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, provide an opportunity for those experiences to be considered, recognised, valued and create impact on our research.
In this edition we find out why Rachelle, who cares for a daughter living with type 1 diabetes (T1D) in NSW, came to be involved in our research and what she finds challenging the most that research will hopefully change in the future.
What led you to become a Consumer Representative and why?
My daughter’s diagnosis with T1D came with endless medical forms that I completed in quiet moments sitting beside my then little 2 year old snuggled awkwardly into a huge hospital bed. One question asked, was the condition lifelong, the Doctor had ticked Yes.
Later, I was in queue at Centrelink to register for a Health Care Card and the sudden vulnerability, exhaustion and love was overwhelming, and then sustained at the realisation of taking our baby home from hospital.
It was that moment that I vividly recall making a promise to myself that I would commit to making life with T1D gentle for children with diabetes and their siblings. Diagnosis was in 2013 and I have kept my promise ever since.
What have you been involved in with the Centre so far?
My involvement with the Centre began in 2022 when a Breakthrough T1D post asked for carers and people living with T1D to join a research goal-setting workshop. I didn’t know much about the Centre, but I wholeheartedly welcomed the paediatric focus of the Centre, was already a champion of the Breakthrough T1D research pathway ideals and had met with local MPs for funding, and I was keen to bring my (non-diabetes) research background to help shape research towards what we need now and young people living with diabetes need in the future.
Impressed by the authentic involvement of community voices across all activities, my EOI to join the T1D Community Advisory Group (T1DCAG) and from there, the Management Steering Group (MSG) was accepted. Each Group has quarterly, virtual meetings whereby the T1DCAG invites a researcher to our meeting to present or gain community insight into their individual projects, and I am one of two community members represented in the Management Steering Group alongside Centre Directors and Principle Researchers.
Recently, I led the T1DCAG’s Priority Setting Workshop. This gave members an opportunity to come up with the top 6 research priorities for the community that were shared with the Centre’s MSG to be considered for inclusion in the Centre’s new 10 year strategic plan. I was also a panel member for the Community Panel Session at the Centre’s Research Symposium in August where I provided an overview of the 6 research priorities to attendees and share my lived experience with broader Centre collaborators. As part of the T1DCAG, I have also reviewed grant applications and had input into a number of research projects. All have been great opportunities to be involved in higher level decision making processes.
What do you hope will come from being involved?
New and advanced knowledge, therapies and technologies that are kid-sized, wanted by the community, co-created by kids and their families and makes it into the hands of young people living with T1D before they grow up.
An even bigger hope is that everyone involved with the Centre becomes role models for the next generation. For emerging clinicians, researchers and funding agencies to intrinsically embed community in their research, even if it is not a funding requirement. Most importantly, for young people living with T1D to walk tall, self-advocate and be confident that speaking up today will smooth the pathway for the next.
What do you think are the biggest challenges in caring for a child living with T1D?
The usual adjustments of a 2 year old, then a 2 and a half year old and so on are amplified when they live with T1D. Switching favourite foods is a mathematical exercise of counting carbohydrates and insulin needs. Cuddling a favourite toy when they feel low/high, then starting to put words to those feelings. First day of school, hoping the teacher has done enough training to know how to help your child but not enough that they override your plan. Starting a new sport not knowing if glucose trends or if the tech will work or fall off.
Taking on the role of T1D so the child can be a child, they need to learn how to read, do maths and create little friendships before they can navigate their own health. Setting a language standard, relationship boundaries and asking for their age-appropriate consent to set a good foundation to thrive. And keeping it real, not too dramatic and not too relaxed, keeping a great relationship with my children so they can develop a good relationship with diabetes.
Would you recommend others to join the Centre?
Absolutely! It is so important for the T1DCAG to reflect the entire T1D community. That means every voice matters and is welcomed regardless of where you live, your cultural background and age of the person or child you care for, or if you are an adult living with diabetes.
Often caring for a child living with diabetes involves a career break, and Leanne acknowledges this by also encouraging us to maintain or develop new skills.
I can’t wait to see you at the next meeting – please contact Leanne, our Community Involvement Coordinator at community@childrensdiabetesresearch.org.au to find out more.