additional challenge for many people. In the wider world, we also have the ever-changing political situation, the cost of living crisis, and the Russian-Ukraine war as a backdrop of instability to our daily lives.

It’s important to acknowledge the uncertainty and worry, and know that these feelings are completely normal reactions to everything happening right now. We’ve put together some practical tips, from balancing news consumption to self-care, to help you deal with these feelings…

Curating your media consumption

In our ever-connected modern world, there’s a constant stream of information at our fingertips. While beneficial for keeping us up to date, the relentlessness of the news and our social media feeds can be overwhelming. It’s easy to take control though – if you’re finding social media too much, ‘curating’ your feeds by muting certain pages, groups or people can really help. They won’t receive any notification you’ve done this, and you can always ‘unmute’ if you wish. You can also choose to follow pages or join groups that have a more positive impact on your mental health – here at brainstrust we’re big fans of anything dog-related (rabbits and cats sometimes get a look in too)! You may find that an account dedicated to sharing pet pictures (or anything else that makes you happy) works for you.

The same goes for traditional media, like TV. Sometimes programmes might feature storylines about the brain tumour experience, and they may be triggering and bring up difficult emotions. It’s ok to switch off – being aware of your triggers and exercising boundaries is a hugely positive action to take to better care for your mind.

Distraction and relaxation

Similarly, you may find the news unsettling and anxiety-inducing. Setting limits on how much time you spend watching or listening to the news can be helpful, as can having a means of distraction and relaxation. Listening to audiobooks can take your mind off any worries – we’d recommend Listening Books if you struggle to read printed books. We also run virtual hypnotherapy sessions here at brainstrust; fantastic for helping you to tap into an inner state of relaxation. In the free, weekly group sessions, our hypnotherapist, Louise Baker, builds on neuroscience evidence to help you foster a state of calm, a resource you can draw on in stressful situations. Some people we’ve supported have also found arts and crafts useful in dealing with uncertainty, as it focuses your mind on an outward project, rather than spiralling inwards. Take a look at Lou’s, Anita’s, and Sarah’s journeys with creativity. You can sign up for our art time workshops and unleash your creative side.

Exercise and mindfulness

It’s not the magic remedy, but exercise can really help in times of uncertainty – and in many other situations. Moving your body, in whatever way you can – yoga, a swim, a run – often gives the thinking mind a break and helps relieve stress and tension. We know that having a brain tumour can make exercising difficult, but even a gentle walk, and getting out into the fresh air, can help if your mind is stuck in a loop of anxiety. More information about exercise for people living with a brain tumour can be found here.

The same goes for mindfulness. Building up the practice of being completely present and in the moment can truly improve your emotional wellbeing and reduce stress and anxiety. Check out our Mindfulness Know How to learn more.

Self-care and flexible scheduling

We all know that self-care is important, but beyond the buzzword that it’s become in recent years, taking time out, and treating yourself kindly, can really help to reduce anxiety. Planning things to look forward to is a great idea, but when living with a brain tumour, the uncertainty of the day-to-day can make it difficult to think ahead. This is where being flexible with your plans can help; scheduling activities which don’t necessarily need to happen at a specific time takes away the worry of disappointment. Whether it’s planning a coffee with a good friend who understands if things might change, running a warm bath, or treating yourself at the shops, make sure to schedule in some me-time.

Help from brainstrust

We have plenty of resources on our website to help you deal with uncertainty and worry. From setting boundaries to bringing structure to your day, and, in a nutshell, tips for living with uncertainty, our Know Hows are a great place to start. The cost of living crisis may also be unsettling, so the Money Matters section of our website is worth a look. We’re here to help anyone affected by a brain tumour diagnosis, so please do reach out if you need some support.

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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