Solutions To Fit the Needs of the Individual
Undoubtedly the biggest issue that stuck out to me from the Australasian Diabetes Congress was the difficulty of managing diabetes among teenagers and young adults.
Continuous Glucose Monitoring has been fully subsidised for people under the age of 21 in Australia since April 2017. Yet in Friday’s tech symposium, one presentation in particular highlighted high drop out rates of CGM among youth. Of the 115 or so research participants who were using CGM at the commencement of the study, only 44 were still using the technology six months later. Underlying reasons hinted at the technology being a barrier to kids fitting in with their peers, particularly in social settings such as playing sports. Many also didn’t like the attachment to ‘another’ device.
It was also pretty evident in presentation after presentation that teens and early 20s were the age brackets where diabetes was the most difficult to manage. Researchers suggested that young adulthood was associated significant life changes and challenges such as university, work and moving out of home to name a few.
To be completely honest, I don’t like hearing the (repetitive) argument that the government should subsidise technology for everyone because it will keep people out of hospitals and save lives and reduce the economic impact of diabetes on the health system. I don’t have a doubt that technology has improved the quality of my life and my ability to manage my own diabetes more effectively. However if there’s one thing that was astoundingly clear from this presentation, it’s that there are a multitude of factors in play beyond the tech alone that are contributing towards diabetes outcomes.
Models of care would be a pretty big one. I’ve heard on good authority that a lot of people slip through the cracks in the transition from paediatric to adult care. Many of us adopt approaches toward managing diabetes that might not be ‘textbook,’ but they make sense to us based on countless hours of lived experience. We need a healthcare system that supports us in those decisions, and doesn’t scare us away. The impact of the attitudes and language used by our healthcare professionals cannot be underestimated. My first endocrinologist told me that I had very poor control over my diabetes mere weeks after my diagnosis. That can be detrimental to a young person who is already feeling insecure about a new lifelong condition.
Let’s get controversial here. Nutrition. I don’t for a second believe that diet is a one-size-fits-all, but the nutrition advice we are being given is both vague and conflicting. I believe that we are all to blame for this one. Healthcare professionals, the media, d-grade celebrities and even the diabetes community. I personally wish that instead of demonising foods and food groups, we focussed on real food. Fruit, veg and plant based foods. Some protein. Learning to prepare as many of our meals at home. And not demonising those treat foods that I truly do enjoy, if I am that way inclined.
Instead of being instructed to only eat low glycemic index foods, it would have been helpful to have received some basic training around the fundamentals of insulin. It took me years to realise that insulin can take 15 minutes to start working after an injection, and that in some instances it may be helpful to give insulin prior to eating. Carbohydrate counting wasn’t a firm part of my diabetes education, nor was I told that I might need some insulin to cover a dinner of pork chops. A good basal and bolus regimen is paramount to effective diabetes management, and Gary Scheiner’s Think Like a Pancreas should be essential reading for every person with diabetes.
The consumer voice session that I was a part of earlier in the week also flagged the importance of having psycho-social support in diabetes care, whether that be through a psychologist or peer support from loved ones and fellow people with diabetes. I know for me personally, it’s that psycho-social support that has helped me to wear my diabetes on my sleeve. Its given me the confidence to be able to manage my diabetes in any kind of situation with ease.
I’d also like to wrap this up by saying that these are my humble suggestions as to what would have been helpful to me after my diagnosis at the age of 17. I don’t for a second pretend to know what it’s like to navigate diabetes as a kid, in a school setting among friends, or to be a parent navigating these situations. No judgement to anyone in these age groups. You are all amazing at what you do.
No two people with diabetes are the same. If there’s one thing that this session highlighted to me, it’s the need for solutions that fit the needs of each and every individual.
Disclosures: Diabetes Australia covered my flights, registration, three nights accommodation and some meals to attend the Australasian Diabetes Congress in Sydney. I gave up my own time to attend and am sharing my own thoughts here, as always.