Those living with Type 1 Diabetes (T1D) have a right to be involved in their own health care or the health care of their child. Their real-life experiences and knowledge contributes to the improvement of clinical practice. Their involvement adds value to the shared decision-making processes of the Centre. Involving those living with T1D and the T1D community in research provides opportunities to ensure the research conducted and the outcomes achieved are meaningful, so that new models of care can be implemented and the benefits can make a difference to the lives of children and young people.
Lived experience underpins all our work within the Centre. Our Consumer Representatives, who work across individual projects as well as being embedded in our governance structure, share their experiences with our research teams so their voices can be considered, recognised, valued and create impact for not only our research, but for the children and families living with T1D in Australia.
Find out why Sophie, who has lived with T1D most of her life, came to be involved in our research as a Consumer Representative and what she finds the most challenging that research will hopefully change in the future.
Why are you so passionate about T1D research?
I was diagnosed with T1D over 20 years ago, at age four, so I can hardly remember life without it. Some people say that’s a blessing, but it also means I’ve never known anything other than finger-pricks, injections and the constant background management that T1D demands.
Over the years, I’ve watched technology evolve dramatically—from early CGMs that needed numbing cream and my parents holding me down for the large needle, to the almost painless devices we have today. The progress has been incredible, but there is still so much room for improvement across other areas to reduce the daily burden associated with living with T1D.
I’m passionate about T1D research and have been involved in numerous clinical trials over the years because I want the future generations – and those of us already living with T1D – to experience fewer limitations, less stigma and better support throughout all stages of life.
What’s it like being a Consumer Representative with the Centre?
Being a consumer representative has kept me closely connected to what’s happening in T1D research. I value being included in discussions, learning about new research projects and being able to contribute my lived experience in a way that genuinely shapes research directions. It means a lot to know that my voice – and the voice of others living with T1D – can help ensure that research focuses on the issues that truly matter in your day to day life.
An added bonus of being part of the T1DCAG is the relationships and genuine friendships we develop as members of the group. Relating to others with shared lived experiences makes us all feel a little less alone and provides connections we can reach out to at any stage, not just in the bimonthly meetings—whether to vent or discuss any T1D dilemmas we are experiencing. Having these connections are imperative for all people living with T1D to help them feel less alone and understood.
What do you hope will come from being involved?
I hope to help shape research that reduces the restrictions people living with T1D can face, creating a future where no one feels limited by their diagnosis and is free to reach their dreams. I also want to help build community understanding and awareness reducing stigma and easing the emotional and mental load that often accompanies life with T1D.
What have you been involved in with the Centre so far?
Over the past two years, I have been fortunate to act as a research buddy for transition and mental health projects and attend symposiums to hear about new research and share the consumer perspective. Being involved ensures that the lived experiences of people living with T1D shapes research priorities in meaningful ways.
What do you think are the biggest challenges of living with T1D that research could address?
In my experience I feel there are three major challenge areas where research could make a real difference:
1. Mental health:
Patterns of anxiety, depression and burnout are well-recognised among young people living with T1D, yet support has often been limited. Many of us navigate incredibly tough periods with little guidance, despite managing a condition that demands 24/7 attention – without down time. Research that strengthens mental health support and embeds it into routine care would make an enormous difference in quality of life.
2. Transition from paediatric to adult care:
The transition to tertiary hospital care can feel abrupt and overwhelming. At a time when young adults are finishing school, starting uni or work, possibly moving out of home and managing all their medications themselves, support often drops away. I experienced first hand the gaps in care after moving from a paediatric to adult tertiary hospital. Long waitlist, inflexible appointments and limited support during university left me managing T1D alone for over a year. Without proper medical and psychosocial support my mental health and diabetes control suffered. My story is not unique – many young adults fall through the cracks during this critical period. Research into improved transition pathways and access to multidisciplinary care including mental health support is urgently needed.
3. Stigma and misunderstanding:
There is still widespread confusion between type 1 and type 2 diabetes. I’ve heard comments ranging from “you should exercise more,” to “I’ll get diabetes if I eat that,” and even had a GP suggest I didn’t need a repeat script for insulin. These comments can be hurtful, dismissive and isolating even when you try to brush them off. Research that leads to effective, widespread public education could help reduce stigma, correct misconceptions and make life with T1D a little less isolating.