Having a positive impact
Luci joined the Cancer Research UK for Children and Young People Insights Panel in Autumn last year. Since then, the panel have provided their valuable insights on 14 projects from teams across CRUK and they also fed into the new Research Strategy for Great Ormond Street Hospital Children's Charity.
Here Luci shares why she joined the panel and what it’s like to be involved.
What motivated you to get involved?
"I wanted to join the panel to use my experience of having cancer as a young person to have a positive impact. I’m a long-term survivor of cancer. I was diagnosed with Hodgkin’s Lymphoma 30 years ago when I was 16, so my personal experience has given me an awareness of the far-reaching effect that cancer, and the way that it is treated in teenagers, can have into adulthood. I didn’t have the opportunity to share my insights at the time. I probably wouldn’t have felt ready and able to do so at that age or whilst going through treatment, so it has been great to have the opportunity to do so now.
It’s been really empowering for me to be involved. My hope for the future is that the views of people affected by cancer can be an integral part of this work and can have a positive impact for future generations."
What have you done to help shape our work?
"Every 2 months we’re sent an email detailing two to four projects and asked to provide our views and feedback on them. I work full time and have a busy family life, but we’re always given plenty of time to complete consultations, so I find it easy to fit this in around everything else that I do.
The consultations are always varied and interesting – for example, making sure information for patients is clear and makes sense, giving feedback on new apps, and giving views on the barriers for children and young people taking part in clinical trials and biobanking. These are just a few of the tasks I’ve done recently!
We are given feedback on consultations that we have done, so if any changes are made due to our responses or ideas followed up, then we get to find out. This really does help us to feel like our views and experiences have an impact."
Why is it important for people affected by cancer to help shape our work?
"It’s important to me to have a voice. I think that having lived experience of being a young person with cancer gives me a unique insight. It’s an experience that can’t be fully understood by people that only know about childhood cancer in theory or second hand.
It’s harrowing to be a young person with cancer. I hope that I can use my experiences, in a small way, to help make a positive difference to young people going through the same experience now or in the future."
Cancer Research UK for Children and Young People Insights Panel
We'll be recruiting new members to join Cancer Research UK's Children and Young People Insights Panel in the new year. Become a member of our network and we’ll send you our fortnightly newsletter which lists opportunities to get involved, including our Cancer Research UK for Children and Young People Insights Panel.
You can find out more about our plans to overcome the challenges holding back progress and ensure more children and young people survive cancer with a good quality of life.