As uncertainty in UK Government continues, Young Lives vs Cancer says implementation of the National Cancer Plan must be prioritised and changes to leadership in key government departments cannot be a barrier to its progress

New research found the impact of cancer on children and young people has not improved across key areas in the past three years.  

With imminent changes in Government leadership, Young Lives vs Cancer is committed to ensuring the National Cancer Plan for England is implemented to provide vital support to children and young people diagnosed with cancer.  

In February, the UK Government committed to delivering a National Cancer Plan for England and, in a landmark first, included a section dedicated to providing tailored support and care for children and young people with cancer. This includes the introduction of a Travel Fund, in response to Young Lives vs Cancer’s campaign, to support young people and families with costs to travel to treatment as well as improved psychosocial support, to help with impact of cancer on their mental health and well-being.  

In 2023, Young Lives vs Cancer and partners commissioned research by Dartington Service Design Lab and findings, later published in the State of System report, showed that cancer has a lasting negative impact on children and young people’s wellbeing with gaps in support – including financial and mental health support – both during and after treatment. Today, results from a survey of almost 500 young people and families who have experienced cancer in the past five years indicates that nothing has changed. 

The State of the System research found 13% of young people who responded reported low life satisfaction, compared to just under 5% of the general population (Office of National Statistics). In the new survey, this figure has risen to 22%, indicating there is an increase in young people with cancer experiencing low life satisfaction. Similarly, within the State of the System research, 46% of young people reported high levels of anxiety. This is mirrored in the new research with 44% of survey respondents reporting high levels of anxiety.  

The charity also found that parents, carers and siblings are more than twice as likely as the general population to experience high levels of anxiety, with over 50% reporting high levels of anxiety in the new survey. 

The charity says today’s findings indicate that the impact of cancer on children and young people remains as challenging as ever and the support set out in the National Cancer Plan for England must be prioritised.  

Rachel Kirby-Rider, Chief Executive at Young Lives vs Cancer, says: “Earlier this year the UK Government launched the National Cancer Plan for England and with it, a landmark first with a dedicated plan for children and young people with cancer. In this current uncertainty, one thing remains certain; children and young people are still struggling with the impact of cancer. No matter what happens, no barriers can stop children and young people with cancer getting the support they need. 

“Receiving a cancer diagnosis at any age is tough but it is incredibly hard for children and young people who often spend months if not years in hospital away from their friends and family. Today’s findings show this can have a huge impact on their wellbeing. 

“Through the Children and Young People’s Taskforce we have worked closely with the UK Government to shape what support the National Cancer Plan for England needs to deliver to help children, young people and their families face these challenges. At this uncertain time, we will be working closely with the Government to make sure the needs of those we support continue to be prioritised and the Plan is implemented.” 

ENDS     

Notes to editors    

For more information, an interview or images, please contact  mediarelations@younglivesvscancer.org.uk      

About cancer in children and young people    

Every day, 12 children and young people in the UK are diagnosed with cancer. Treatment normally starts immediately and can last for up to three years. It is often given many miles from home, in one of the 19 principal children’s cancer treatment centres across the UK. On average children and their families face £700 in extra costs a month during treatment.  

Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK.    

About Young Lives vs Cancer  

Young Lives vs Cancer is the leading UK charity supporting children and young people with cancer (aged 0–25) and their families.  

From the point of diagnosis, our specialist social workers provide personalised psychosocial support, whether in hospital, at home or on the end of the phone. Based in the 19 principal children’s cancer treatment centres across the UK, they work closely with doctors, nurses and other NHS professionals as an integral part of the team caring for children and young people with cancer. They provide practical, emotional and financial support and help with education and employment challenges. Young Lives vs Cancer provides grants and helps families access the benefits and other support they are entitled to. Our care teams also provide bereavement support.  

Our 10 accommodation centres (Homes from Home) across the UK offer families a free place to stay nearby to the hospital to ease the financial burden of travel and keep families together.    

Through extensive research and campaigning for policy change on the issues that matter most to them, we raise awareness of children and young people’s experiences and champion their voices with politicians and decision-makers across the UK to help bring change.  

Young Lives vs Cancer relies on charitable donations to fund their vital work supporting children and young people facing cancer and their families across the UK.   

Our helpline is open from 10am to 4pm, Monday to Friday, on 0300 303 5220, via live chat at www.younglivesvscancer.org.uk or by email at getsupport@younglivesvscancer.org.uk.  

For more information, visit www.younglivesvscancer.org.uk.     

About the State of the System Report 

In 2022, Young Lives vs Cancer, Children’s Cancer and Leukaemia Group, Ellen MacArthur Cancer Trust, and Teenage Cancer Trust set out as a collective group of four charities to fully understand the needs and experiences of children and young people with cancer. Together they joint-commissioned Dartington Service Design Lab to carry out an in-depth programme of research.  

This research, conducted in 2023, combines evidence and insight with the experiences of over 1500 young people, siblings and parents and carers whose lives have been affected by cancer in children or young people. In June 2024, the State of the System report was produced, providing a robust and insightful evidence base for change. From that research they have created a North Star Vision. 

Read more: Leading cancer charities launch ambitious vision for children and young people with cancer – Young Lives vs Cancer 

About Dartington Service Design Lab 

Dartington Service Design Lab is a research and design charity focused on using and generating evidence and design in innovative ways to help those working with children and young people have a greater impact. 

We work at the intersection of evidence-informed practice and user-centred design. We have deep respect for both evidence and the experience and expertise of practitioners, young people and families. We think public systems and services can be more impactful when they are considered together. 

We also work at the intersection of public system reform and service design and improvement. System change efforts that lose sight of the services children and families use will have limited impact. Conversely, services designed without consideration of wider system conditions are unlikely to succeed. So we think systems change and service design should go hand-in-hand. 

For over 60 years, Dartington has been at the forefront of designing better futures for children and young people, working across the public and voluntary sectors to help give children the best start in life, grow up safe and cared for, and have good mental health and wellbeing. We take an integrated approach, bringing together evidence, design, and people to create systemic change. 

Note to sub editors  

Always use our name in full: Dartington Service Design Lab and write it with the D,S,D and L capitalised. Dartington Service Design Lab should be not be abbreviated but can be shortened to “The Lab”.