In Charity News, little brainstrust, Press Releases

Radiotherapy And Me: our new guide to help children and young people feel resourced and prepared for their treatment

After being diagnosed with a brain tumour, children and teenagers feel scared, and their carers isolated. In the time following diagnosis, you receive overwhelming amounts of information which at the time is hard to process. You don’t have to do this alone.

Our resources and support are your disposal so that you feel better resourced, less alone and more in control. The newest addition to our little brainstrust resource library has been written to help children and young people understand radiotherapy.

Reducing anxiety around radiotherapy for children and young people

The newest addition to our little brainstrust library is our Radiotherapy And Me guide. It is designed with teenagers, young people and parents in mind. The guide helps young people understand what to expect when they have radiotherapy, so they feel less anxious and more prepared for treatment.

The guide covers:

  • How a brain tumour is treated
  • Questions to ask the clinical team
  • What is radiotherapy
  • Do you need radiotherapy
  • How radiotherapy works
  • Radiotherapy treatment process
  • Side effects from radiotherapy
  • Radiotherapy for brain and spinal tumours
  • Other types of radiotherapy
  • Reading list
  • Illustrated glossary

Written in accordance with brainstrust’s rigorous production and review process, with the input of expert healthcare professionals, patients and caregivers, Radiotherapy And Me is informative without being intimidating – so young people with a brain tumour feel prepared for radiotherapy treatment.

This guide was illustrated by Sarah Smizz, an artist, researcher and qualified therapeutic radiographer. She is passionate about making healthcare information accessible, engaging and compassionate.

You can read Radiotherapy And Me online here or email hello@brainstrust.org.uk to request a hard copy. If you are a healthcare professional, you can bulk order hard copies of the guide here.

Other resources for families when a child or young person is diagnosed with a brain tumour

Many of our resources can be found our website. A good starting point would be to order a brain box which will be tailored for you and your family. Below are resources specifically designed for families when a child is diagnosed with a brain tumour.

whos who children front cover

Who’s who: children and teens medical team

This Who’s Who is designed for parents, children and teenagers to gain an insight into what the role of each professional is.

Download the Who’s who: Children and teenagers’ medical team

little brainstrust know hows overwhelm

How to deal with overwhelm

When situations change, it is hard to know which way to turn. Things that you did so easily

suddenly become overwhelming.  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.

Download the How to deal with overwhelm Know How

 

little brainstrust know hows cannabinoids

Cannabinoids

This Know How is intended to bring some clarity to a confusing topic. Medicinal cannabis is a broad term for any sort of cannabis-based medicine used to relieve symptoms. There are many mixed messages about cannabis in the media and within the brain tumour community. Many cannabis based products are available to buy online, but their quality and content is not known. They may be illegal and potentially dangerous. Certain things inside cannabis contain anticancer properties, but this does not make it an anticancer treatment.

Download the Cannabinoids Know How

How to get a second opinion

We are often asked about second or even third opinions. Seeking more opinions has both advantages and disadvantages. This Know How has been designed to help you understand the pros and cons of a second opinion, bring some clarity as to what the options are and inform you how to go about seeking another opinion.

Download the How to get a second opinion Know How

How to handle conflict

When you are living with a brain tumour, emotions can run high, as people are living with stress. At times like this, we tend to go to our default behaviour – what we know – and this can make things worse. This Know How will help you understand how to handle conflict, and try and turn it into something productive.

Download the How to handle conflict Know How

 

 

 

Reliable websites

Access to the internet at the tips of our fingers has made getting hold of information quicker and easier than ever, but how can you know what sources to trust? Misinformation spreads fast online, and is sometimes shared by people with a large following.

This Know How will help you to understand what reliable websites look like, establish fact from fiction online and stop feeling overwhelmed by the volume of information available.

Download the Reliable websites Know How

 

All our resources mentioned above are available as hard copies, if you are a patient or caregiver please email or call 01983 292 405 to order a hard copy.

Healthcare professionals you can  bulk order our resources on our shop. 

We are always looking to grow our information resources, so if you have an idea get in touch by email or call 01983 292 405.

 

, ,
The easing of lockdown and the end of shieldingBrain News, Charity News
coping when youre overwhelmed scaled
Managing your feelings at the easing of lockdown Charity News

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