Reintroduction.

I take absolutely no credit for this idea. But I have seen it going through Instagram, and I thought it might be a good time to re-introduce myself to those of you who might be new around here.

I’m Frank. I’m from Perth in Western Australia, and I’ve lived with type 1 diabetes for the past nine years. I presented to my GP with all four ‘Ts’ of type 1 diabetes – tired, toilet, thirsty and thinner – but wound up in emergency a few days later with DKA.

The hardest thing about being diagnosed at that age was trying to find a place for diabetes in my life. I lived in relative isolation for those first couple of years. I kept diabetes to myself as much as I could, and didn’t really feel motivated to learn more about it.

My turning point came in 2015 when I created a Twitter account and accidentally stumbled across the Diabetes Online Community. For the first time in my life, I saw other people candidly sharing and talking about diabetes in a normal light. I’ve also been lucky enough for the opportunity to turn many of those online friendships into in-real-life ones over the past couple of years.

Peer support is my vice. I could talk for hours and hours on end about how valuable and life changing diabetes peer support is. It definitely played a big part in better engaging myself in my diabetes management. I’m also incredibly proud to be part of a Young Adult Diabetes Committee here in Perth, because this incredibly bright group and their mission definitely fulfils what the diabetes community has done for me over the past few years.

I’m currently using a t:slim insulin pump, and it’s honestly been everything that I’ve wanted in a pump for a long time. I monitor my blood sugars with an AccuChek Guide, and intermittently use a FreeStyle Libre. I don’t really follow any particular kind of diet. I eat to meet my energy expenditure, prepare as much of my food at home and focus on ‘real’ food. I’m always on the hunt for good coffee and cakes or pastries. Especially Cannoli.

Diabetes is hard work. If there’s one thing that I could draw upon from my own experience, it would be to monitor your blood sugar as closely as possible and commit to learning about how it responds to different variables and activities. Arm yourself with as much information as you can about managing diabetes, and find what works best for you. (I personally can’t speak highly enough of Think Like a Pancreas by Gary Scheiner).

I currently work as a back of house attendant for a retail business. I honestly cannot wait for the day where I’m not on my feet all day burning energy, and I might actually feel motivated to complete some feat of physical endurance. I’m currently studying Accounting at Curtin University. I really hope that I’ll be able to use that degree to make my mark on the world somehow in the future (and earn a bit more money to pay for my health care).

I love being outdoors, and recently ticked the incredible Blue Mountains off my bucket list.

I prefer TV shows over movies. If you haven’t picked up on the references scattered throughout this blog of late, I’m absolutely hooked on Australian Survivor at the moment. Also looking forward to the Downton Abbey movie and season 3 of The Crown.

If you’re new here, or if you’ve been reading my blog for a while, I just wanted to say thank you. Whether its been through a comment, social media interaction or a real life friendship, the diabetes community continues to make the great big world around me much much smaller.

Roche Solo Tubeless Patch Pump Launches in Australia

One of the most unsurprising announcements made at the Australasian Diabetes Congress was the launch of the Roche Solo insulin pump, following its TGA approval several months ago.

The Solo is the latest tubeless patch pump to hit the market here in Australia. Hopefully with the backing of Roche, it’ll be here to stay a lot longer than the late Cellnovo. We were told that subsidised consumables are expected to be listed on the NDSS in November.

The primary reason patch pumps have been so slow to hit the market here in Australia is due to the model of funding, whereby private health insurance pays for the durable component (the pump) and the NDSS pays for the consumables. Last year, Ypsomed explained that this was the reason that they were unable to launch the Omnipod on the market here, despite it receiving TGA approval many years ago. Unlike the Omnipod, the Solo has both durable and disposable components.

The pump base is the durable component, lasting up to four months. My understanding is that consumers would apply for a 12 month supply of pump bases at a time from their health insurer, perhaps due to the perishability of batches (in similar fashion to sensors). What wasn’t made clear is whether the user would be free to switch to another insulin pump after they had used the initial 12 month supply, or whether they would need to commit to a full four years of the Solo.

Like other insulin pumps, the disposable components include a cannula and reservoir. I believe that there are only 90 degree options in cannulae, but there are options for manual insertion if desired. The reservoir can hold between 80 and 200 units, and can be used for up to four days or until the battery dies. The reservoir also contains a battery, which is apparently very environmentally friendly! I believe that the reservoir connects into the pump base as shown here.

A pump holder is a third disposable component of the Solo, allowing for the pump base to be clipped on and off from the infusion set as needed. We were told that the pump needs to be disconnected from the infusion site for water activities.

There’s a diabetes manager which allows the user to control pump settings remotely. It also has a test strip port which supports AccuChek Performa strips, if memory serves correct. There are also two buttons on the pump base, which allows the user to deliver a bolus if they don’t have their diabetes manager around.

Personally, patch pumps scare me. I have seen a lot of ‘pod failures’ from Omnipod users within the DOC. I don’t like the idea of not being able to see what’s happening underneath the pod to detect a site or insulin delivery issue. Nor the fact that the reservoir and site are in one, meaning that the whole thing needs to be discarded should the something fail before its time is up.

The Solo looked far more encouraging. I liked that the reservoir was separate from the infusion site, meaning that one could be changed without affecting the other. It also means that you can inspect your infusion sets by simply removing the pump base from the infusion site. The remote diabetes manager, which is also a feature of the AccuChek Combo pump, looks fantastic and I’d love to more interoperability on the market.

More choice is always a good thing for people with diabetes. There are heaps of people who aren’t pumping because they don’t like attachment (and equally, because they are more than happy on MDI). While I’d be inclined to say that this is an option that might have people reconsider insulin pump therapy, I’m sure that the recent exit of Cellnovo has probably lost a lot of faith in the patch pump market. Hopefully, in time, the Solo might be able to restore some of that faith in the patch pump market.

On a final note, I only spent 30 minutes with this pump while frantically Tweeting out a lot of information during a breakaway session at the ADC. I’d suggest you visit the AccuChek website or speak to someone from Roche Diabetes Care if you want to be sure of anything I’ve written here.

Disclosures: Diabetes Australia covered my travel, registration, some meals and three nights accommodation in Sydney to attend the Australasian Diabetes Congress. I gave up my own time to attend, and am sharing my own thoughts, as always. Roche also supplied morning tea during a breakaway session on the Solo at the ADC.

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.

Paranoia.

I spent a fair chunk of last night ploughing through some uni work. I finished up at around 9pm, brushed my teeth, put on my pyjamas and sat down to catch up on the last episode of Australian Survivor. My eyes kept wandering to the clock on the DVD player, which was edging closer to 9.30pm, while my brain kept reminding me of my early start in the morning and my desire to maintain this post holiday feeling of zen. At around the 10 minute mark, sleep won out over Survivor as I switched off and headed to bed.

I feel as though I’ve been chasing my tail for days when it comes to my blood sugar levels. Nothing awfully high, but still a feeling of not quite being able to curb those highs as effectively as usual. I had woken up at around 9.7 yesterday, and was unable to catch my tail for the majority of the day.

As I climbed into bed last night, I noticed that my Libre trend was slowly but surely creeping up again. Just to settle my paranoia, I pricked my finger, which registered at 10.4. I gave a 2 unit correction. Not feeling confident that this would be enough to bring me down, I also set a temporary basal rate of 120%. I so badly didn’t want a repeat of that morning.

I lay there in bed, but couldn’t will myself to go to sleep while my mind wandered indecisively over what I should do. It was in that moment, at about a quarter to ten on a Wednesday night, that I registered that my levels hadn’t been co-operating quite right since I returned home from Sydney on Friday.

It’s not the first time that I’ve thrown away travel insulin, convinced that it’s somehow spoiled in-between flights and hotel rooms and days out in the sun. But I always just thought it was pure paranoia.

I always carry my insulin with me when I fly. It normally sits in my satchel, which sits on the ground underneath the seat in front me during the five hour flight across the country. I had already replaced my cartridge a day earlier with a fresh one from my travel stash, with no noticeable difference.

So, I heaved myself out of bed, pulled a fresh cartridge of insulin out of the bar fridge, and begrudgingly replaced the cartridge on my pump, knowing that I wouldn’t be able to sleep while my mind was plagued with diabetes paranoia.

Today hasn’t been perfect, but my insulin is definitely working a lot better and those Libre lines aren’t slowly creeping upwards out of habit.

Diabetes. The sixth sense that I didn’t know I had.

The Value of Lived Experience.

It’s been a really challenging year. I still feel as though I have mountains to climb to get to where I want to be with my degree and my career. I have wondered whether diabetes would be one of the things that would have to give way this year. I’ve stared into the depths of my WordPress dashboard at many points over the course of this year, wondering if I have anything left of value to add.

Then I attend a diabetes event like Australasian Diabetes Congress, and I am reminded that my impact, as a person living with diabetes is always something that I underestimate. People like me might only have a very small presence at conferences like these, but I always underestimate our impact. I couldn’t agree more with Kim’s sentiments around advocating for the value of lived experience during Tuesday’s #OzDSMS summit.

When I first attended this conference in 2017, I expressed that it was a truly humbling experience. It was surreal to be surrounded by so many healthcare professionals (particularly diabetes educators) who knew of us from our online presences. Who had probably never heard such candid conversations from people with diabetes outside of a clinical setting, but still wanted to hear our insights and learn from us. Two years later, and those feelings haven’t changed.

It’s been interesting to watch industry and diabetes orgs habitually send people who are relatively new to their organisation along to events like these, where they can learn from people like us. I think that’s a great move, one which I do commend. It’s also been surprising to hear more than a few comments about my content being used to support internal policy work by various industry. While this is undoubtedly a public forum, there is a value on lived experience and somehow I don’t think many in the industry realise that.

When I first found the diabetes online community, watching others share their lives with diabetes so openly made living with diabetes feel normal for the first time in my life. I remember looking on in envy at some of the amazing things that were going on all over the world. In person peer support felt really far away. I felt like I would have to travel to the other side of the world to attend a diabetes meet up.

Yet here I am today, surrounded by such an amazing tribe of people with diabetes. People who are bright, people who are actively bringing about change in their own communities, and above all people who I can exchange a look at and know that they simply ‘get’ it.

At the end of Tuesday’s #OzDSMS summit, I expressed to a room filled with fellow people with diabetes what an absolute privilege it always it to sit among such a bright group of individuals and hear their perspectives.

My cup is truly full.

(I know, I talk about peer support far too much…)

Disclosures: Ascensia Diabetes Care provided hospitality during Tuesday’s #OzDSMS which included lunch, drinks and canapés. Diabetes Australia covered my flights, three nights accommodation, some meals and registration to attend the Australasian Diabetes Congress in Sydney. I gave up my own time to attend, and am sharing my own thoughts, as always.