Voice and Engagement
At Young Lives vs Cancer we make sure we listen to the voices of children and young people with cancer, and their parents. We believe those with first-hand experience of cancer are the best people to tell us what it’s like and what needs to change.
Our Voice and Engagement service launched in 2008, then called Participation. It’s been awarded the gold standard Hear by Right award from the National Youth Agency twice, something we’re really proud of!
Some of our achievements include the establishment of children, young people and parents advisory groups, the creation of our Shout Out! magazine for seven to 13-year-olds, Facebook groups for young people and parents, the appointment of trustees with a lived experience of cancer, and including young people and parents in staff inductions and on recruitment panels.
We celebrated 10 years of our service with a dedicated ‘Participation Week’ in November 2018, where children, young people, parents and staff shared their participation stories. Here’s just a few:
Dawid, 12, is a member of Young Lives vs Cancer’s Children’s Advisory Group, which brings together children aged seven to 15 from around the UK to share experiences, meet others in a similar position and shape our work. Dawid was diagnosed with a brain tumour when he was six. “My diagnosis was difficult as after it nothing was the same again. Because of what happened to me I had to start from beginning, learn how to walk, talk and even interact with people.
“I used to be very popular at school, but I think my friends found it hard when I changed and sometimes didn’t understand my behaviour. Coming to the Children’s Advisory meetings let me meet other children like me, who also go through similar problems and because we don’t look at our disabilities we made good friends. I also learned a lot about cancer and how it affects others so I don’t feel isolated anymore.”
Kat, 23, joined Young Lives vs Cancer’s Young Person’s Reference Group (YPRG) after she was diagnosed with cancer in 2017. The group, made up of young people aged 16-25+, meets every two months, providing invaluable peer-to-peer support with those who have had similar experiences:
“Last year I was unwell, isolated, and unsure of my place in the world. What made it unbearable was the feeling that I could no longer contribute anything worthwhile. Charlotte, my social worker, suggested YPRG – and joining it changed my life.”
“For the first time since my diagnosis, I felt like my voice mattered, talking with my peers about issues important to us. And in sharing our opinions, we were helping everyone. YPRG has given me something priceless: a purpose.”
Tim became involved in Young Lives vs Cancer’s participation service after we helped him when his son Michael was diagnosed with cancer just before his third birthday in April 2014.
Tim spoke about his experiences in parliament on behalf of Young Lives vs Cancer and starred in our Kid Santa Christmas campaign 2018. He also established the ‘Mind the Chaps’ Facebook group; a space for dads to connect with other dads whose children have been diagnosed with cancer:
“They are really good at offering us opportunities to turn a hideous negative into a positive. After your child’s treatment finishes, you really do want to find a way to give back to charities that were there for you at your worst time. Being involved in activities is the perfect way.”
Meet the artist
The stories above (and many others!) were illustrated by Sophie, a young person we supported. Watch the video below to hear Sophie talk about her experience at Young Lives vs Cancer.
Find out more
To find out how you can get involved in participation at Young Lives vs Cancer, please email firstname.lastname@example.org.