Navigating Adult Diabetes Services: A Personal Journey from Burnout to Empowerment

Diabetes is tough. There’s no denying it. People with diabetes go through a lot, each and every single day. From the relentless high and low blood sugars to the endless appointments and blood tests to be done, it’s no surprise diabetes can often be put in the ‘too hard basket’ and things like diabetes burnout start to arise. I’ve lived with type 1 diabetes for the past 8 years and know all too well about the aforementioned challenges of living with the condition. Just to stay alive sometimes feels like the most insurmountable task some days.

But it’s not all doom and gloom. I feel really privileged to be in the position I’m currently in. I work here at PDC Health Hub as the Chair of our Type 1 Diabetes Collective – a diabetes peer support group for adults with T1D to connect via informal peer support, collaborate on educational events, and guide national and global advocacy projects for others with diabetes! Beyond this, I also work as a Care Coordinator. I help people navigate what often seems like a healthcare system designed to confuse and complicate the lives of people living with a chronic illness. I help simplify this process in a non-clinical way, so the time spent with your healthcare professional can be maximised on the things that matter to you. I’ve experienced the challenges of this personally with spending majority of my time during my annual diabetes appointments focusing on booking blood tests, exams, and drivers’ licence medicals, rather than actually analysing blood glucose results, and making important changes to my overall management. Thankfully, gone are the days from when I was first diagnosed of me handing over my insulin pump to the diabetes educators to upload to the clinic software, while I wait in the waiting room. However, some things in the diabetes space feel just as archaic as this, unfortunately.

A commonly discussed topic I hear in my role as Care Coordinator is the ‘transition space.’ It’s already a poorly termed concept, yet somehow the ambiguity is equally as undefined as the time period itself. I prefer the term ‘graduating’ as it feels more empowering, less likely to be confused with transgender health (a very important topic also under endocrinology’s umbrella), and also suggests there’s no defined timeframe or end to this period. Take a look at any research in the space and the overarching themes are classically related to people ‘feeling lost and unsupported’, or disappointingly more outdated research generally follows the pathway of patients being referred to as ‘non-compliant’ or ‘lost to follow up.’ Unfortunately, this language continues to perpetuate the literature and only further reinforces this narrative. Yet, these patient metrics (generally an HbA1c value at the most) paint the picture of a cohort of patients who are ‘non-compliant’ and at risk of adverse outcomes due to their diabetes. I just knew there had to be more to the story.

The bit you’ve been waiting for… here's where my story comes in! I spent the early years of my diabetes journey navigating my way through high school, an already complex enough time for adolescents, let alone when you throw diabetes in the mix. Then, add the ingredient of distance and boarding school, with my parents 300 km away and you start to see the recipe for a perfect storm. These were pre-CGM days too with our standard of care consisting of a 2 am BGL check and text message to my mum each night. Also commonly known as the recipe for an eternally tired Jake, and an eternally worried mum! I know my story is not unique and certainly not the most challenging that others I speak to have gone through. Nonetheless, it was a time I’m grateful I’m no longer enduring. This continued on for a few years with things starting to get more comforting following the introduction of CGM and the ability of my parents to see my data remotely from home. A few more restful nights, but only marginally.

It wasn’t however, until I graduated high school and started university where I really began to understand the difficulties of adulting. I’m not talking about the endless cycle of deciding what to cook for dinner or remembering the laundry that’s been on the washing line for the last week, but rather navigating the adult world of diabetes. Suddenly my 3-monthly diabetes appointments were far and few between, often clashing with my university classes. My scripts didn’t last long enough between visits which meant additional GP appointments in between for my insulin. I also became acutely aware of the ‘Diabetes Annual Cycle of Care’. I refer to it with clients in my Care Coordination role as the ‘one million things we need to do living with diabetes, on top of living with diabetes.’ It’s a well-intentioned document designed to outline all the additional tests, investigations, and appointments people with diabetes should be doing each year (or thereabouts) for the overall management of their diabetes and to keep on top of important screening. It’s exhausting just reading it, let alone actually trying to tick everything off when it’s due. Moreover, for me it wasn’t the sheer number of things to do, it was the fact that there was no one except me expected to keep on tract with all of these tests, appointments, and results. This is where I think we come a bit unstuck. I’d like to say I’m pretty organised (that’s a huge understatement for anyone who knows me). I’m diligently organised with everything and strive to master the art of organisation in all that I do! It wasn’t the number of things I had to do that caught me out. It was the fact that I’d never been exposed to this in my 4 years prior and suddenly out of the blue I had this entire collection of new things to complete, just to keep on top of my diabetes. This was before even considering my actual diabetes clinic appointments and the day-to-day management of the condition. It’s exhausting just reflecting on this now. I honestly applaud anyone who’s been able to keep up with this for so long!

Fast forward to 2023 and I had to courage to sit down with the Directors here at PDC Health Hub with a fully researched, planned and prepared program to help exactly this. I presented my program, ‘Navigating Adult Diabetes Services’ which was designed to do exactly that. I knew if I (someone highly organised and very health literate), was struggling with keeping my head above water trying to navigate this maze that there was no way I was alone in this struggle. The meeting was nothing short of awe inspiring with smiles all round! We were instantly all on the same page and ready to launch the program before we actually planned it seriously. I was ready. I knew just how important this program was for people navigating their way through paediatric and adolescent services; people who’ve been so lost in the system they don’t know where to begin; and then there’s the entire cohort who are missed altogether, such as those diagnosed with diabetes in adulthood. We released Navigating Adult Diabetes Services as a pilot program in 2023 with the aim of collecting some baseline data with educational sessions and regular Care Coordinator support to help adolescents and adults through this challenging healthcare system maze. It provided information in a simple, non-clinical and judgement-free space about all the extra stuff we have to deal with living with diabetes. It’s safe to say (unsurprisingly) the preliminary results are nothing short of incredible. It makes me excited to see how a seemingly small intervention can make such a difference to the lives of people with diabetes, all without the single mention of blood glucose values, insulin adjustments or carbohydrates!

Completing the initial pilot program at the culmination of 2023 was the cherry on top for me! Seeing how far the individuals have come on their journey, with me being one of their biggest advocates as Care Coordinator fills my cup. I feel so privileged to have been supported in this role and had the ability to take a little bit of inspiration and turn it into a reality. I can’t wait to see what 2024 brings.

Dr Jake O’Brien