Money matters

As if you haven’t got enough to worry about. Having a brain tumour will, at some point, impact on you financially as well as physically and emotionally. The same guiding principle applies – look this tiger in the eye. The more prepared you are, the better you will be prepared if you need additional financial support. It’s much better to be proactive, than reactive. The good news is that there is a wealth (pardon the pun) of support out there.

Our Money Worries Know How is a great place to start.

Too much to take in? Give us a call on 01983 292 405 and we’ll talk you through it.

On this page you will find:

The brain tumour hub

Firstly, have a look at the finance section of our brain tumour hub, where lots of useful financial services are listed. Click here to use this online tool.

Benefits and finance

Call Macmillan Benefits Line 0808 801 0304

Help with the Cost of Cancer is an excellent booklet, published by Macmillan. It provides information about all of the different kinds of help available for people with cancer. Download it here.

A Guide to Grants for Individuals in Need
(Directory of Social Change ISBN: 1-903991-52-8) is a directory published each year of over 2000 charities and trusts that will provide financial help to people in need. It may be available at your local library.

Independence at Home is a Trust which will make grants towards any expense which is not covered by statutory provision and which is related to the needs of a person living at home with a disability. Apply by letter to:

Mrs Mary Rose
4th Floor
Congress House
14 Lyon Road
Harrow
HA1 2EN

www.turn2us.org.uk believe that no one should have to live in financial hardship. So if you’re struggling financially or you’re worried about money, visit their website. It also has a free, confidential helpine and independent service for people who do not have internet access or need help to use it. The service helps people in financial need access the money available to them through welfare benefits and charitable grants.

Call on: 0808 802 2000 (9 am-8 pm Mondays-Fridays)

Calls are free for all landlines and for major mobile network providers (including ‘pay as you go’ phones) – EE, Orange, 3, Vodafone, T-Mobile, Virgin and O2 – charges may apply for other network users. However, this is not guaranteed and we recommended you check with your provider.

This website is really useful in terms of explaining what is available if changes to housing are needed:

https://www.disabilityrightsuk.org/housing-grants

Again this one explains how you can be assisted in applying:

https://www.citizensadvice.org.uk/housing/moving-and-improving-your-home/help-with-home-improvements/

Travel Insurance

If you have a health problem, such as brain cancer, you will probably find it tricky trying to get travel insurance. You should always be honest about your condition; if you aren’t and then you claim, the policy will be invalid.

There are options and you will need to set aside some time to find the best policy. You will be asked for loads of information, so put the kettle on and settle down with a cup of tea as you make the call. You will be asked the following:

  • Personal information – names, ages, contact information
  • Your travel plans – where, when and for how long
  • Medical information – be prepared to talk about your diagnosis, treatment, medication, when you last saw your GP, symptoms

There is a comprehensive list of travel insurance providers (who we know patients have used) at www.braintumourhub.org.uk

Financial help with medication

Sometimes when living with a brain tumour you are automatically entitled to free prescriptions. And sometimes you can apply for certificates that entitle you for free medication. Some prescribed items are always free (such as medication given to hospital inpatients). Your prescriber can help you as can this link:

https://www.nhsbsa.nhs.uk/help-nhs-prescription-costs/free-nhs-prescriptions

This link explains about medical exemption certificates and which conditions are covered:

https://www.nhsbsa.nhs.uk/exemption-certificates/medical-exemption-certificates

And of course you can always call brainstrust on 01983 213405 or email hello@brainstrust.org.uk

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

Date published: 17-05-2009
Last edited: 31-08-2017
Due for review: 31-08-2020

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