On Tuesday 21st 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.
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:
- I am at risk of stoke because I am alive
- That risk increases with age
- My risk further increased when I got T1D
- 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.