The research shows that across the entire cancer journey, from before diagnosis through to post treatment, there’s a lack of mental health support. And it comes with long-lasting, damaging impact.
Receiving a cancer diagnosis can be traumatic and there is rarely enough time or headspace to process the information. This is made worse for some, who find it challenging to access the support they need from healthcare professionals.

“I had to seek external therapy that wasn’t provided by the hospital to cope with medical anxiety” – Young person

The lack of mental health support continues to have an impact through to post treatment. Anxiety levels for young people who were treated for cancer are 36% higher than the population at large, and this remains true more than six years after treatment.

“I found the lack of aftercare disappointing. To go from years of being closely monitored and cared for, to just being entirely on my own was terrifying.” – Young person

We can help change this. We’re experts in providing vital psychosocial support throughout cancer treatment, end-of-life, and bereavement. The research shows us where improvements need to be made and what needs to be a priority.

We’ll work to fill gaps within our own organisation; enhancing and repositioning our social work provision wherever we can to better meet the needs of children and young people with cancer.
But we know this isn’t a problem we can fix alone. The responsibility also lies outside of Young Lives vs Cancer; within the wider system of support. Some things we just can’t transform ourselves. But we can influence and educate the system, working with key groups such as the NHS, social care providers, education, and welfare to make sure these areas are improved; using our research as an evidence base to guide change.

The research confirmed that the financial pressures that come with a cancer diagnosis have a direct impact on mental health. We have established credibility and experience in influencing policy to drive national change. So, we’ll continue to lead and ignite shifts within the system to provide better financial support to help with the daily struggles and costs that families experience because of cancer – travel costs, bills, debt. Their mental health shouldn’t have to suffer because of these extra concerns on top of their cancer.

The research highlighted the needs of people within marginalised groups not being met. Wellbeing needs are consistently higher for those such as LGBTQ+ young people and young people and families from minoritised ethnicities. However, once again their unique needs are not recognised and there isn’t enough mental health support provided. Support isn’t equitable and children, young people and families are not met at their level.

Equity is a priority for all of us at Young Lives vs Cancer.

We know there’s always work to do and improvements to be made, so we’ll continue to scrutinise our practices, take the time to listen and evolve our ways of working and services. But we know that this is an issue that extends beyond the realms of our own charity. So, we’ll continue to raise the voices of children and young people from marginalised communities; to raise awareness of their experiences and hold those across the system to account to be responsible for making change happen within their areas of support.

There is more to learn on this. Although in-depth, the research report is just the beginning of our deep dive into the experiences of children and young people with cancer. We’ll continue to learn and understand the barriers these communities face and work with them to make lasting improvements to the state of the system for marginalised groups.

The report highlights a lack in support when it comes to bereaved families too. Unsurprisingly, they reported worse wellbeing across all measures. At a time when their wellbeing should be priority, the systems that surround them continue to let them down. 34% of bereaved parents and carers saying they didn’t receive support around bereavement.

“There was a lack of help and support after I had lost my son. I was totally alone and felt that life was not worth living.” Parent/carer

Our specialist social workers are there to support families in many ways before a child dies and during bereavement. This includes planning ahead for the time families have left with their child, helping parents deal with the immediate priorities like letting people know what’s happened, to completing the death certificate, and getting a Young Lives vs Cancer compassionate grant to help with funeral costs.

The research tells us there’s still work to be done in this area. We’ll continue to review our work in bereavement to understand any gaps in our provision that we can fill ourselves. We work closely with and signpost to a number of bereavement charities; we can use the research report to guide conversations with them and work collaboratively to improve our collective work in this area.

The research tells us that bereaved families also look for help being connected with others who are also experiencing the loss of a child. Our Facebook group for bereaved parents offers a welcoming, friendly space to share thoughts and advice. This is something we can learn from and develop in collaboration with our partners; learning from each other and building bigger communities of support for those who seek it.