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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

Closeup of a CT scan with brainbrainstrust elephants