Children and young people with cancer, their parents, and MPs have come together in Westminster to officially launch the All-Party Parliamentary Group on Children, Teenagers and Young Adults with Cancer (APPG CTYAC) and to strengthen their voice in Parliament.
The launch on 11 October, saw children, young people, families, Parliamentarians, charity representatives and high-level influencers come together and speak about what matters to young people with cancer.
Recent developments in cancer care have recognised that young people with cancer have unique needs, but progress is still needed in cancer services to improve diagnosis, access to age-specific care and post-treatment support for this patient group.
One of the people who spoke at the APPG CTYAC launch was Ruth Munglani, 24 from East London, who was diagnosed with Ewing's Sarcoma, a rare form of cancer, at just 21 years old.
Ruth said: "Now that I have been through cancer and am living with the side effects, I know just how much of a priority childhood, teenage and young adult cancer needs to be.
"I am lucky enough to still be here today, so I feel I have a responsibility to speak up for all the young people who are and will be affected by cancer.
"I am really excited by the potential the Group presents for focusing on young people with cancer.
"When Teenage Cancer Trust offered me the opportunity to meet with the All-Party Parliamentary Group and speak today about my experience, I couldn't turn it down. It was a chance for me to get young people's voices heard, and to positively enact change for young people with cancer."
Tilly Somervell, who was diagnosed with thyroid cancer at 13 and is now in remission, said:
"With the best will in the world, if you are a civil servant sitting in Whitehall you can’t possibly know what it’s like to be a 15-year-old girl with cancer living in Essex.”
Despite everything, Tilly said cancer had given her a gift. "It has made me strong and maybe because of that I can help to change things for other people. Because I’m one of the lucky ones who gets to tell their story and talk about the services and how well they work, or not, for people like me I hope that I can make a difference...certainly if people like you listen to people like me then I’m pretty confident we can make things better for everyone."
Tilly’s mum, Jo Palmer-Tweed, told the group about the gaps CLIC Sargent had plugged, but added: “They were gaps that should never have appeared in the first place.”
Thangam Debbonaire MP, official Chair for the Group, said: “Having met Ruth and Tilly today, and heard them share their experiences of going through cancer, what became so clear to me was the unique impact of having cancer so young and the need to amplify young cancer voices in Parliament. The NHS has recognised the importance of supporting children, teenagers, and young people as distinct groups when it comes to cancer treatment and this APPG will be valuable for raising awareness in Parliament and lobbying government for better support and care.”
As experts in children and young people with cancer, Teenage Cancer Trust and CLIC Sargent have teamed up to provide administrative support as the Secretariat for this pioneering Group. The charities are calling on MPs, children, young people and families to get involved, share their ideas and experiences to support the Group's mission and join the conversation by using #YoungCancerVoices.
For further information on the work of the Group visit: clicsargent.org.uk/youngcancervoices
To contact the All-Party Parliamentary Group for Children, Teenagers and Young Adults with Cancer, email the Secretariat at APPG@clicsargent.org.uk
For more information, please contact Caroline Clancy on email@example.com or call 020 8752 2855.