Four of the country’s leading cancer charities have set out a bold new plan for children and young people with the disease, as they call for better education along with equitable, personalised and consistent care.
The organisations in question include Young Lives vs Cancer, Teenage Cancer Trust, Ellen MacArthur Cancer Trust, and Children’s Cancer and Leukaemia Group (CCLG).
Research and vision
The vision for the future — dubbed The North Star — comes off the back of in-depth qualitative and quantitative research, featuring the experience of more than 1,500 young people, parents, carers, and siblings.
The State of the System report found that pre-diagnosis is marred by stress and anxiety — almost half (48%) of those surveyed wanted to better understand their or their child’s diagnosis.
Financial and practical pressures only further compound the emotional toll on families, with over two in five (43%) receiving financial aid but slightly less (38%) saying they needed more — one in 10 (12%) said they did not receive any.
The research also revealed the lack of post-treatment signposting, which left people feeling isolated and vulnerable.
The research base has helped build the vision for the future — a vision where every child and young person with cancer:
- Receives tailored care
- Feels informed and empowered to make decisions about their future
- Faces no gaps in support or access barriers
- Has everything they need from the start of their cancer journey, during treatment and for as long as they need it afterwards
Industry reaction
“Our North Star vision is a huge and ambitious mission,” said Young Lives vs Cancer’s CEO, Rachel Kirby-Rider. “Together, as four organisations, we’re a force to be reckoned with, but we can’t achieve this alone.”
Some of the areas specifically outlined that could benefit from more attention include marginalised groups along with mental health and bereavement support.
CCLG’s CEO, Ashley Ball-Gamble, added: “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.”
Frank Fletcher, CEO at Ellen MacArthur Cancer Trust, commented: “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.”
CEO at Teenage Cancer Trust, Kate Collins, concluded: “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.”
Image credit: iStock
