Catching Up to The Real World.

This week, my diabetes social media feeds have been flooded with posts on one of my favourite topics.

Amputations.

It’s not something I like to think about. One minute I am flooded with guilt, wondering if I am doing enough to manage my blood sugar levels. The next minute, I try to put those scary thoughts into a box at the back of my mind and tell myself they’ll never come to fruition.

I still don’t believe that fear is a motivator for health. Nor did I feel that amputations were a suitable theme for 2016 National Diabetes Week. However, I really am trying to evolve and think about the underlying message rather than to simply react.

I watched some of the news coverage that arose from the campaign, highlighting the 4,400 diabetes related amputations that occur each year. Encouragingly, the campaign has been framed to highlight the 85% of these that are preventable with earlier detection and treatment. I was presented with case studies of individuals who had brighter futures thanks to limbs that had been saved. I was also encouraged to check my feet. (Sidenote: I probably am overdue for my annual checkup this year).

Yet watching these videos, there was still one question on the back of my mind that hadn’t been answered.

What should I be doing today to prevent these complications from ever happening? 

Going by some of the comments to these social media posts, it seems that I am not alone.

It would be naive to think that my diabetes management would be where it is today if I were solely following the advice of my doctor. If I were listening solely to the advice of my diabetes healthcare professionals, a great deal of my reality today would not exist.

I would not be on an insulin pump, because my endo deemed a hba1c around the 7% mark satisfactory. I would not be supported by a diabetes educator, because I was deemed competent enough to self manage on my own five or so years ago. I would not be pre bolusing insulin prior to eating, because I was told that insulin could be taken at mealtimes. I would only be checking my blood sugar level five times a day, because that diabetes educator once remarked that you test your blood sugar a lot! And because I was once made to feel guilty at the Pharmacy for wanting to purchase more. 

I probably wouldn’t be writing this blog or connecting with other peers online, because my endo once gave me a look and remarked I can only imagine [what you’re doing on the internet]. There’s a good chance that I wouldn’t have any peer support in person either, which has contributed greatly to my physical and mental wellbeing. I wouldn’t have any of the knowledge that I have today, and I would be left feeling hopeless each time my GP comments on my increased hba1c and the fact that you need to get your sugar diabetes down. Sugar diabetes, I kid you not.

Look, I am definitely not going to suggest that anyone reading this abandon their healthcare professional. Nor that Diabetes Australia (or anybody else) should start preaching to people on how to manage their diabetes.

However, I do feel that some of the guidelines we are given are both vague and outdated. We could be doing a far better job of embracing the many different options and choices we have in management strategies. We could be doing a far better job of pointing people in the right direction, and encouraging people to find management strategies that best suit them.

If diabetes organisations and healthcare professionals don’t wish to catch up to what people with diabetes are doing in the real world, then they put themselves at risk of being left behind.

Here is one of the campaign materials, and you can check out more on Diabetes Australia’s Facebook page here.

En Route to RED and ADS-ADEA 2017

It’s a busy week in diabetes.

Today I’m at the Roche Educator’s Day (RED) in Perth, which is a day specifically for Diabetes Educators held annually on the day prior to the ADS-ADEA Annual Scientific Meeting.


The reason I’m here? I’ll be speaking in the final session of the day, which is the People With Diabetes Panel Discussion, kicking off at 4pm WST. I am told that this is the first year that there will be a session driven by consumers, as a result of feedback from attendees at previous events. What better way for Diabetes Educators to learn than gaining insights from actual people who have diabetes?

I’m live tweeting using #RED2017 on Twitter, so be sure to follow along for live updates from myself and other attendees.

Then from tomorrow through until Friday, the Australian Diabetes Society (ADS) and the Australian Diabetes Educator’s Association (ADEA) are holding their joint annual scientific meeting right here in Perth. The conference brings together diabetes healthcare professionals, researchers and people working in the diabetes industry.

This is the part where I give everyone gaping looks and say “you travelled all the way from Melbourne?!”

Obviously I had been eyeing the ADS-ADEA event this year, given that it was being hosted right here in my hometown of Perth. However given the cost of registration, there was no way that I could justify going.

So I was absolutely honoured when Diabetes Australia asked if I would be interested in being part of their media team at this year’s event, alongside these three amazing diabetes advocates:

Melinda of Twice Diabetes / @MelindaSeedT1D

Ashley of Bittersweet Diagnosis / @Health4Diabetes

Renza of Diabetogenic / @RenzaS

The idea is that we will be providing a voice from the community, for the community, and hopefully lead the push for greater consumer involvement at future diabetes conferences. 

We will be live tweeting out of the sessions using the hashtags #DAPeoplesVoice and #ADSADEA2017 on Twitter, and packaging updates for Diabetes Australia’s Facebook page. Of course, in the weeks to come, there’s a good chance we’ll have lots to say through our blogs as well…

I really do thank Diabetes Australia for making this initiative happen, and hopefully this is only a bridge towards larger consumer involvement at future diabetes events.

Disclosures: Roche Diabetes Care Australia have covered my registration and travel costs to attend Roche Educator’s Day. I am also being paid an Honoraria for my giving up my time to speak in the People With Diabetes panel discussion. There is no expectation that my participation will bind me to a particular view of Roche, nor is there any expectation that I will blog or Tweet about the event.

Diabetes Australia have provided me with a media pass to attend the ADS-ADEA conference from Wednesday through until Friday, with the view that I am interested in attending and delivering my own honest insights to the wider diabetes community. Indeed I am!