Travelling

Having a brain tumour diagnosis can impact a number of aspects of life, including travelling and going on holiday.

On this page you will find information about the support available to help you with travel options for day to day life and for hospital appointments, and information about travel insurance for when you go on holiday.

Travelling to appointments at the hospital

When you are diagnosed with a brain tumour, this may involve regular hospital appointments, especially if you are having treatment such as radiotherapy.

If you have had to surrender your driving licence because of your brain tumour diagnosis, this can often mean having to rely on somebody else taking you to the hospital or use public transport or taxis.

If these are not viable options, or the cost of travelling becomes unaffordable for you, there may be options available to you that can help with this.

Find out about NHS services to help with travelling to hospital

Hospital car parking charges

Hospital car parking policies can vary across the UK, so it is best to double check the policy of the hospital your will be visiting in advance.

In England, many hospitals offer free parking for people with cancer, or a discount. This isn’t always well advertised, and in some hospitals it may only be in a certain area, so try and find this information out before you travel.

In Scotland, hospital parking is free at all hospitals apart from Glasgow Royal Infirmary, the Royal Infirmary of Edinburgh and Ninewells Hospital in Dundee.

In Wales, hospital parking is free for everyone.

In Northern Ireland, hospital parking is free at all hospitals if you are having chemotherapy or radiotherapy.

Driving

Driving is a topic that is frequently spoken about among our community. When you are diagnosed with a brain tumour of any type, and you hold a valid driving licence, you must inform the DVLA of this. Once you let them know, they will then assess whether you have to surrender your driving licence. This decision is based on many different things, including the tumour type and your treatment pathway.

Our ‘Driving’ Know How goes into more detail about the process of contacting the DVLA and how long you may have to surrender your licence for.

We know that the prospect of having to surrender your driving licence is a big challenge. It can mean a loss of independence, and the uncertainty of when you may be able to resume driving can cause feelings of anxiety. Below, you will find some information on some alternative travel options while you are not able to drive.

Download ‘Driving’ Know How

Travel assistance

If you are struggling with symptoms caused by a brain tumour, you may be entitled to help with some aspects of travel and getting around. In some cases, this may help to make day-to-day living a little easier.

While a brain tumour diagnosis doesn’t give you an automatic entitlement to any of the schemes outlined here, it is always worth looking into your eligibility according to your symptom burden.  Most of the items listed below require you to prove eligibility for certain disability benefits.

Rail travel

You can link your Disabled Person’s Railcard to your Oyster card to get a third off Oyster pay-as-you-go single fares and daily caps on National Rail, London Underground and Docklands Light Railway services. Register at any London Underground, Overground or National Rail station ticket office that issues Oyster cards.

London rail travel

You can link your Disabled Person’s Railcard to your Oyster card to get a third off Oyster pay-as-you-go single fares and daily caps on National Rail, London Underground and Docklands Light Railway services. Register at any London Underground, Overground or National Rail station ticket office that issues Oyster cards.

London Freedom Pass

If you live in a London borough, you can apply for a Disabled Person’s Freedom Pass to gain free travel across London and free bus journeys nationally. Some boroughs offer passes at their discretion to people who do not meet the eligibility criteria.

Bus pass

Contact your local county council to apply for a free bus pass.

Location app

what3words is a free app that helps you to easily and accurately identify your location to the emergency services. This could potentially be very useful if you have seizures and going out alone is a worry for you. Search ‘what3words’ in your phone’s app store.

Disabled parking Blue Badge scheme

Displaying a Blue Badge allows you to park in disabled parking bays, often meaning that you can park closer to your destination.

You may be eligible for a Blue Badge if you cannot walk or have difficulty walking, and can evidence this in your application.

Additionally, the criteria have recently been expanded so that people with ‘invisible’ disabilities are now potentially eligible for the scheme. This means that in addition to physical disabilities, non-physical disabilities, including cognitive impairment, psychological effects, such as feeling overwhelmed by busy or loud environments, and cognitive fatigue, are now taken into account.

Check your eligibility and apply here https://www.gov.uk/apply-blue-badge (England, Wales & Scotland) or here https://www.nidirect.gov.uk/information-and-services/motoring-and-transport/blue-badge-scheme (Northern Ireland).

RADAR key for accessible toilets

If treatment can give you an unpredictable stomach, or if you suffer from sickness, it can make the thought of going out anywhere new really challenging. A RADAR key offers you access to the 10,000 locked disabled toilets in the UK, making going out in public far less worrying.

More information about the RADAR National Key Scheme and accessible toilets is available here: https://www.which.co.uk/later-life-care/home-care/out-and-about/radar-keys-and-locked-toilets-apsxd1p6br8k?gclid=CjwKCAiAwrf-BRA9EiwAUWwKXoro-oWYtTw0O8IDbvFYqsWt973kql_cj5v-YWXtjf7HRSAIkYPsQhoC4EEQAvD_BwE

Travel insurance

When looking for some time away, travel insurance is something that we know can be a challenge when you have a brain tumour. The brain tumour hub has a list of travel insurance companies that will provide cover for people with pre-existing medical conditions.

Find travel insurance providers

Practical travel advice

If you are travelling abroad following a brain tumour diagnosis, you may find that you have more things to think about to help you prepare for your holiday.

Find practical tips when travelling abroad

Find out more about specialist travel insurance, as well as supported holiday resorts and respite breaks on the brain tumour hub.

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