Positive behaviour changes

Living with a brain tumour diagnosis impacts many different aspects of your life. This can include brain tumour related behaviour changes, which can impact how you may react to certain situations. Here you will find some strategies and resources to help you manage changes in behaviour, maintain positive behaviour and achieve a good quality of life.

Quality of life

When things get on top of us and we feel overwhelmed, it can impact our feelings, thoughts and behaviours.

Using proactive strategies can help to improve your quality of life and help you to develop and shift your behaviour to help you feel more in control and on top of things.

How can you do this?

Book a coaching conversation with a brainstrust support specialist.

We know that when you hear the words “you have a brain tumour”, you need support from people who not only understand the fear, confusion and isolation, but who can empower and resource you to manage these feelings.

All of our support specialists are trained coaches. Coaching focuses on understanding your personal priorities and developing strategies and clarity to achieve a better quality of life. We don’t give advice, because we understand that every situation is unique. What we do is help you work through the biggest challenges of life with a brain tumour diagnosis. You can access this support through our helpline on 01983 292 405, or email support through our helpline, or email support from your local support specialist.

Helpline number: 01983 292 405

Find your local support specialist

Take a look at your diet

It is well known that there is a strong relationship between mood and food. Unhealthy eating patterns and nutritional imbalances can cause mood swings and increased fatigue. Without a steady source of fuel from the foods we eat, our minds and bodies don’t function well.

Taking a look at your diet and fluid intake and seeing what changes you could implement could help with how you may be feeling. A combination of a sensible diet which includes food from all groups – lean protein, complex carbs and a small amount of healthy fats, along with rest and exercise can help you to maintain a healthy weight and give you more energy.

We run online Thrive workshops on diet and nutrition. Take a look at our events calendar to book a spot at any of our upcoming events.

Accept the way you feel

Acceptance helps us to come to terms with the difficulties that come with life and what is out of our control, whilst at the same time committing to action that will improve our quality of life. Read more about acceptance here.

Build mindfulness into your day

brainstrust know hows mindfulnessThe practice of mindfulness is about taking the time to focus on a particular task or activity, feeling relaxed yet awake and aware, and being completely in the present moment.

Take a look at our Mindfulness Know How to help you explore how you can build mindful practices into your daily life.

Your environment and surroundings my fatigue book: can help with brain tumour related behaviour changes

A brain tumour diagnosis can impact how you view your home and surroundings. Simple tasks that used

to come so easily may now feel like a bigger challenge, and you may feel like you need more time and space to yourself. By making some simple adaptations to your environment, this can help give you the space and time you need for things that are more important to you.

You can find some tips and strategies to help you organise your environment and create a sanctuary in our fatigue resource.

Self-help strategies

Self-help is exactly that – a toolkit at your fingertips, that you can ‘help yourself’ to, to deal with a situation as it arises. Setting aside some time in your day to prioritise your own needs will give you the space you need to help deal with the challenges that come with living with a brain tumour diagnosis.

There are many benefits to self-help for people who are living with a long-term condition, illness or disability, as well as their caregivers. People can suffer less pain, anxiety, depression and fatigue, have a better quality of life, be more active and independent and live longer.

Here you will find some suggestions of self-help strategies that you can use:

Pleasurable activities

In the busyness of our lives, sometimes we lose sight of pleasure. We are so busy trying to sort, manage, orchestrate, drive that we forget we need a balance.

Make a list of things you like to do that make your heart sing. These will give you energy. Many do not use much energy; many are actually quite small things, like sitting with a favourite piece of music or feeling the sun on your face, listening to birdsong or having a cuddle.

Look at your list often to remind yourself and promise to do one every day.

Dealing with the overwhelm

When situations change, it is hard to know which way to turn. Things that you did so easily suddenly become overwhelming. If you are a person living with a brain tumour, there may also be changes in your ability to function as you used to. Some things are within your power to change. Some are not.

This Know How is designed to help you understand the difference, and prioritise the things that you can have an impact on.

Living with uncertainty

When you have been diagnosed with a brain tumour, you feel that your life is less secure, more fragile than it once was. You find yourself living in a space where nothing seems certain anymore. It’s a scary place to be, and it can leave you feeling out of control and overwhelmed.

This Know How will help you get comfortable with living with uncertainty.

Reactive strategies

Sometimes there may be the need for a more reactive approach to help with any challenging situations that you may be facing as a result of your brain tumour diagnosis. This applies to caregivers as well.

If you or someone close to you has identified changes in your behaviour, there are certain steps you can take to try and help to manage and reduce instances of out of character behaviour.

A good starting point can be to put some simple measures in place. These can include:

  • Ensuring continued social relationships
  • Encouraging engagement in meaningful activities
  • Reducing unnecessary noise and clutter
  • Maintaining a comfortable sleeping environment
  • Developing a structured day.

You can find details of reactive strategies in our Behaviour and Personality Change resource, which you can download here: These strategies have been taken from our Behaviour and Personality Change resource, which you can download here.


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


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 tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites


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.


Not cancerousNon-malignant tumours may grow larger but do not spread to other parts of the body.


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


If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here: