In Campaign News, Press Releases

The Children’s Funeral Fund can’t wait

We support the immediate implementation of the #ChildrensFuneralFund.

“Brain tumours are the biggest cancer killer of children. We’ve worked with countless families that have lost a child to this cruel disease. Without the Fund, families already facing the devastation of losing their child face the added burden of worrying how they will pay for their funeral.” Khadijha, Support Specialist for little brainstrust

The Prime Minister announced the Children’s Funeral Fund in March 2018, but since then, nothing has been done. It can’t wait.

The open letter

Sir,

It’s been over a year since the Prime Minister Theresa May promised that parents whose child had died would no longer be plunged into debt or face the worry about how they were going to pay for their child’s funeral.  Following a tireless campaign led by Carolyn Harris MP, whose son Martin died at eight-years-old, and supported by CLIC Sargent and the Co-op, Mrs May announced in March 2018 that the Government would set up a Children’s Funeral Fund to cover costs for bereaved families. But nothing has happened and desperate families are still paying huge amounts to bury their child. Today (1st May) Carolyn will be raising the issue in a debate in Parliament and asking the Government how long bereaved families have to wait for the support they were promised.

In this time an estimated 4,700 children have died. With the average funeral costing £4,000, the failure so far, to deliver on the government’s promise will could have cost families up to an estimated £18 million on funeral costs in the past year.

Cancer is the most common cause of death by disease for children aged 1 to 15 years. In the time since the PM announced the Children’s Funeral Fund around 230 children will have died from cancer in the UK. The affected families could have paid out nearly £1 million in funeral costs even though a Children’s Funeral Fund is Government policy. Every day that this is delayed means more hardship and worry for parents already facing the devastation of losing their child. 

We know that the Government has had other pressing matters to deal with but no parent should have to rely on loans or their friends and family clubbing together to pay for their child’s funeral. One mum whose baby died from cancer said that making your child’s funeral special is so important because it’s the last thing that you can do for your child because they’ll never have a prom, wedding or any other celebration.

This fund is so sorely needed as the Government clearly agreed so our simple question is – why has nothing happened? The longer implementing this Government policy is delayed the more families will have to pay through the pain. No family should have to pay to bury their child, together we urge the Prime Minister to end this delay and act now.

Signed,

Carolyn Harris MP (Lab, Swansea East)
Kate Lee, CEO, CLIC Sargent
Paul Gerrard, Director of Campaigns and Public Affairs, the Co-op
Sir David Amess MP (Con, Southend West)
Tonia Antoniazzi MP (Lab, Gower)
Chris Bryant MP (Lab, Rhondda)
Jenny Chapman MP (Lab, Darlington)
Tracey Crouch MP (Con, Chatham and Aylesford)
Judith Cummins MP (Lab, Bradford South)
Chris Davies MP (Con, Brecon and Radnorshire)
David T C Davies MP (Con, Monmouth)
Ian Duncan-Smith MP (Con, Chingford and Woodford Green)
Susan Elan Jones MP (Lab, Clwyd South)
Chris Elmore MP (Lab, Ogmore)
Neil Gray MP (SNP, Airdrie and Shotts)
David Hanson MP (Lab, Delyn)
Sharon Hodgson MP (Lab, Washington and Sunderland West)
Gerald Jones MP (Lab, Merthyr Tydfil and Rhymney)
Stephen Kinnock MP (Lab, Aberavon)
Ben Lake MP (PC, Ceredigion)
Tim Loughton MP (Con, East Worthing and Shoreham)
Jessica Morden MP (Lab, Newport East)
Albert Owen MP (Lab, Ynys Môn)
Jess Phillips MP (Lab, Birmingham Yardley)
Paula Sherriff MP (Lab, Dewsbury)
Karin Smyth MP (Lab, Bristol South)
Nick Smith MP (Lab, Blaenau Gwent)
Jo Stevens MP (Lab, Cardiff Central)
Nick Thomas-Symonds MP (Lab, Torfaen)
Jon Arnold, Chief Executive, Tiny Tickers
Julie Bentley, Chief Executive, Action for Children
Henny Braund, Chief Executive, Anthony Nolan
Zillah Bingley, Chief Executive, Rainbow Trust Children’s Charity
Kate Collins, Chief Executive, Teenage Cancer Trust
Kathy Evans, Chief Executive, Children England
Sue Farrington Smith MBE, Chief Executive, Brain Tumour Research
Andy Fletcher, Chief Executive, Together for Short Lives
Frank Fletcher, Chief Executive, Ellen MacArthur Cancer Trust
Roger Gale, Chief Executive, Child Funeral Charity
Ashley Gamble, Chief Executive, Children’s Cancer and Leukaemia Group (CCLG)
Shaykh Ibrahim Mogra, Imam
Will Jones, Chief Executive, Brainstrust
Harun Khan, Secretary General, Muslim Council of Britain.
Jon Levett, Chief Executive, National Association of Funeral Directors
Chris Lewis, Founder, Chris’ Cancer Community
Sarah Lindsell, CEO, The Brain Tumour Charity
Dhivya O’Connor, Chief Executive, Children with Cancer UK
Blair Papwoth, Chief Executive, SimPal
Stephen Richards, Chief Executive, Solving Kids’ Cancer
Zack Pemberton-Whitely, Patient Advocacy Director, Leukaemia Care
Steven Wibberley, Chief Executive, Cruse Bereavement Care

Carolyn Harris MP has written here about why the Fund is so important, and you can read more on CLIC Sargent’s website.

Need help now?

Email khadijha@brainstrust.org.uk to find out how little brainstrust can support you and your family. We’re here to support you for as long as you need us.

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Children and families get together in SheffieldBrain News
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Eat to OUTSMART Cancer – A Jenny Phillips workshopBrain News, Patient & Carer Events, Uncategorized

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