- Name Young people's reference group
- Provider CLIC Sargent
CLIC Sargent, the support charity for young cancer patients, recently celebrated 10 years of its award-winning participation service. The service puts children, young people and parents' voices at the heart of the charity's service delivery and development, shaping and improving its UK-wide support services.
The celebrations provided a chance to share stories of participation across the years, including the achievements of the charity's young people's reference group (YPRG).
The YPRG is made up of young people aged 16 to 25 who meet every two months, providing peer-to-peer support. For young people, having cancer can rob them of their confidence and independence, and some will arrive for their first YPRG session feeling uncertain of what to expect. Simply being with other young people who have been through similar experiences makes a huge difference.
The group also gives young people who have been affected by cancer the chance to shape the support services that CLIC Sargent offers. Participants feed back on various projects from across the charity, helping to shape policy and awareness campaigns, and give invaluable insight into what it's like to be a young person diagnosed with cancer.
The YPRG has helped deliver important changes to CLIC Sargent's services. One of these is the development of a new way of measuring the support children and young people need and how their care plans are completed by social care teams. Members of the YPRG identified that they weren't always fully aware that these assessments actually took place and didn't necessarily feel a sense of ownership over them.
Through close consultation, young people helped to develop the new "Support Star" - a visual tool which plots the key areas that young people told CLIC Sargent were impacted in their life, including emotional wellbeing, managing side effects, money, relationships and social life, and goals and plans. The result has been a much more flexible tool that can be used at different stages of a young person's journey and help to inform CLIC Sargent's social care teams about where their support should be focused.
Over the past decade, members of the YPRG have had a clear impact, and a member now sits on the charity's board of trustees. Young people helped to write the job description and interviewed candidates alongside the chief executive and chair of CLIC Sargent. Jason Loo, a member of both the YPRG and the former Children and Young People's Advisory Group, was the first trustee to be appointed with a lived experience of cancer as a young person. This was followed by the appointment of Harry Howard, also a former member of both groups, in February 2017.
CLIC Sargent's participation service has twice been awarded the Gold Hear by Right Award from the National Youth Agency.
By Rebecca Horder, participation lead, CLIC Sargent
By Kat, 23, Sutton
After my cancer diagnosis I was unwell, isolated, and unsure of my place in the world. I spoke to my CLIC Sargent social worker about my desire to get involved in something; my need to do something that matters and she suggested the charity's young person's reference group (YPRG). It's by no means an exaggeration to say that joining YPRG has changed my life.
At my first meeting I threw myself in, and it was so rewarding. For the first time since my diagnosis, I felt like my voice mattered. I was speaking with my peers about things that are important to us, and in sharing our opinions we were helping everyone.
I made friends immediately and I loved the welcoming, accepting atmosphere. After spending so long at home and being too poorly to go out with my friends, it was amazing to be among peers.
I feel like since getting involved with YPRG, my life has taken on a new course. I'm involved in advocacy and looking for as many opportunities as possible. YPRG has given me something priceless: YPRG has given me a purpose.