In Campaign News

Great Outdoors Month

This month is Great Outdoors Month, and this week is World Wellbeing week, so what better opportunity for our Head of Support Jane Gardiner to consider the benefits that getting outdoors can have for our well-being?

Many a motivational quote is attributed to Albert Einstein, sometimes mistakenly… I like to think that “look deep into nature, and then you will understand everything better” is one of the genuine ones, because it speaks to the beautiful simplicity of the experience of being mindful in nature.

The problem of ‘never enough’

Have you noticed how modern living encourages us to constantly keep pushing ourselves, to keep striving for more (more stuff! More money! Bigger house! A better job!), and to be always busy in order to succeed in this.  A culture where we can never have enough encourages us to consider ourselves lazy if we’re not always busy, failures if we don’t achieve material milestones, or just not trying hard enough if we aren’t surrounded by material wealth.

I’ve noticed that this societal way of thinking can cause huge levels of distress for people living with a brain tumour diagnosis if their symptom burden means that they are forced to leave employment. It’s not a universal response of course, but people often report to me feeling as though they’ve lost a sense of purpose because they are no longer constantly busy, or that they are no longer of value because they aren’t contributing financially as they once did.  Perhaps if we can re-train our thinking to discover that we can find purpose in other ways, and offer value to others in different ways, this might help. Getting outdoors in just one way in which we can achieve just that.

Experiencing this moment, now

By simply stopping to appreciate the beauty of all that surrounds us, we can afford ourselves the experience of feeling connected, a sense of humility, of peace, and of calm.  Too often we’re thinking about what happens next (from turn taking on conversation to careers, to even the basics such as what to have for dinner tonight), so we forget to experience and savour the now.  Escaping outdoors can be freeing as we can more easily let go of these distracting preoccupations and allow ourselves to focus on the beauty of our surroundings.

By encouraging ourselves to focus on our breath and on the moment when we are outdoors, we can find that our minds stop racing, our thoughts are clearer and a sense of perspective and calm can be achieved.

The outdoors as exercise

There are other clear benefits to getting out there. You don’t have to go for a 10 mile run or sweat it out in the gym in order to feel the benefits of exercise. Movement in whatever form suits you, whether it’s gardening, walking or slowly sauntering, is great exercise achieved at your own pace.

Sometimes it can be tough to motivate yourself to get out there, so it can be helpful to arrange to meet a friend. And definitely start small if you need to – a slow wander to the end of the drive is a massive achievement if you haven’t been able to be mobile for a while.

Being outdoors can lift our spirits

Numerous studies have shown that gardening is beneficial to our mental health, through encouraging a sense of nurturing, connection and relaxation; and that spending time amongst nature can reduce negative thoughts.

Being outside also helps us to benefit from vitamin D, the sunshine vitamin, which many of us lack during the winder months. Amongst other health benefits, vitamin D can help to regulate mood, with some claims that this can help reduce depression.

There are also huge mindfulness benefits to being outside as it is far easier to be present in the moment when outdoors. Hearing birdsong, watching your footing on a path, and observing the beauty around you, offer simple but effective opportunities to be mindful. If you are less physically mobile, then simply sitting outside and watching the world go by, or sitting in nature, can deliver the same benefits.

It can offer a sense of purpose

Outdoor activities such as gardening can offer a renewed sense of purpose through nurturing and caring for living things. If you buy some lovely flowers for the garden, for example, then you’ll have to get out there to water them, which can be a good motivator for movement. This can be particularly helpful if you are less mobile, meaning that getting outside is a physical challenge making you less inclined to want to.

Taking up walking (or slowly sauntering!) can offer a gentle challenge as you gradually increase distance covered, or simply challenge yourself to complete a set time goal spent outside each day. By setting goals (which could be as simple as spending 20 minutes walking each day), these soon become embedded as habits that are so beneficial to well-being.

Outdoor mindful exercises

This month I’d love to challenge you to try these simple mindfulness exercises outside.  Why not use this challenge as motivation to get outside to give it a try?

  • Go for a mindful walk in nature. Pay attention to your feet as they carry you forward. Go slowly. How does each part of the foot feel as it makes contact with the ground? Simply observing the sensations of your body as you move can really help you to focus in on the present moment.
  • Observe nature. You don’t have to be mobile for this one. If you are lucky enough to live by the sea, then sit and watch the waves rolling in on the shore. No sea? Observe the rain falling in the puddles or the wind moving through the trees. By focusing on these things you are encouraging your mind to quieten and calm.
  • Try ‘forest bathing’. Not taking an outdoors bath as the name might suggest, forest bathing is the practice of simply sitting quietly outside and inhaling the sounds around you. The gentle breezes, the trees swaying, the birdsong: gifting yourself the opportunity to sit with these sounds can offer a sense of calm and restore balance.
  • Observe your breath. Simply observe the inhale and exhale of your own body – don’t try to control it or manipulate it. Just observe it and appreciate the moment.

We know that, for all of its benefits, getting outside won’t remove the challenges of life with a brain tumour. But we hope that you feel some of the positive results of spending time outdoors.

To talk to us about ways that we can help you live life with a brain tumour, get in touch.

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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