Children and Young People Cancer Taskforce launched to save lives

Top clinicians, leading cancer charities and the government join forces to tackle childhood cancer.

Experts to explore how to improve treatment, detection and research for cancer in children.

Taskforce will unite different groups with the common goal of saving lives and reducing the long-term impact of cancer.

Clinicians, charities, patient groups and the government are on a joint mission to combat childhood cancer through a new taskforce launched today.

The Children and Young People Cancer Taskforce, to be chaired by Dame Caroline Dinenage MP, aims to improve how we detect, treat and care for children with cancer, and will discuss how to save lives and deliver world-leading cancer services.

While rare cancer is the leading cause of death in children aged 1-14 and one of the biggest causes of death in young people in the UK, more children are surviving than ever before, but the long-term impacts can remain significant.

The taskforce presents an opportunity to act and will consider genomic treatments, new diagnosis tools, research and innovation.

Health and Social Care Secretary, Victoria Atkins, said:

Discovering your child has cancer is among the worst news a parent can receive. Thanks to the remarkable progress in treatment and research survival rates are higher than ever however even then life changing consequences can remain.

This taskforce will help bring together world-leading experts and those who have dedicated their lives to fighting cancer to discuss how we can go further faster and to drive progress in cancer care for children and young people.

I am pleased we have such a respected figure as Dame Caroline leading the discussions and we look forward to working with all those on the taskforce to make child cancer care faster, simpler and fairer for all.

Fairness was also the theme of this year’s World Cancer Day on Sunday, which shone a light on inequalities in cancer care across the globe.

Through targeted lung cancer screening focusing on deprived areas, and prostate cancer screening trials with an emphasis on black men, we’re targeting the disparities that exist at home, making sure everyone can access first class cancer care.

Tireless campaigner on childhood cancer Dame Caroline Dinenage will bring her knowledge, experience and dedication as well as her reputation as an exceptional parliamentarian, to her role as chair.

Under her leadership the taskforce’s areas of focus will include:

• DNA testing and treatment - ensuring children and young people get access to high-quality personalised therapies, new treatments and personalised medicines are more readily available and the offer in the devolved administrations is examined.
• Detection and diagnosis – giving children the best chance to beat cancer through earlier diagnosis, improving training, exploring how AI can further support the workforce and raising awareness so people come forward sooner.
• Investment in research and innovation – improving the targeting of research funding, reviewing children’s access to clinical trials, gaining greater access to data - including potential data-sharing arrangements with Australia - to inform future therapies and treatments in England, and encouraging teams to consider innovative solutions.

Chair of the Taskforce, Dame Caroline Dinenage, said:

A few years ago, I met Charlotte Fairall, whose daughter Sophie had died from Rhabdomyosarcoma. She identified a number of improvements, big and small, that would have made a difference.  Since then we have met with experts from a range of fields, as well as numerous other parents. 

It’s an honour to be asked to chair the Children and Young People Cancer Taskforce, bringing together key figures who can make progress across three key areas; genomics, detection and diagnosis, and research and innovation.

There is an abundance of expertise and enthusiasm amongst researchers, clinicians and campaigners. My role is to harness this energy to drive action to improve outcomes for children and young people with cancer.

Minister of State for Health, Andrew Stephenson, said:

Learning that your child has cancer is absolutely devastating and any parent will rightly expect that everything possible is done to help their child in the event of such a heartbreaking diagnosis.

The fight against cancer takes place on many fronts, from groundbreaking research to diagnosis and innovative treatments. That’s why we’re bringing together some of the best minds - and pooling a wide range of knowledge and experience - to take action to improve outcomes for these cruel cancers.

Structured meetings to drive forward progress will be held with a mix of experts and senior figures from the Department of Health and Social Care, NHS England, the Office for Life Sciences, as well as appointees from the wider clinical community.

The taskforce launch coincides with World Cancer Day, which this year is themed around closing the care gap and eradicating differences in cancer care caused by geography, income, education and discrimination.

Here, the government is pioneering ways to improve equality in diagnosis and treatment. A targeted lung cancer screening programme designed to catch cancer sooner or prevent it altogether and focused on more deprived areas, was rolled out last year, with screening taking place in mobile units parked in convenient places - such as supermarket car parks - to ensure easy access.

The government also recently joined forces with Prostate Cancer UK to unveil a £42 million screening trial to find ways of detecting country’s most common male cancer earlier. With one in four black men developing prostate cancer at some stage in their life - double the risk of other men, 1 in 10 of the men invited to participate in the trials will be black men. Participating men in the screening trial will be aged 50 to 75, with black men eligible from the lower age range of 45 to 75.  

The Children and Young People Cancer Taskforce is being coordinated in partnership with charities including CRUK, the Teenage Cancer Trust, Young Lives vs Cancer and the Children’s Cancer and Leukaemia Group.

Founder of Sophie’s Legacy, Charlotte Fairall, said:  

Through the collaborative efforts of Dame Caroline Dinenage and myself, we have tirelessly pursued meaningful change for children and young people battling cancer.

In memory of the inspiring Sophie Fairall, whose courageous spirit and heartfelt bucket list ignited our mission, we’ve worked diligently over the past two years to transform her dreams into impactful change.

We’re hopeful this task force will spark the vital changes needed for children like Sophie to survive cancer and lead fulfilling lives free from the burdens of treatment impacts.

Chief Executive Officer at Teenage Cancer Trust, Kate Collins, said:

We welcome the launch of the Children and Young People Cancer Taskforce and we are looking forward to working alongside other experts to help address some of the challenges young people with cancer face.

Cancer is different when you’re young. It can be harder to get a diagnosis because symptoms can often be mistaken for another illness, and research into this age group can be limited, meaning there are fewer clinical trials available for them.

There is a lot to do to ensure that the needs of this age group are fully represented. By working in partnership and using our expertise, we are helping to ensure that teenagers and young adults continue to receive the best possible care and support.

Chief Executive at Young Lives vs Cancer, Rachel Kirby-Rider, said:  

It’s a positive step that children and young people with cancer’s unique needs are getting the focus they deserve with the setup of a dedicated Children and Young People Cancer Taskforce.   

Alongside their health, cancer can completely disrupt a young person’s life both during and beyond treatment, from education, to mental health and finances. It’s reassuring that as well as improving treatment and research, the Children and Young People Cancer Taskforce aims to transform care and reduce the long-term impacts of cancer. It’s crucial all children and young people (0-25) get the care and support they need to face all the challenges cancer brings.  

Young Lives vs Cancer is dedicated to amplifying the experiences of those we support. By coming together in collaboration through the Children and Young People Cancer Taskforce, we hope charities, clinicians and government will drive the changes children and young people with cancer need to improve their experiences and outcomes, and work towards a long-term national strategy for young cancer patients.

Chief Executive of Children’s Cancer and Leukaemia Group, Ashley Ball-Gamble, said:

The establishment of the Children and Young People’s Cancer Task Force is a vital, and welcome, step forward in improving outcomes for children and young people with cancer. 

Cancer in children and young people is different to cancer in older adults, and patients and their families have unique needs that can only be addressed by a dedicated, and specific, approach. The new Task Force offers a unique opportunity for charities, clinicians, patients and families, and government to come together and act collaboratively on some of the biggest challenges - and opportunities - facing us, as we work to improve diagnosis, treatment, care and survival.

Executive Director of Research and Innovation at Cancer Research UK, Dr Iain Foulkes, said:

Over the last five decades, research has helped transform survival for children and young people with cancer. But progress has stalled. Too many young lives are still being lost, and those who do survive often experience serious long-term side effects as a result of their treatment.

Cancer is different in children and young people and dedicated efforts are needed to develop new drugs and better ways to detect and diagnose these cancers. Cancer Research UK is the largest charitable funder of research into children and young people’s cancers in the UK and we are committed to meeting these urgent needs, investing more and working with others to advance progress.

We welcome the government’s commitment to this important mission and look forward to understanding more of the detail of the government’s mission and plans. It’s crucial that we collectively continue to push for a future where more children and young people survive their cancer and go on to enjoy a good quality of life.

BACKGROUND

• Child cancer survival rates have more than doubled since the 1970s but the long-term impacts can include physical or learning disabilities, ongoing health needs, infertility and impact on education and employment.