Leading cancer charities launch ambitious vision for children and young people with cancer

Four of the UK’s leading children’s and young people’s cancer charities, Young Lives vs Cancer, Teenage Cancer Trust, Ellen MacArthur Cancer Trust, and Children’s Cancer and Leukaemia Group (CCLG), have today (Thursday 13 June) launched The North Star, an ambitious vision for a better future for children and young people with cancer.

In 2022, the charities, together with Dartington Service Design Lab, began an in-depth programme of qualitative and quantitative research, with the aim to transform cancer care for children and young people. This solid evidence base, which includes the lived experience of over 1,500 young people, parents, carers and siblings, now provides the foundation to develop groundbreaking solutions and inform decisions that achieve greater outcomes for young people and their families affected by cancer.

Published today, the State of the System report focuses on the needs and wellbeing of children and young people with cancer and their families and identifies the gaps in support and areas which need vital transformation.

Key findings from the State of the System report include:

• Qualitative research participants described their experience leading up to diagnosis as being marked by stress and anxiety, with 48% of the young people, parents and carers surveyed wanting more support to understand their or their child’s diagnosis.
• During treatment, financial and practical pressures further compound the emotional toll on families. 43% of survey respondents said they received support related to financial help or benefits, but 38% said they needed more support and 12% said they didn’t receive any.
• Unsurprisingly, young people undergoing cancer treatment, and their parents, carers and siblings, report poorer wellbeing and quality of life, and higher cancer-related needs than those after treatment.
• After treatment the sharp decline in signposting to relevant support leaves individuals feeling isolated and struggling to access the necessary support.
• Young people who were treated for cancer have 36% higher anxiety than the population at large, and this remains true more than six years after treatment.

The North Star is an ambitious vision informed by the State of the System report. It sets out what the system should look like to support the needs and wellbeing of children, young people and their family at all stages of their experience including once treatment has finished.  A vision where:

Every child and young person facing cancer receives care that’s tailored to them. They feel informed and in control, and along with their families can make knowledgeable decisions about their care and future. They feel empowered every step of the way, facing no gaps in support or barriers to access. They have everything they need from the beginning of their cancer journey, during treatment and for as long as they need it afterwards.

Rachel Kirby-Rider, Chief Executive at Young Lives vs Cancer said: At the heart of all of this are children and young people with cancer and their families. They’re being failed by the systems around and deserve better. We want to build a better future for children and young people with cancer, one where practical matters are taken care of such as transport, paying bills, and safe and secure housing, and where the wellbeing needs of the whole family are recognised and addressed for as long as they need.

“Our North Star vision is a huge and ambitious mission. Together, as four organisations, we’re a force to be reckoned with, but we can’t achieve this alone.  From other charity partners, to NHS colleagues and governments across the UK. Anybody who is a part of the networks and systems that surround children and young people with cancer have a role to play in this, and I’m looking forward to coming together to make this happen.”

Kate Collins, Chief Executive of Teenage Cancer Trust, said: “This new research provides us with essential data to drive forward change. The fact that young people who are or have been treated for cancer have higher anxiety than the population at large comes as no surprise, but we mustn’t forget how vital it is to ensure that young people have access to dedicated mental health support during and after their treatment. This is why we continue to call on all UK Governments to provide dedicated funding to make sure every young person with cancer can access support from specialist psychologists.

“It also comes through loud and clear that young people and their families have information needs that are not fully being met so there is more for us to do to get our information resources out there to every young person that receives a diagnosis.

“Our North Star is a bold and ambitious for the future of young people’s cancer care. We must continue to work together to tackle these challenges and ensure the best outcomes for young people with cancer.”

Ashley Ball-Gamble, Chief Executive at Children’s Cancer and Leukaemia Group said:  “The North Star will illuminate the path towards a brighter future for children and young people with cancer and their families, informing and influencing our strategic thinking.

“Now that we know where children and young people and their families are being let down, we can, both individually and collectively, begin to address any gaps in the system.

“We look forward to working with our partners to ensure the unique needs of children and young people with cancer are being met and that they feel empowered and supported from the point of diagnosis right through to post-treatment. We all have our individual responsibilities and roles to play, but we know that to achieve change – real meaningful change – we are better together.”

Frank Fletcher, Chief Executive at Ellen MacArthur Cancer Trust said: “This is a pivotal moment for children and young people with cancer. For too long too many young people and their families have fallen between the gaps and missed out on getting the vital support they need when they need it during the most worrying and stressful time imaginable. Together, we are committed to forcing this change.

“We welcome the launch of the North Star and look forward to the role we can play in ensuring all young people and their families have access to timely and appropriate post-treatment information and services that positively impact their wellbeing and futures.”

This is transformational, vital change that will support the unique needs of children and young people with cancer. The impact is wide ranging and ground-breaking but all those involved need to play their part. For more information click here 

Download a full version of the State of the System HERE

For more information please contact Alison Millar, Media and Communications Manager at Young Lives vs Cancer on 07775 723 755 or email alison.millar@younglivesvscancer.org.uk