Diabetes Advocacy

A Humbling Experience

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On Tuesday, I attended the Roche day for Diabetes Educators as an invited speaker. For the remainder of the week, I am at the ADS-ADEA conference as a consumer reporter for Diabetes Australia. All disclosures are here.

My time at the Perth Convention and Exhibition Centre has been an extremely humbling experience, and unlike any of the consumer driven events that I’ve ever been to.

I really have been blown away by the many incredible diabetes educators who came and introduced themselves to me at the conclusion of the Roche Educators Day on Tuesday. It was so humbling to hear them praise the lived experience that was presented during a consumer driven panel discussion. They had travelled from all over the country to be here, and their passion to learn and to self improve really shone through.

This was indeed, a very different crowd to the consumer events that I’m used to. For me, the highlight was putting faces to some of the diabetes educators and healthcare professionals that I’ve previously only known online. Including getting a big pinch from South Australian based diabetes educator Jayne Lehman, and being asked if I was real. It was also great to reconnect with the team from Abbott a few short weeks after our convention at DX2Melbourne, as well as meeting the team from the Australian Behavioural Centre for Research in Diabetes (ACBRD).

The real highlight was being able share this experience with Renza, Ashley and Melinda. Each of us have very different opinions on diabetes. Each of us come from different walks of life. Yet I love that we are able to come together, support each other, respect each other, and hopefully enjoy each other’s company at events like these.


I feel like I’ve been a broken record in my conversations, repeatedly saying to people I meet that I do not represent all people with diabetes. I am among the more privileged, more well educated individuals. Sadly this is not the reality for all people with diabetes. I was one of those people a short three years ago. It really is my wish not only to see consumers more empowered in their diabetes management, but also to see healthcare professionals and diabetes organisations better supporting their patients to be more confident in self management.

In response to a statement from diabetes educators about some consumers not taking responsibility for their actions, Melinda at Twice Diabetes put it really bluntly in one of our sessions yesterday afternoon. Consumers really have no choice but to start taking responsibility for their diabetes decision making.

Diabetes is a live or die situation.

You can continue to follow our live updates from the ADS-ADEA conference in Perth today by following #ADSADEA2017 and #DAPeoplesVoice on Twitter.

En Route to RED and ADS-ADEA 2017

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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!

Diabetes Advocacy at #DX2Melbourne

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One of the speakers I was most looking forward to hearing from at DX2Melbourne last week was Greg Johnson, CEO of Diabetes Australia. Professor Johnson was leading a session on diabetes advocacy, and I was thrilled that he would be engaging with a room full of consumer advocates.

Professor Johnson talked about the history of diabetes organisations in Australia (with a book of the exact title in tow!), with a movement by people with diabetes, for people with diabetes. Many of the original goals around patient centred care remain the same today, suggesting that we may have to reinvent our approach towards them.

At the time there wasn’t much of an understanding of the psychological aspects of diabetes. Establishing the Australian Centre for Behavioural Research in Diabetes (ACBRD) in 2010 was a big step towards helping better understand those elements and improve the quality of life for people with diabetes.

He highlighted the importance of the National Diabetes Services Scheme (NDSS), which is responsible for the delivery of subsidised diabetes consumables here in Australia. There were 106,000 newly diagnosed people with diabetes registered on the NDSS in the past 12 months. 9,000 people didn’t fit within type 1 or type 2 diabetes, while a further 37,000 were diagnosed with gestational diabetes.

He talked about advocacy, most notably the win on securing funding for Continuous Glucose Monitoring from the federal government in under 21s. This election promise was finally delivered when new Federal Health Minister Greg Hunt took over the role earlier this year. Many consumers didn’t realise the years of groundwork that went into achieving the outcome we have today.

How do we, as advocates, get out out there and create change?

How do we empower the consumer voice, and lived experience?

There’s a real need for us to come together, listen to many different stakeholders and advocate for ALL.

There’s a lot of frustration from people with diabetes who are still seeing shaming messages from diabetes organisations.

People don’t feel empowered to raise awareness and seek out communities.

These were just some of the questions and comments raised by the attendees in the room. Despite some robust discussion among the advocates, I didn’t feel that I got many answers to those questions during that session.

Sitting amongst some of the most influential diabetes advocates in the country, I was itching to know what I could do to help bring about change. I wanted to know where consumers sit in the scope of what Diabetes Australia is trying to achieve.

To be honest, I often feel frustrated by communications from diabetes organisations. When I think about what people with diabetes are doing in the real world – chatting in closed Facebook groups, writing powerful blog posts, reading the scoop on the latest tech, sharing opinions and organising amazing events and meetups – these things often feel ignored, rather than supported.

Professor Johnson rounded out his talk by saying that advocacy doesn’t end once a decision is made, and that we have to keep working with people to create change.

I feel that revisiting the level of engagement with consumers would be a powerful way for diabetes organisations to bring about further change.

Disclosures: Abbott Diabetes Care covered my travel expenses from Perth to attend this event. Further disclosures can be found at the bottom of this post.

Diabetes and Mental Health at #DX2Melbourne

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On Monday evening, the attendees at #DX2Melbourne took part in a live webcast discussing the emotional, psychological and mental elements of living with diabetes. The panel was joined by psychologist Lisa Robins, who has experience in diabetes clinical psychology. I was actually thrilled for the opportunity to address this topic at an event of this scale.

Again, I am only relaying what I heard and talked about as honestly as I can recall…

It was quite interesting to hear one member of the panel comment that during earlier times he thought he was doing okay, but looking back on his journey today he has second thoughts. I actually feel the same way. I never thought that it was okay not to be okay, or to consider the impact that type 1 diabetes can have on my mental and emotional wellbeing. Today, I have no hesitation in saying that I felt isolated, emotional, not very well supported and in hiding from my condition.

Who was offered psychological support when they were diagnosed? A quick show of hands from the panel indicated two or three out of eleven. I shared with the panel that I was visited by a social worker in hospital. At the time, I felt relieved to feel normal and energetic once again. I felt that she was pressing for something that wasn’t there. However, how great would it have been if she had:

  1. Taken my word that I was fine.
  2. Highlighted some of the symptoms that I might expect further down the road.
  3. Pointed me to what other people with diabetes are doing to feel well with diabetes – weekly OzDOC chats, Twitter accounts, closed Facebook groups, forums, in person meet ups and peer support.
  4. Left me her card if I did feel that I needed that professional support.

17 year old me would likely have still ignored it, but I digress…

How do we best approach the issue of mental health? It’s something many of us prefer to stay silent about, and treated like its something to be ashamed of. A lot of us like to prove that we are stronger than diabetes, and in doing so we might ignore our vulnerabilities.

The consensus from the panel was that our healthcare professionals don’t take the time to simply ask “how are you going?” in reference to emotional health. The panel suggested that we need to normalise psychological support within diabetes, building it into our annual checklist with our eyes and bloodwork and feet. I’d also add changing the word ‘health’ in mental health to ‘wellbeing’ or ‘wellness.’

I was also thrilled to hear other panel members praising informal peer support. One panel member shared that in the absence of psychological support, it was peer support that had aided her mental wellbeing for so long.

Personally, online communities were the first form of connection I had to anyone else with diabetes. There is so much knowledge out there that helped me to become better engaged in my diabetes management. Those communities were my bridge to finding in person peer support, both of which help me to maintain relatively good emotional wellbeing today.

Touching on the stigma from healthcare professionals associated with online communities, panel members commented that it was more accessible, and no different from going to a coffee shop. One gem was that online communities complement, rather than replace psychological support.

Diabetes burnout was the next topic, and the panel pondered ways of how we identify those triggers that might suggest we need to take a step further.

I did ask Lisa how well she thought our healthcare professionals would be able to pick up those triggers and refer to adequate support. She was very confident, especially in reference to a GP. My personal view is that the right healthcare professional would be able to identify those triggers, so it’s definitely important to shop around and have healthcare professionals on your team that are meeting your needs.

Instead of trying to fix everything, one gem from a panel member was to instead focus on one element that you can fix. When I’m feeling burned out I might turn off my phone for 12 hours, go outside to ease my mind or go to bed early so that I feel more rested. Take small steps.

Another panel member talked about diabetes as extra years thanks to modern medicine, and all of the wonderful things she’s been around to experience.

Without a doubt, this was the highlight of my time at DX2Melbourne, and a topic that really did need to be discussed. The live webcast will be available on demand in a couple of days, once the camera crew (yes, there was a crew filming us) processes it all together. I will keep you posted.

If you’re in Perth and would like to connect with other type 1s and learn more about mental health in a supportive environment, then I highly recommend that you come along to this event on Thursday, August 24.

Disclosures: Abbott covered my travel expenses from Perth to attend #DX2Melbourne. I was put up at The Blackman Hotel on Monday evening, and was fed and watered across the duration of the event. There was a lovely goodie bag with a FreeStyle Libre reader, two sensors and some branded stationery. There was no expectation that I would participate in this webcast if I did not wish to, nor was there any expectation that I would blog about the event at all!

FreeStyle Libre: Questions and Answers from #DX2Melbourne

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I’m back home today after a whirlwind two days spent at Abbott’s Diabetes Exchange event in Melbourne. The event was filled with such insightful and stimulating conversation, that my mind was still buzzing at 11.20pm last night when I finally crawled into bed at home.

Abbott covered my travel expenses from Perth to be there, but they did not pay for my opinions here or anywhere else. I am really grateful that Abbott are continuing these consumer conversations after last year’s DX2Sydney event, when they clearly didn’t need to. Perhaps my views are biased because I was a part of these conversations, but I am really enthusiastic about the FreeStyle Libre. My experience with it has been largely positive, and it continues to be a part time member of my diabetes toolbox.

It was fantastic to hear the Abbott team acknowledge and even encourage those little tips and tricks that people out there are already doing, even if they couldn’t technically endorse them. Like letting the sensor sit for a day after application before starting it up. Or the Rockadex patches and other adhesives that people are buying from small businesses online. I loved that they were somewhat aware of what people are doing out there in the real world.

Through my blog, through e-mails and through my circles here in Perth, I have received a great deal of feedback on the FreeStyle Libre. People either love it or hate it. Today, I thought i’d start by sharing some of the feedback I received from Abbott over the past two days. While I’m doing my best to relay what I heard and talked about, I can’t guarantee that these words are 100% accurate.

External adhesives.

Hands up if you’ve had a sensor fall off? During the days of warm weather, t-shirts and outdoor activities, that sensor is simply not sticky enough for me. Jessica Shi, Abbott’s QA and RA Manager, tells me that any external adhesive needs to be of medical grade in order for it to be officially endorsed.

Inaccuracy of the sensor when levels are high.

Ever had the Libre tell you that your blood sugar was 18mmol, while a fingerstick gave you a reading of 13mmol? There was definitely a conscensus among the room that some of us had difficulty trusting the sensor at times.

Bruce Passingham, Abbott’s Scientific Affairs Manager, told us he’s interested in hearing about each individual’s circumstances. There might be other conditions or medications that could be affecting results. He also touched on hydration as well, which is a no brainer for me when my levels are a little stubborn.

The biggest takeaway here is to make sure you call customer service. I am so surprised at the number of people who tell me that they haven’t bothered to. All of my issues have been resolved through customer service, and a few bloggers in the room praised the express shipping of replacement sensors.

When will we see the Libre funded by the Australian government?

Earlier this year, the Department of Health was seeking submissions from consumers to potentially get the FreeStyle Libre funded through the National Diabetes Services Scheme. It’s currently a bit of a watch this space…

Are there any plans to add alarms to alert users of dropping blood glucose levels?

In reference to the likes of Dexcom and Medtronic, Abbott have reminded us that their product is not a Continuous Glucose Monitor. It is a replacement for finger sticks.

How many people will an automated insulin delivery system actually reach?

Recent headlines out of the US have surrounded the partnership between Abbott and Bigfoot Biomedical, makers of an automated insulin delivery system. “Next generation” FreeStyle Libre sensors will supply glucose data, which Bigfoot’s system will use to automatically deliver insulin and regulate glucose levels.

My question to the team was around how many people the end product will actually reach. I was told that this next-gen Libre sensor can also be paired with a Bluetooth enabled insulin pen, which will provide smart dosing advice for those on Multiple Daily Injections. Abbott expect that their product will reach a greater number of people through the options for people with type 1 on Multiple Daily Injections, and those with type 2 diabetes.

Obviously, don’t expect to see anything like this to hit Australian shores for a long, long time…

This doesn’t even begin to scratch the surface of a very stimulating two days of diabetes conversation, and I’ll have more to follow in the coming days. You can also keep an eye on these bloggers who were in attendance, for their perspectives on the event.

Further disclosures: Abbott supplied me with a new FreeStyle Libre reader, two sensors, and a lovely goodie bag with some pens, paper and a few other bits of branded stationery. I was put up in a room at the Blackman Hotel in Melbourne for one night. I was also fed and watered across the duration of the event.