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A new coalition of national charities who work to help children with cancer has been formed. It is being launched today with a challenge to the Secretary of State for Health, Jeremy Hunt, to do more for children with cancer.

Because of brainstrust’s experience and impact supporting families with a brain tumour, we are one of the founding charities of this coalition. The childhood brain tumour community will be represented by our dedicated service for children and families little brainstrust. The Coalition, called the Children and Young  People with Cancer Coalition is to be chaired initially by Kate Lee, CEO at CLIC Sargent. Frank Fletcher CEO of the Ellen MacArthur Trust assumes the role of Vice Chair.

4000 children are diagnosed with cancer every year

Every day 11 children and young people are diagnosed with cancer in the UK, that’s over 4,000 diagnoses every year. 4 out of 5 children and young people will survive cancer for five years or more, but 10 children and young people still die every week from cancer in the UK.

Children and Young  People with Cancer Coalition - image

The long term impact of brain tumours in children is misunderstood and unrecognised

Around 600 children and young people aged 19 and under are diagnosed with a brain tumour each year in the UK. And whilst survival is typically better for children, the long-term impact of a brain tumour diagnosis in a child is often misunderstood and unrecognised. Childhood brain tumours often result in longer term physical and mental challenges, problems with vision, and can even have repercussions on growth, puberty and fertility in later life.

Action and recognition is needed at a national level

The bigger picture is one of wider challenge for children with cancer. There are age-specific obstacles for both children and young people with cancer and their families which we believe require recognition and action at a national level.

The CYPC Coalition is a CEO-led charity Coalition which aims to improve outcomes for children, teenagers and young adults with cancer through having a unified voice; speaking up on issues that matter to our beneficiaries; offering mutual support between charities; sharing good practice and reducing duplication between organisations.

Where progress is needed for children with cancer

Today, a letter will be sent to the Secretary of State for Health and Social Care, which acknowledges the progress made to date, and outlines the areas for clarity or acceleration of progress to be made. Click here to download and read this important letter.

This letter highlights the need for progress in the following areas:

  • Improving experience of diagnosis
  • Access to clinical trials
  • Recovery packages for families
  • Ensuring every child has a cancer nurse specialist
  • Education about cancer in schools
  • Access to psychological support
  • Access to palliative care

“Our nation’s children deserve better”

Will Jones, brainstrust’s Chief Executive says, “Our nation’s children deserve better. The recent report into progress against the National Cancer Strategy is difficult reading. It highlights a frustrating lack of recognition and progress for children and families who are living with a cancer diagnosis.

Brain tumour diagnosis in children is still taking too long, there are too few brain tumour trials available across the board, there is not enough meaningful support for children who are recovering from cancer, there are too few nurse specialists, there is not enough education in schools, psychological support for children is simply invisible for too many, and access to palliative care is simply too complicated and disjointed.

This new coalition is vital. We will challenge this lack of progress in a supportive, constructive and collaborative way to make sure that our children get the attention and progress they deserve.

Any childhood cancer diagnosis is devastating, but we are clear about our remit and our goals. We will be working especially hard to make sure that the brain tumour community’s unique needs, your needs, are taken into account as we work together to drive improvement at the highest levels.”

Find out more

If you’d like more information about the new coalition, or would like to hear more about our children and families service little brainstrust – just get in touch.

The founding charities of the Children and Young  People with Cancer Coalition include:

CLIC Sargent
brainstrust
Ellen MacArthur Cancer Trust
Brain Tumour Charity
Brain Tumour Research
SimPal
Anthony Nolan
Children with Cancer UK
Teenage Cancer Trust
The Rainbow Trust
Bloodwise
Children’s Cancer and Leukaemia Group, Teenagers and Young Adults with Cancer
Solving Kids Cancer
Together For Short Lives
Trekstok

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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