Our Consumer Representatives are an important part of our Centre, ensuring the real-life experiences of those living with T1D is considered in our work, including those that care for them.
In this edition we find out why Sharon, a mum caring for her daughter in Victoria, came to be involved in our research and what she finds challenging the most that research will hopefully change.
What led you to become a Consumer Representative and why?
I enjoyed being around other families who understood what I was going through. I am a big believer in the benefits of supporting one another. I think my mum saw an advertisement in a diabetes magazine and suggested that I should apply, which I did. I have been involved as a Consumer Representative since 2022-2023.
What have you been involved in so far?
I am a current member of the Type 1 Diabetes Community Advisory Group which as members from across Australia. I have also been involved in the Health Economics Working Group. This group is focused on looking at the economic burdens involved in living with Type 1 diabetes or being a carer of a child that lives with Type 1. I was also involved in the Rio Tinto Children’s Diabetes Centre; a Breakthrough T1D Centre Of Excellence Symposium in July 2023.
What do you hope will come from being involved?
I hope that being involved in our research is going to lead to better treatments for people living with Type 1 diabetes and fairer and more equitable access to quality healthcare. I also hope that it will result in greater understanding in the community of Type 1 diabetes and its impact.
What do you think are the biggest challenges in caring for a child living with T1D?
I think the biggest challenges of caring for a child living with Type 1 diabetes are the physical, financial and psychological ones. It's things like having to get up in the middle of the night when your child has a low, having to take time off work to attend appointments and school excursions/sports days or camps, not being able to get a disability support pension due to my child not being considered disabled enough. It's seeing your child upset because they feel different from other children and don't like having to do finger pricks etc all the time. It's the mental load of having to make so many decisions every day such as carb counting.