Your brain tumour and work

Whether you have a brain tumour and your ability to work has been affected by your diagnosis, or you need time off to look after a loved one, changes to your work-life can be complicated and have a big impact on your mental health. There is lots of information and support that you can access to feel more informed and in control.

On this page you will find:

Working before or after treatment

From the point of diagnosis, you may want to think about your options for working and education. Many people choose to work around treatment – returning to work as soon as they feel able to after treatment. People with brain tumours may face issues that may make continuing to work or returning challenging. These might include:

Some may take longer to return to work, or change the type of work they do. Some people may never return at all, due to personal choice or because they are unable to. This can be a big change and a decision that might not come easily. It can be difficult to accept if you’re unable to return to work, but we can help you find a way forward. If this is something you’re struggling with, get in touch.

If you’re thinking about your options around work, here are some questions that might be useful to ask yourself:

  • What do you enjoy about working?
  • What do you need from work? Is the structure and purpose of your work important to you?
  • What adjustments might need to be made for you to return to work?
  • What can I afford?
  • What benefits could I receive if I stopped working? Check out our Know How on Finances and Benefits. You can also access excellent information about benefits from Maggie’s centres.
  • What conversations do I need to have with managers/HR /colleagues, and how often?
  • What support might I need from friends and family to continue to work?

know how returning to work

Returning to work

Returning to work can be a big step in recovery. It can bring a sense of normality, stability, routine and social contact. But we also know that it can be very daunting. This Know How will help you to prepare for returning to work, understand what help is available to you.

It has been written to encompass returning to work after bereavement as well as illness.

Download the Returning to work Know How here.

Your rights

If you’ve been diagnosed with cancer, this is regarded as a disability by The Equality Act 2010, and you are protected from discrimination at work. This means that reasonable adjustments have to be made if you choose to continue to work there. You can find out more about your rights from these websites:

Macmillan

Disabilityrights.org

You may also be able to get additional support to do your job through the Access to Work scheme.

Access to work

Signs, symptoms and effects of your brain tumour could entitle you to support from the government’s Access to Work scheme. The scheme can help you pay for things that may enable you to access work or do your job if you need things that are beyond reasonable adjustments.

If you have complex work needs, you can ask your clinical nurse specialist for a referral to specialist vocational rehabilitation services.

If your brain tumour diagnosis is causing you to worry about your finances, click here to find out what support is available to you.

Voluntary work

Volunteering can help to build on your skills and confidence, whether you are between jobs, gearing up to full-time work or have chosen to leave a paid role. Even if you have a disability as a result of your brain tumour or treatment, you should still be able to access these roles. You can find out more about volunteering on the Government website. The SCOPE website has lots of useful information for people with a disability.

We are always looking for enthusiastic volunteers at brainstrust to help us help people with a brain tumour feel less alone and better supported. Get in touch here.

Information for employers

If someone you employ has a brain tumour, there will be a lot to think about to ensure that you both feel informed and supported. It is worth catching up with your colleague regularly so that you can help with any adjustments and transitions. Macmillan have a fantastic new toolkit to provide guidance and practical tips for you and your employees – you can find out more here.

Your employee may be able to benefit from the government’s Access to Work scheme, which can sometimes pay for practical support to help your employee do their job, or access work more easily. Check out this helpful Access to Work Factsheet for employers.

Did this information make you feel more resourced, more confident or more in control?

sidebar brain tumour hub

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