Preparing for treatment as a caregiver

Any type of treatment for a brain tumour will have an impact on your life as a caregiver. This includes radiotherapy, chemotherapy and surgery. Here we have included some tips and information that may help when preparing for your loved one to undertake their brain tumour treatment.

Travelling to and from appointments

Travelling from home to the hospital for appointments for treatments can be time consuming and expensive. This is especially the case with radiotherapy, which can involve the patient having to go to the hospital every day for a number of weeks.

If you will be driving your loved on to the hospital, you may be able to get help with your travel or parking costs.

NHS Healthcare Travel Costs Scheme (HTCS)

This scheme may allow you to either claim back any travel costs endured through travelling to treatment appointments. You do have to meet certain eligibility criteria that has been outlined by the NHS, details of which you can find here.

If you are unable to drive your loved one to appointments, they may be able to get help with the costs of a taxi, although this would need to be agreed by the hospital or local clinical commissioning group prior to your treatment starting.

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.

For more information on help with transport and parking at the hospital visit the Macmillan website.

Preparing for treatment

The amount of notice you get before a therapy or surgery date can vary depending on the circumstances. Use the time before treatment to help yourself feel as prepared as you can, and identify key people around you who can help. You may find that lots of people around you want to offer help, but they might not always know what to help with.

Make a list of tasks that will need doing daily, and think about who you can delegate these to.

These could include:

  • Preparing meals that can be frozen
  • Childcare
  • Household chores
  • Transport to and from the hospital
  • Hospital visits – try to get a list of people who can rotate hospital visits so you can give yourself some space and your loved one can get varied social contact

It is tempting to avoid this subject, but it is a good idea during this period to review any personal documentation that your loved one may have such as advance directives or Living Wills. This is a legal document which specifies which treatments they would like to have (or not) if they are unable to communicate their wishes for others. It may also be an idea to have a discussion about power of attorney for healthcare, if they are unable to make medical decisions for themselves.

Discover our resources, designed to help you feel less alone and more in control.

Don’t forget that you can call us 24/7 on 01983 292405 or email us on hello@brainstrust.org.uk. We know how stressful it can be to prepare for brain tumour treatment as a caregiver and we’re here to offer advice and guidance, or just to act as a listening ear.

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

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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 cancerous. Non-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