A couple of months ago, Ascensia Diabetes Care in Australia held a Diabetes Social Media Summit the day before the Australasian Diabetes Congress kicked off (You can read The Grumpy Pumper's account of the day below). The event coincided with Ascensia launching their new CONTOUR NEXT ONE meter and integrated app into the Australian market.

When the idea for the event was pitched to me – back in June at the American Diabetes Association meeting in Orlando – I was honest: getting a group of bloggers excited about a new meter – even one with a new app – was going to be a big ask. It seems that in the world of diabetes bloggers, it takes something new and shiny to get us interested – even if most people happen to use blood glucose monitoring.

As we planned the event, we knew that there needed to be a point of differentiation that was not only going to get people into the room in the first place, but ready to share about it so that those not at the event could watch and join the conversation.

The overall theme of the day was difficult conversations in diabetes. We didn't want this to be a self-congratulatory day where all we spoke about was how well we were doing with our own diabetes management. Or a day pointing to emerging technologies that are not only years from commercial availability, but even then will be out of reach of most people.

We recognised that the vast majority of the 118,000 people in Australia with type 1 diabetes and about 300,000 insulin-using people with type 2 diabetes primarily use blood glucose meters to monitor and track their glucose levels. However, a quick scan of blogs, Facebook posts and Twitter discussions would suggest that everyone was using cutting edge, latest technology to manage their diabetes. That is simply not the truth.

We wanted to identify the privilege those of us in the room live with – extending to the technology we all had strapped to our bodies and thrown into our bags! And we wanted to look at some of the less frequently discussed topics, such as complications, (and how we can better encourage people to talk about them), why accuracy matters when it comes to diabetes care, the importance of back up plans (and why for the most part that involves going back to basics), and ask if PWDs really do have that much choice in their diabetes technology decisions.

We recognised that these are not topics frequently discussed at blogger events. Yet we felt that they should be. And also felt that this was the perfect place to do it.

Cue our keynote speaker. Chris Aldred, (best known online as The Grumpy Pumper), who has been encouraging people to talk about living with diabetes complications since he developed a foot ulcer almost twelve months ago. His ongoing treatment has provided him with a lot of material for his – and my – blog, but mostly, it has seen other people with diabetes who are living with complications feel comfortable sharing their own experiences. It has been a recurring theme in the #TalkAboutComplications movement for PWDs to say that it is the first time they have seen conversations like this, or felt comfortable sharing their own stories.

Grumps has also not been known to shy away from difficult discussions, and that made him the perfect person to lead the initial discussion about diabetes complications.

I've been working in diabetes advocacy for over 17 years now and I know we struggle to find ways to encourage people to speak about complications. Sometimes, this is interpreted as people not caring, or believing that it won't happen to them. Truthfully though, in most cases it is because people find the language around complications too confronting, threatening, judgmental and stigmatising.

Complications are, too often, spoken about as an end point. There is so much attention given to reducing the risk of complications, and not enough given to when people are diagnosed with complications. Grumps has shown that despite a foot ulcer and bone infection requiring daily IV antibiotics, he is still able to work full time as well as travel extensively while pursuing diabetes advocacy projects. His complication diagnosis was not the end of the story. In fact, in many ways, it is the beginning.

There was over 200 years of type 1 diabetes in that room. That's a lot of experience; it's also a number of years of being at risk of diabetes complications. And it provided an opportunity to talk about how living with diabetes-related complications should be as much a part of the stories we tell as the stories of people climbing mountains or running marathons.

The Aussie Ascensia Diabetes Care team need to be commended for running this event. They were comfortable to listen to suggestions about the agenda, and were prepared to focus on topics that can be divisive and difficult. They were also prepared to weather the ever-present risk of bringing together a group of vocal, outspoken and passionate diabetes advocates! That risk can be people either simply shutting down and not wanting to engage because the topics are too confronting. Or it can be people getting angry about their own experiences of having these difficult conversations.

Neither of these things happened at the #OzDSMS. Instead, conversation flowed from those in attendance, and there was significant input from people following along online who obviously felt included enough to participate by commenting and sharing their own thoughts and ideas.

Diabetes-related complications are not something of which we should be ashamed. They should not be something too difficult to discuss. We should not distil conversations into being purely about prevention. We need to end the stigma associated with developing complications and the only way – the only way – we can do that is for those living with complications to feel comfortable sharing their stories.

Let's be clear: the event was not meant to be an end point to these discussions, but it certainly was a starting point with the group we had in the room. We were very conscious that the attendees all lived with type 1 diabetes, so we were not truly representative of the wider diabetes community. But that was the right move for THIS event and the direction of these discussions. I hope we get a chance to widen these discussions in the future, so watch this space.

On Tuesday 21^st August 2018, the day before the start of the Australasian Diabetes Congress in Adelaide, Ascensia Diabetes Care held their first ever “Diabetes Social Media Summit”, to which I had been kindly invited as keynote speaker (please see disclosure).

The event was facilitated by Renza Scibilia and bloggers from Australia were in attendance, including those who had been invited to be part of Diabetes Australia's initiative called the People's Voice (look at #DAPeoplesVoice on Twitter).

I think of all of the bloggers events that I have been fortunate to be part of, this one produced the most discussion and debate. I always hope that this kind of event will not just be of value in the room, but also to the online community that may be following the hashtag (#OzDSMS) and wanting to be part of the conversation. Those of us in attendance were extremely privileged to be part of this and in my opinion, it is our duty to involve the wider community as much as possible. It’s not easy to get all of the discussions out onto all social media platforms and there is always room for improvement, but we did try.

After the introductions around the table it was time for me to talk about my favorite subject.

Me………

Specifically, my diabetes related foot issue which has been going on for almost a year now and currently sees me on daily intravenous antibiotics.

It was never my intention for this to be a talk or speech. There is no point in telling my story unless it provokes conversation both in the room and in the wider community. My story is just one person’s and whilst other may have had similar experiences, the intricacies of my story are specific to me. As is the way I deal with them and my feelings about it all. So, we ran this as a discussion workshop where questions were asked and points were made throughout. It worked well. Really well. In fact, so well that I ran way over time. However, I feel it was worth it, judging by the comments and posts from the session.

So, I started at the beginning. That my A1c was in range. That I had neuropathy from the early days when I knew less about my diabetes management and the tools I had to manage it were not as sophisticated as they are today. That I do my daily feet checks and that’s how I picked up on the first signs of an issue, went for treatment swiftly and took all the advice given. On the face of it, it was a simple ulcer (as simple as they can be…) which should have healed in 6 to 8 weeks.

The thing is, I didn’t know that an earlier trauma to the foot had caused issues that had manifested themselves later. Namely, bone infection….

You see when I did my daily foot checks I was looking for signs of infection, cuts and blisters. I knew I’d had a hard bang to the foot (I stubbed my toe on the leg of the bed) and I thought it could be broken. I also wrongly thought that there was no point in getting it looked at as there is nothing that need to be done to treat it. There was swelling, but that would go down in the end. I didn’t realise that this could lead to more serious issues. That if I’d gone for treatment on it, I could have been saved all of this.

Oh well. You live and learn. I’ve have certainly learned what to do next time!

Sharing my story prompted a great discussion with the key points being:

• When were people first told about diabetes related complications?

This varied widely, with some told at diagnosis, and others later into their diabetes journey. Online mirrored the discussion in the room and we also discussed some examples of people who were diagnosed with diabetes because of a complication.

• How was the subject raised?

Sadly, for some it was as a threat. “If you don’t look after yourself you will get complications”. For others, it was discussed that diabetes increases the risk of certain related complications and conditions. That if we are able to, on average, keep our blood glucose levels within range, that the risk can be reduced. The opinion in the room that this is the most accurate and realistic way to view and explain complications. We cannot 100% avoid them or prevent them, but we can try to reduce our risk factors.

• So. How do we understand and reduce our risk of complications?

Of course, an in range HbA1c is a great risk mitigation, but that’s not all we can do. Attending screening appointments, performing self-checks, ensuring that we take swift action if we have concerns, and knowing the route to get the care that we need are all key. Sometimes easier said than done, depending on the HCP team that you have, the area you live in, and the financial impact to you and your family – these can all factor in.

My final point for thought on this was that risk can be dynamic and we need to be aware that our risk can change. The example I gave was:

1. I am at risk of stoke because I am alive
2. That risk increases with age
3. My risk further increased when I got T1D
4. My risk further increased in February when my father had a stroke.

Not all risk factors are within my abilities to reduce, but I need to be aware of all of them.

The second session was led by myself and partner in crime for the day Renza (@RenzaS on Twitter).

The subject was Diabetes Technology Decision Making.

First question to the group.

What is diabetes technology?

I was very pleased to hear that the group were not just discussing shiny new kit. We all considered that everything that we use now and have used in the past is D Tech.

Both in Australia and globally, the use of pumps, CGMs, flash monitoring and DIY Artificial Pancreas systems are in the minority. Blood Glucose Meters and MDI therapy are used by the most PWDs, by far. We also discussed that in some countries, meters and even insulin are not readily available or indeed affordable. In Australia and other countries some cannot afford to fund enough insulin or the test trips they need to manage their diabetes in the way that they want to. And if you consider our earlier discussions of reducing the risk of diabetes related complications by having an in range A1C, these PWDs do not have the equipment that they need to help reduce these risks.

We discussed and agreed that it is our duty as advocates in a very privileged position to not only blog and post about new technologies, but also share information about the D Tech used by that majority that cannot, or do not, want to use the newest devices. In addition to this, we need to raise awareness and support the efforts of charities, such as Life for a Child, who fund and supply insulin to children in countries where it is not accessible.

Another subject of conversation was Backup Planning.

We all have a backup plan. What we would do if something in our diabetes kit failed, was lost or got broken. Comparing our plans showed the differing levels of complexity, which was often driven by the complexity of the first-choice systems that we were using.

Whatever our plans, one thing was clear. At the most basic level, there are three essential things that we need to keep ourselves safe. For me, if everything else fails, I need insulin, a syringe and a blood glucose meter (and strips of course). These things would see me though until I could get my usual kit back up and running.

The final session of the day was on accuracy.

The awesome Cheryl Steele, who is a diabetes educator and herself has Type1 diabetes, led the session.

Now. Accuracy is something that I glaze over on as soon as it is mentioned. The statistics and things like MARD just don’t turn me on. I know that BG meters are the most accurate way to check my levels and that’s what I personally stick with to make my diabetes decisions. However, Cheryl managed to do what no woman has ever done for me before……

She made accuracy interesting!

By presenting it using a real-world conversation between herself and another PWD, I finally understood the difference between blood monitoring and interstitial monitoring and why there can be a lag. I still don’t fully get excited by MARD and to be honest I hope I never will…..

But I do understand the difference between MARD and the ISO standard accuracy figures.

Whatever system we use, accuracy is important to all PWDs. It gives us the information that we use to dose our insulin. Insulin can be dangerous. So, we want the most accurate systems available. Therefore, it’s important that we all understand how accurate of all of the systems that are available to us are and that it is presented in a way that everyone understands.

I hope that there are more summits like this in the future. That a broad range of PWDs can attend and that we can work harder to ensure that the discussions and learnings are available to everyone online. The question of how we include and involve those outside of the online community did not get fully answered, but it was discussed several times throughout the day. It is important that we also work to resolve this issue.

Thanks for reading and if you are interested in seeing the full social media conversation from the summit, search for #OzDSMS.

Grumps.

Recently I was lucky enough to attend the Australasian Diabetes Congress (ADC) in Adelaide, Australia.

I have been very fortunate in that I have attended many diabetes conferences over the last few years. From my experience, they are all very similar, but different. However, this one felt differently different….

Australia is huge, right? I mean, really huge! The whole of Europe could fit into Australia. With this in mind, I was surprised to find that this conference felt very personal. Totally focussed on the needs of people living with diabetes in that country.

So, what are my main takeaways from ADC 2018?

Co-design was a topic that I had not seen at previous conferences and I think (and hope) it is going to be covered at many more. The importance of designing products along with people with diabetes is, in my opinion, essential and is the only way for companies to be successful in the future . We don’t just use these devices. We live with them every day of our lives. We even take them on holiday with us. We have a relationship with them. If we don’t love them, then at some point we will part company and our relationship will be over.

#LanguageMatters is a continuing and growing theme and is applied at the ADC better than any other conference that I have attended. The first country language position statement originated from the work that Prof Jane Speight and Renza Scibilia did a few years ago. Published by Diabetes Australia, the principles in this statement have been embraced and applied at this conference.

One subject that is increasingly important to me is the language used around diabetes related complications. As someone that has an ongoing foot issue I am fully aware of the stigma and blame that can be associated with them. In one of her sessions Jane Speight discussed this and the importance of addressing such issues. I am really pleased to see that the language being used to describe complications is starting to be looked at and people are making efforts to improve how they talk about this topic.

From a technology point of view, DIY AP (artificial pancreas) featured in a session presented by PWDs that use the technology. During this session, the Diabetes Australia position statement on DIY technologies was published. The first of its kind.

Another thing that was reassuring for me was to see the amount of interest in the launch of new blood glucose meters. Whilst they may not be as shiny and exciting as newer technologies they are used by the majority (by far) of PWDs in Australia, and indeed globally. As someone that has found himself to be considered as a Diabetes Advocate, I personally feel that it is critical that we advocate for the technology used by the vast majority of PWDs, as well as the newer technologies. If we don’t, then how will they know about the devices that are accessible to them and therefore be able to make an informed choice on which devices are best for them?

A new innovation for people with Type 2 diabetes was also launched for distribution in Australia during the conference. It was great to see a patch pump intended for people living with Type 2 who manage their condition with insulin. The small device can deliver a 2-unit insulin dose at the press of a button, with ease and discretion. It was so reassuring to see investment in technology development and research for people living with T2D for a change.

The subjects of complications and diabetes technology decision making were covered in the Diabetes Social Media Summit hosted by Ascensia Diabetes Care the day before the conference started. This will be the subject of my next post.

Thanks for reading.

Grumps.