In Brain News

There are over 500 families impacted by a childhood brain tumour diagnosis every year, with many children living with complex conditions and late effects from childhood through to adulthood.

 

The Ready Steady Go programme has been developed by Southampton Children’s Hospital to support teenagers, parents and caregivers to be in control of what information they receive from their healthcare team but also to support the transition into adult services from children services.

 

Hello to children’s services

When your child has a long term condition it can be stressful, overwhelming and can cause anxiety. Southampton Children’s Hospital have developed this programme to support parents or caregivers when their child has been diagnosed with a long term condition.

 

 

 

 

The introduction leaflet can be read online. Some key points mentioned were:

  • How the healthcare team can help you manage your child’s condition
  • What questions you should ask. The 3 main questions mentioned are:
    • What are the options for my child?
    • What are the pros and cons of each option for my child?
    • How do I get support to help make a decision that is right for my child?

You can read and print the full leaflet online. You can also access the Ready Steady Go  questionnaires on their website here. Each questionnaire is developed so that you are prepared with all the necessary information and feel informed about the decision process.

Transition to adult care

When you are diagnosed with a brain tumour as a child, there will come a time when you will have to transition into adult care from the children’s services. The transitioning process should be a gradual process that gives young people, parents and everyone involved in their care, time to get ready to move to adult services.

Moving away from a team of doctors and nurse you have seen for years can be a daunting for everyone involved but hopefully with this bit of information, you can feel more prepared and confident about the move. The transition process includes deciding which services are best for you and where you will receive care.

The Ready Steady Go programme is here to help you during this transition process.  This programme is for anyone over the age of 11 with a  long-term condition.

Some key points we collated from the Transition: moving into adult care leaflet are:

  • You need to move into adult services because some of you care needs may not be available under the children’s services
  • There is no exact time or age to move into adult services. Your doctors and nurses will have an idea when they feel you may be ready but it is important you are ready and involved in the decision process
  • You may well be able to choose where you could have your adult care dependent on the services you need
  • Your current healthcare team can help you plan your transition
  • Your family and carers have played a big role in your care, talk to them and they will be able to give lots of helpful advice. You parents or carers may well play a big role during your transition process and long after, talk to them and your healthcare team because to feel supported

You can read the full introduction leaflet online.

Other useful documents for this programme are:

  • Transition programme
  • Parent/carer questionnaire
  • Ready questionnaire
  • Steady questionnaire
  • Go questionnaire

Hello to adult services 

 

Transitioning into adult services can be scary and this information guide is developed to ensure you feel confident for this change and have the knowledge about your condition. Have  read of the following guides learn more:

  • Hello to adult services (for children transitioning into adult services)
  • Hello to adult services (for adults)

There are also some questionnaires available for you to download online here.

You can also watch this video where patients and staff from Southampton Children’s Hospital talk a about the Ready Steady Go programme.

If you would like to use the Ready Steady Go transition programme in your hospital, please contact Dr Arvind Nagra, consultant paediatric nephrologist and clinical lead for transitional care on ReadySteadyGo@uhs.nhs.uk

For healthcare professionals

If you would like to use the Ready Steady Go transition programme in your hospital, please contact Dr Arvind Nagra, consultant paediatric nephrologist and clinical lead for transitional care on ReadySteadyGo@uhs.nhs.uk

If you want to talk about any of the information mentioned above, please get in contact with our Support Specialist for Children and Families Khadijha.

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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