A place on the panel

The other night, I drove through the pouring rain to Geelong to speak at an information session for healthcare professionals about CGM technology. The event was run by AMSL, the distributors of Dexcom here in Australia (the disclosure song and dance can be found at the end of this post).

I sat on the panel with Dr Natalie Harrison, a terrific local endocrinologist (oh – how’s THIS for a bit of disclosure – we went to kindergarten together!!) and paediatrician and diabetes technology champion, Dr Peter Goss. I was there to bring the overall IQ of the panel down, share the ‘living with CGM’ story and be the point of difference between the glossy information presented by the CGM company.

On the left – the numbers of all readings in the glossy propaganda (it’s about 6.2 in our language). On the right – real life.

Both presentations by the doctors on the panel were enlightening. They clearly showed how CGM could be used in a number of different scenarios. The thing I particularly enjoyed was how both speakers are using this tech as tools of empowerment for the adult or child with diabetes – not for any other reason. Both repeatedly said that although in most of the cases they presented, there was a reduction in HbA1c, the biggest benefits to the PWD was improved quality of life. (I may have done a little fist pump each time they mentioned that!)

Examples included shift workers, tradies working on construction sights, exercise nuts, kids, adults, teens – demonstrating a terrific cross section of the diabetes community who may – and indeed have – benefitted from the technology. There was also a discussion about how CGM is useful in specific target groups and situations, with a considerable time of the discussion being about low carb diets and CGM. (And can I say just how refreshing it was to have this discussed with little judgement from the speakers. Too often LCHF or just LC is dismissed by healthcare professionals without any willingness to accept that there are many people who are using this as part of their diabetes management and achieving excellent results.)

Dr Goss also mentioned how useful CGM tech can be for families where ‘dead in bed’ is a real concern because it can show families just how stable glucose levels usually are overnight, and therefore may help reduce a lot of the anxiety parents feel. (There was also a discussion about the significant emotion around DIB and how it is frequently overplayed. This is really important because while one person dying from DIB is one person too many, it is thankfully a very, very rare occurrence (as shown in all local and international literature). The fear and the risks need to be in perspective and unfortunately, that is not the case at all times, and the anxiety it is causing is unnecessary.)

After the official, smart speakers finished, I stood up. At this stage, the AV equipment had called it a night, so I put aside the few slides I had developed, and shared a few things.

I spoke about why I love this technology and why I choose to use it pretty much all the time. But I also spoke about its limitations – specifically the emotional and psychological barriers that are of concern. I raised the point that reluctance to use CGM by PWD could be for myriad reasons and to never assume what that reason is (this was in direct response to the suggestion from one of the speakers that often PWD refusing to wear CGM have something to hide). I suggested that for some, it is a huge step to agree to wear something attached to one’s body all the time – something that provides a lot of confronting information, beeps, alarms and can be downright annoying. This is not a small consideration – it is big!

I also spoke about the necessity to customise just how PWD use the technology. I explained how I turn alerts on and off, depending on how engaged I am with my care. I could see that didn’t sit well with everyone so I tried to explain that being able to deal with – and respond to – a couple of alerts, is better than having the all on and doing nothing because it is too overwhelming. Or simply not wearing the technology at all.

And I also spoke about how what I do to make CGM work for me, even if it is against the direct advice of the company – and HCPs. Case in point, my sensor and transmitter are on my arm at the moment. I have found that recently, I get better readings and the sensors last longer if that’s where I site them. I also leave the sensors in for a lot longer than the suggested 7 days. (Peter Goss concurred with both those statements saying that most of the children and adolescents he sees prefer to wear sensors on the upper arm. And there was a bit of a ‘who leaves their sensor in the longest’ discussion, with Dr Goss sharing that the record in his clinic is 26 days. I did disclose that while I have a mental block about going beyond 21 days, I know people who have doubled that!)

This is why it is important to hear directly from people who use the technology. While both doctors shared case studies, the focus was really on how CGM helped smooth out glucose lines. And of course that’s important. But equally important is the way we manage the technology in our life, because if we can’t find a way to get it to work for us, we won’t wear it. After the presentations, a couple of HCPs thanked me for being there and said that I had raised a number of things that they just had not considered before – all things that are usually missed when a PWD is not part of the discussion.

And it served as a reminder again that even though it is terrific to have people with diabetes represented in some ways in presentations at these sorts of events (or conferences, meetings etc.), the only way to hear the real story is to hear it from someone living it.

Thanks to AMSL for inviting me to speak, but more so, for putting a person with diabetes up there on the panel. We belong there.

Disclosure

I was invited to speak at this event by AMSL Diabetes, Australian importers and distributors of Animas and Dexcom. I was provided with product to speak at this event…. The team from AMSL did not hear or see my presetantio prior to the evening and the only direction I was given was to share my experience of using Dexcom. Which I did – the good, the bad and the ugly.

(For the record, although not really relevant, but I’m disclosing the crap out of everything here, I also use an Animas pump. That was wholly paid for by my private insurance company whose premiums I pay each fortnight through clenched fists of frustration as their premiums continue to rise. I also pay for the ongoing consumables needed to drive said pump.)