By Pandora Patterson, General Manager of Research, Policy & Patient Programs
At Canteen, we understand that young people face unique challenges when it comes to cancer.
That’s why, when Cancer Australia embarked on the development of the Australian Cancer Plan to coordinate action and collaboration on the disease, we knew it was important for young people’s specific needs to be considered. With more than 35 years as the leading cancer support organisation for adolescents and young adults (AYAs), we wanted to offer our expertise and knowledge (informed by our world-leading research) to ensure AYAs and their families are represented in the 10-year plan and their voices are heard.
Our mission is to be in a young person’s corner with whatever support they need when cancer crashes into their world. That includes improving the health and mental health systems to ensure that young people with cancer get the medical and emotional support they need.
Some of the issues we are asking to be incorporated in the national cancer plan include:
Greater investment in online support services:
COVID-19 has changed many things in our lives. When it comes to delivering cancer services, the global pandemic saw Canteen accelerate and expand on a digital transformation that was already underway. While the delivery of support services online has been a success, and has even become a preference for many, we see the need to invest and bolster this transition to digital to fully capitalise on its benefits.
We need to ensure more clinical trials are available for young people. I have written in the past about how critical this is - it can be a matter of life and death. Presently, less than one in five AYAs diagnosed with cancer are participating in trials compared with almost one in two children, which means the survival rate in this cohort has unfortunately not kept pace with that of other groups. So, we would like to see increased investment in this area to increase the availability and accessibility of suitable trials for AYAs because we know this improves survival outcomes.
The importance of families on the cancer journey cannot be underestimated and they too need access to care and support. We have recommended that the Australian Cancer Plan recognises and responds to the needs of families to allow parents, children and siblings access to specialist cancer support services. This can happen through increased resourcing for existing specialist services, as well as offering education and training opportunities to upskill health providers.
Survivorship is another key area we’d like to see addressed in the plan. Young people often face challenges returning to ‘normal’ life immediately after their cancer is treated. The experience can have lingering physical, emotional and psychosocial consequences and can be a challenge for survivors, as well as their families. We know a specialised response is key.
Cancer is the leading cause of disease-related death for AYAs. End-of-life care can be hard to talk about, but we know that compassionate and honest discussion and planning can remove a lot of distress and anxiety. It can give AYAs a greater sense of control and help with the grieving process for families and friends. We would like to see end-of-life care better planned for and spoken about through the establishment of guidelines linking specialist doctors, palliative care teams and community -based support services.
These are just some of the issues we’d like to see included in the Australian Cancer Plan. You can read more details, as well as all our other recommendations here.