In Brain News

Time to slow down for the summer

“Rest is not idleness, and to lie sometimes on the grass under trees on a summer’s day, listening to the murmur of the water, or watching the clouds float across the sky, is by no means a waste of time.” – John Lubbock

What springs to mind for you when you think of July?

If you are American it could well be independence, fireworks and celebration. If you are a student or an educator, quite possibly it’s the beginning of the holidays and the start of freedom for 6 glorious weeks.  For some it’s bees, flowers or festivals.

If you think of hot humid days and evenings forcing you to sloooooow down, then you’re with me on this one. This month I’d like to take a moment to appreciate the importance of slowing down, resting and taking it easy.

What’s the rush?

I often have conversations with people who feel guilty that they aren’t doing enough. Sometimes they are recovering from surgery or in the middle of treatment, sometimes they are suffering with fatigue, sometimes they find situations and tasks overwhelming.  Often people find that they simply aren’t able to attend to all of the tasks and jobs that they once performed pre-diagnosis. Whatever the reason, and the reasons do vary, there is usually one constant theme, and that is one of guilt.

Why do we feel guilty?

It feels like our society really values busy-ness and always being on the go go go.  ‘I’m so busy!‘ possibly equates in some people’s minds to ‘I’m important!‘ or ‘I’m needed!‘, offering validation and affirming status or purpose.  Ask someone how they are and ‘I’m fine, I’m just really busy‘ is often the response, seemingly declared as a badge of honour.

Of course all of this is absolutely fine, but it does cause a problem if as a result of this, taking rest becomes perceived as a luxury, and people feel guilty for slowing down.

The case for rest

We accept that sleep is important for our health, and I would suggest that we need to start considering rest in the same way. Taking time to slow down and rest isn’t in any way a luxury, it’s also really important for our well-being.   Rest is essential for healing our bodies when we have been ill, as we cannot achieve homeostasis when not rested.  It also reduces stress, which has been shown to have a negative effect on our immune systems.  Resting also improves productivity, creativity and decision making, as our brains can fatigue just like any muscle will do without rest. Being more rested can also improve our overall mood, which is a positive factor for our relationships with others.

The 10 most restful activities

A 2016 large scale international study The Rest Test surveyed 18,000 people’s attitudes to rest, and reported on the top 10 most useful activities for rest. These were:

1. Reading – 58% of people said that they find reading to be restful. People who scored high on a scale which measured whether they felt they were flourishing in life were even more likely to choose reading.

2. Being outside in nature – see my recent article about this for more information on the health benefits of the great outdoors.

3. Being on your own – even extroverts in this study rated being on their own as more restful than being with other people.

4. Listening to music – this was more popular with younger people in this study, but still ranked highly.

5. Doing nothing in particular – every age group in the study rated this highly apart from the 31- to 45-year-olds. However some people said they find it hard to do nothing and the thought of it made them feel guilty or stressed.

6. Walking – for some this is a perfect restful activity but understandably for others it is a huge challenge.

7. Having a bath or shower – interestingly this seems to get less popular with age as was chosen by far less people over 60. Perhaps this is due to the effort sometimes required for these activities.

8. Daydreaming – this is an interesting one as a tendency to overthink can be associated with depression.  Clearly though for many, it is a valuable tool to achieve rest.

9. Watching TV – more women than men chose this one and more young people than older people, but it came way behind reading in every age group.

10. Practicing mediation or mindfulness – come along to one of our online Calmness and Connectivity sessions to practice relaxation in this way, or why not take a look at apps such as headspace.

What will you do this month to try to build rest into your days?

Brain tumour pathway: end of life caresupporting you

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 cancerousNon-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