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A couple of days ago, I woke up at 5am low and stayed that way until about 12pm when I decided to have a sushi roll for lunch. My thinking was that if white rice didn’t solve this low, nothing would! I’d already thrown a lot at it – juice, black tea with sugar, jelly beans – sitting there watching my CGM trace stay in the red area apart from very occasional and very small rises before dropping back below that comfort line.

The rice did the trick. And then some. I watched the spike as the evil rice did its thing and sent me into the mid-teens. Thanks rice; thanks you very much. (I know, I know…we’re not supposed to think of food as good and bad, but rice is the freaking devil.)

I then watched the spike change direction and start to plummet. I’d done everything ‘right’… dosed at the right time, calculated the carbs, delivered the correct amount of insulin… Rice is my food nemesis. I’ve tried everything and just can’t get it to work which is why I rarely, if ever, eat it. But I was getting nervous at the non-budging CGM lows and knew that rice was a sure-fire way of getting me out of low-zone.

Rice: evil little grains of misery.


Everything fell back into place by the afternoon and then that night, dinner consisted of a low carb meal. The roasted cauliflower, warm salad of broccoli and green beans, avocado and cucumber salad with pepitas, and roast beef barely caused a blip on my CGM graph for the rest of the evening. The tiny bolus that accompanied the meal did its trick and the line stayed in-range and mostly flat. The dark chocolate and cup of tea I had before bed had no effect either.

Before I started using CGM, I had no idea just how different foods truly impacted my glucose levels. Carb counting can be pretty hit-and-miss, but I wasn’t too horrid at it – at least for most of the time.

Doing the recommended four or five checks a day hid most of the truth about what was going on for most of the time. Sure, my glucose levels may have been not too horrid when I checked before meals or before bed, but in between those random checks, there was A LOT happening to which I was completely oblivious.

CGM doesn’t necessarily need to translate to being more limited (or more boring) about food choices. But it does arm us with a lot of information about how our glucose levels react to certain things, which means that we can make more-informed choices about what we eat, and how we eat it.

Using CGM means that I can be much smarter about timings of boluses (and the types of bolus), and even the times I choose to eat different things. I know I am more insulin resistant in the mornings, so it’s a lot more difficult to manage with high carb foods at that time of day. I learnt that delaying my morning milky-sugar-added coffee by just half an hour results in less of a spike.

Of course, we need to remember that food is not the only factor that impacts our glucose levels. CGM has offered great insight into hormonal changes, effects of stress and different meds and eating a certain way cannot guarantee a flat CGM trace.

For the record, THIS is one of the main reasons I use CGM. I get a little tired of the constant focus there is on the technology ‘saving lives’. Do I honestly believe that my CGM has saved my life? Sure, it makes me feel safer – especially when travelling on my own – but for me, the real reason I use it, and its real benefit, is to be armed with information about how to best deal with diabetes.

DISCLOSURE

I probably just should mention that I generally self-fund all my own CGM costs. This includes the $540 I just spent on a new transmitter! When I’ve been given product while participating in trials, or in exchange for speaking gigs, I’ve always disclosed on this blog.  

I also have some very generous friends in the US who have most kindly given me sensors when they’ve had spares. They are wonderful, wonderful people and I am so grateful for their generosity!

On Saturday, Medtronic Australia hosted their first Diabetes Advocates Day. Ten or so advocates from across Australia came together to hear about new technologies and talk about real-life application of technology in our diabetes lives.

There were some familiar faces and some newbies too which is always great to see. I, most opportunistically, used my role as facilitator for the day to get book recommendations from as part of the ice–breaker session. (Truthfully, this is always one of my favourite parts of these events, but it can also be a challenge when the people in the room are all over-sharing bloggers!)

There were a couple of standout moments throughout the day worth sharing.

Melbourne endocrinologist, Professor David O’Neal, gave a great talk on the future of diabetes technology.

David is one of those endos who after you meet and hear speak, you want to make him your endo for life. He is ridiculously tech savvy and his knowledge of diabetes technology is hard to beat. If you Google him, you’ll see that he is a regular contributor to diabetes journals and is involved in a lot of diabetes tech research.

Which is all good and well, but the real reason David is so wonderful is because he completely ‘gets’ diabetes and what technology can actually offer us. As a tech geek, it’s easy to be completely and utterly captivated by the technology, but David readily admits it has limitations.

This is really important to remember. Too often we forget that the tools we have today are not perfect, and cannot seamlessly mimic a fully functioning pancreas. Most importantly, this is not the fault of the person using the tech. David acknowledged both of these points in the opening to his talk.


I really love that David mentioned this because so often when technology doesn’t work the way it is meant to, there is an assumption that it is the fault of the user. We mustn’t have pressed the right button, at the right time, in the right order, with the right calculation.

But actually, the tools are just not smart enough to account for the daily changes and variabilities and inconsistencies that play a pivotal role in life and impact our diabetes. As David said, insulin requirements overnight can fluctuate by up to 200%. There is nothing available at the moment that is equipped to deal with that sort of variation.

Add to that, the effect of exercise, food, stress, hormones, illness or pretty much anything else, and there is no way the tech can keep up – or those of us using it can work out how to factor it all in.

This constant need to makes changes is what sets diabetes technology apart from other medical technologies which are often ‘set and forget’ for the wearer. With diabetes devices, there is no such luxury, which is why we need to remember that often, technology actually adds work to our already significant list of diabetes tasks.

Another absolute gem from the day came from blogger and advocate Melinda Seed. During a discussion about HCPs reticence to deal with PWD’s research online, was her comment (as tweeted by Georgie Peters):

This really is turning the whole ‘Dr Google’ thing on its head. Instead of fearing the internet – and PWD who use it to research and better understand our health condition, surely HCPs could engage to discuss safe ways to do that research. Being part of the solution rather than just fearing it makes a lot of sense.

And perhaps, look at it the way David O’Neal chooses to:

In a roomful of tech-heads, there was also a moment where we considered those who have no interest in using any sort of newer tech available. With the dawn of new hybrid closed-loop systems that take even more control away from the user, how do we make that leap to completely trusting the device? And is this particularly difficult for those of us who identify as control freaks when it comes to our diabetes management?

Affordability and access also came up, reminding me – and hopefully those from the company producing the devices – that this needs to be a consideration at all steps of the conversation. There is no point in developing and releasing onto market whiz-bang tech if people can’t afford to use it. (And we also must remember that as every new piece of tech is released, the divide between the haves and have-nots becomes more and more cavernous – especially when you remember ‘have-nots’ refers to not only the unaffordable tech, but also to basic needs such as insulin…)

DISCLOSURE

The Diabetes Advocates Day event was hosted by Medtronic Australia and was supported by Diabetes Australia. I am employed by Diabetes Australia as Manager of Type 1 Diabetes and Consumer Voice, and attending and facilitating the event was part of this role.

There was no expectation by Diabetes Australia or Medtronic Australia that I would write about the event, and my words here and in other online spaces are mine and mine alone. For more, check out the #DAdvocatesAU hashtag on Twitter and keep an eye out for blogs by other attendees.

The ATTD conference is, by its nature, very technology-centric. This is absolutely not a negative; in fact, it was one of the reasons that I had always wanted to attend because I am such a DTech junkie.

However, as it turns out, it wasn’t the promise of hearing about, or seeing, the latest devices that had me most excited as I perused the program, setting out my schedule for my busy days in Paris.

No, it was this session on the afternoon of the Thursday that really piqued my interest:


I knew we were off to a good start when session co-chair and first speaker, Dr Lori Laffel, flashed this slide up, announcing ‘Diabetes is Stressful’.


Sometimes, there is an assumption that diabetes technology automatically reduces stress. To a degree – and for some – that may be true. For me, the thought of wearing CGM all the time reduces the stress of not being aware of hypos. But it also adds stress with the never-ending, pervasive data data-feed.

There was also this dichotomy that so many of us face:

 

Acknowledgement of the terminology we use was a welcome addition to this talk. I think that at times our expectations are not being particularly well managed with the way technology is named.

Expectations were covered again when Dr Kath Barnard took the stage.


I love that Kath discussed the responsibilities of health psychology researchers when it comes to improving the outcomes of tech. She mentioned the importance of developing and using device-specific measures to assess psychosocial impacts on both people with diabetes as well as their carers. Most important was the point of ensuring robust and consistent psychological assessments in clinical trials to better understand participant experiences. This often seems to be a missing component when it comes to researching technology.

This is a recurring theme from Kath: that the juggernaut of diabetes technology advances needs to stop being only about button pushing and changes to clinical outcomes if their full potential is to be realised.

It’s important to note Kath is not anti-tech – in fact she frequently acknowledged the ground-breaking nature and significant potential of diabetes technologies. But her dedication to individualising technology use for each person with diabetes is her over-riding message.

Overall, the take-home from this whole session was this comment from Kath, which became a mantra for me for the remainder of the meeting: kathbarnard

Next up, Dr Andrea Scraramuzza from Italy explored the human factor in technology in paediatric diabetes, however his talk was relevant to adults too. Human Factor brings together information from psychology, education, engineering and design to focus on the individual and their interaction with products, technology and their environments with the aim of better understanding the connection between human and technology.

I really loved this presentation because it brought home the idea that it doesn’t matter how whiz-bang the tech is, if the education is not right, if human limitations are not considered and if people with diabetes are not willing to learn – or clinicians are not willing to teach – the potential of that tech will never be reached.

The session closed with the always brilliant Professor Stephanie Amiel who spoke about hypoglycaemia – specifically, where to go when the technology hasn’t worked. I thought this was a really sensible way to round out the session because it reminded us all that technology is never a silver bullet that will fix all situations. Sometimes, we need to revert to other ideas (possibly alongside the technology) to search for solutions.

I was really grateful for this session at the conference. All too often psychology is ignored when we talk and think tech. The focus is on advances – and the speed of these advances – all of which are, of course, super important.

But it is undeniable that alongside currently available and still-in-development technology is the fact that there is a very personal aspect to it all. Whether it be considerations of actually attaching the tech to our bodies (unfortunately this wasn’t really discussed) or tech fatigue and burnout, or simply not wanting to use the tech, this is the side of diabetes and technology that needs to be researched and understood because how we feel about using the tech absolutely impacts on the results we get from it.

Well done to Professor Tadej Battelino and the ATTD organising committee for including this session in the ATTD program. It really was most useful and hopefully the HCPs and researchers in the room walked out thinking a little differently. I know that there were a lot of advocates in the room who really appreciated the session – because we always are thinking about this side of diabetes!

I do, however, have a challenge for the organising committee. As excellent as this session was, it could have been even better if they had dedicated some of it to hearing from people with diabetes talk about this issues being discussed by the clinicians and researchers. That would have really brought home the message. Perhaps next year…?

Disclosures

My flights and accommodation costs to attend the Roche Blogger #DiabetesMeetUp were covered by Roche Diabetes Care (Global). They also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products, however I have shared my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.

Routines help me function and help with smoke and mirrors appearances that make me seem an effective adult. Yesterday, my routine was accidentally thrown out the window. And then everything went to pot.

We can blame jet lag. We can blame the frantic running around after getting out of bed late. Or we can just blame me.

My every-morning routine looks something like this:

Step 1. Check my BGL, calibrate my CGM and do an adjustment bolus if necessary.

Step 2. Get out of bed.

Step 3. Rifle through my underwear draw (taking my underwear into the bathroom with me).

Step 4. Shower, dry off, slather on moisturiser, put on underwear.

Step 5. Reconnect my pump, shoving it into my bra.

Step 6. Brush my teeth and don’t return to the bathroom.

And then, for the rest of the day, I am confident in the knowledge that I have my insulin delivery device attached to my body, delivering insulin.

This routine works.

Yesterday, the routine got messed up. I forgot step 3 – I walked straight into the bathroom without my underwear, which subsequently meant that step 5 didn’t happen. And it didn’t happen later as I did the rest of the getting-ready-for-work-and-out-the-door

I drove into the city to the hotel that was hosting the meeting I’d be sitting in for the remainder of the day. First things first, I grabbed a coffee and at that point, I reached down the front of my dress. My bra was empty (well, okay, not completely empty, but there was no pump in there). Startled, I started patting down my body trying to locate my external pancreas – no idea where I thought I’d put it, especially considering I was wearing a very fitted dress.

I felt the nib of the cannula part of the infusion set on the side of my stomach. It was sharp because it didn’t have the disc from the tubing connected.

And then I cursed. A lot.

I weighed up my options.

Option 1: Retrieve my car from the valet parking and drive back through peak hour traffic to collect my pump from home and miss the important first session of the day.

Option 2: Curl up in a corner and cry.

Option 3: Work with whatever was in my diabetes spares bag.

Option 4: social media the crap out of how I am #NotGoodAtDiabetes.

While option 2 was preferred and option 4 was a given, I activated option 3 and set to work.

I’d already been disconnected for about an hour at that stage so my glucose levels were creeping up, almost, but not quite, in double figures. I did some calculations in my head and gave myself a bolus using the syringe and insulin from my spares bag.

And then, every hour or so, I checked my glucose levels and bolused manually as necessary. Obviously, eating low carb was the order of the day (I threw out my morning coffee, not really wanting to have to bolus for the milk and sugar).

By the time I eventually got home in the late afternoon, I was sitting around 11mmol/l – the highest I’d clocked all day. I reconnected my pump, so happy to be reunited.

But geez did I feel foolish.

Last week at ATTD, one of the speakers had a similar experience that he tweeted out, and I spoke with him about it later that day. ‘But the pat down! Didn’t you notice when you did the pat down?’ I said, demonstrating my usual routine (more routines!) of standing at the front door, putting my hands over my body making sure that my pump was where it was, my CGM is secure and doesn’t require more tape and the cursory glance into my handbag to locate my BG meter, phone and diabetes bag.

And then others at the table – mostly made up of people with diabetes – spoke about their version of the ‘pat down’. We all had one.

So what did I learn yesterday?

I learnt that throwing the morning routine out the window (even if not deliberate) is a very silly idea! I learnt that despite sixteen years under my belt of wearing a pump – a device from which I have NEVER taken a break – I can still leave home without it. I learnt that I really, really don’t enjoy injecting insulin throughout the day. I learnt that my diabetes spares bag is the best thing ever. I learnt that I should never take the convenience of my pump for granted.

And most importantly, I learnt that this is something that so many of us do as I was flooded with messages from friends asking if I was okay, needed help and sharing their stories of doing exactly the same thing!

Inside the diabetes spares bag.

Paris was, as always, wonderful. The mild weather, meant it was lovely to walk everywhere. With only three and a half days in one of my favourite cities, I was grateful for the daily 40-minute stroll from the hotel near the Eiffel Tower via the Trocadero to the conference centre so that I at least get to see some of the city.

Even early morning meetings were bearable with views like these. (Hashtag: not photoshopped!)

Sunrise behind the Eiffel Tower.

On my first full day in the city, I attended an event hosted by Roche (all my disclosures are at the end of yesterday’s and today’s posts, as always). The Blogger #DiabetesMeetUp brought together almost 40 bloggers from across Europe. And me.

The day’s activities were a continuation of their event at EASD last year (read about that here), although attendance was expanded to also include a contingent of fabulous women from Italy. It was actually the fourth #DiabetesMeetUp event hosted by Roche with many of the attendees having been to all of them. (There was a comment when I tweeted a photo of the day that the group didn’t look particularly diverse. I’m flagging that here because I acknowledge the privilege in the room. I do think that it is important to ask how better representation can be achieved. The flip side is that the event targets bloggers, so there is already a bias for well-connected and informed people. I have no answers….)  

Just some of the bloggers…

The day was busy and very interesting. I have been an extremely vocal critic of device companies failing to engage with consumers in the early stages of device and software development. It frustrates me no end when I hear of the limited and barely tokenistic engagement undertaken by device companies so Roche’s approach is truly a breath of fresh air.

It was also pleasing that while some of the day was dedicated to showcasing product, there was a lot more than that on the agenda. Plus, all product presentations were an opportunity for the bloggers to provide feedback, plus there was plenty of frank discussion from both attendees and Roche staff.

So, what devices where on show? There was some more about the Roche Insight CGM, mostly about the app that is being developed to accompany the device. When this was discussed at the EASD #Diabetes Meetup last year, there were many suggestions and recommendations about how to improve the app platform. It was utterly brilliant to see a lot of those changes integrated in the new design. Obviously it’s a lot easier to make changes to software rather than hardware, but still this focus on gathering feedback and then making the changes is commendable.

One of the most exciting aspects of the discussion for me was the discussion around the Insight systems alarms, specifically the language being used. Some of the words and phrases were flagged as not being quite right, and there was an opportunity to wordsmith just what language would be used. For example, the term being used was ‘warning system’ and I questioned if that was really the best word available. I think of ‘warnings’ as something connected to inclement weather or danger on the roads, not really ideal when thinking about data I use to help manage a health condition each and every day.

Talking language. It was hard to get the microphone away from me.

The customisation of this system is outstanding. Other than the super-low (safety) alarm, all others are fully customisable, can can be activated for certain times of the day, use different sounds for different alarms for different times and the user can build up to ten daily profiles. The objective for such thorough customisation is to work towards reducing alarm fatigue as well as create a more flexible, individualised and intelligent alarm system

As yet, there is still no integration with the Insight CGM and the Insight pump – a criticism and recommendation from the group back at EASD last year, however I believe this is on the radar. Undoubtedly, the feedback from the group was that this is essential, so I hope that the Roche team find a way to make it happen!

The other product that was (very briefly) discussed was the Senseonics Eversense system – a ninety day implantable CGM sensor and data management system. This tech is currently in trial stage and more information can be found here.

Roche gave all the Blogger #DiabetesMeetUp attendees a press pass to ATTD which meant that throughout the remainder of the conference, there was a significant consumer contingent roaming the halls and sitting in sessions. Considering that this is a group of highly connected, tech-savvy and smart individuals, it was terrific that there was the opportunity to be part of the conference amongst the health professionals.

I’m really grateful to have been offered the opportunity to attend the day – a very big thank you to Ute and the team from Roche for extending an invitation to me (I promise, I am not always the jet lagged mess you see at these events!) and for your ongoing commitment to engaging the community. As well as participating in the agenda set by Roche, I was able to speak to some amazing and activists who each day are advocating for people with diabetes in their own countries. The level or excitement and commitment to what they do simply never wanes.

Disclosures

My flights and accommodation costs to attend the Roche Blogger #DiabetesMeetUp were covered by Roche Diabetes Care (Global). They also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products, however I will be sharing my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.

There is so much around at the moment that I wanted to write about properly. But it’s holidays and there is champagne and my kid made brownies with toffee popcorn on top and the neighbours came over for drinks and didn’t leave and I need to pack to go to New York.

So here are some links for some holiday reading.

THIS piece

The title of this piece sure seems to have riled up some people, but bloody hell, just read it. Anna Floreen, who is pretty damn awesome, has written this fabulous piece, sharing her experiences of going through the teen years with diabetes. A must read for parents of kids with diabetes to get some insight into what young people think about dealing with diabetes.

THESE biscuits

These have become my holiday favourites this year and I’ve made about 4,326 batches of them! Four ingredients, super-dooper easy, delicious and look impressive. Plus, they are gluten free, so great as a gift for friends with coeliac disease. What more could you want?

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I’ve had the recipe for them scrawled in my recipe book for years – I can’t remember where I first copied it down from – and this from the New York Times is pretty much how I have been making them.

THIS news

Great update about the work Ed Damiano is doing on the Bionic Pancreas just published in The Lancet. The study has shown some pretty exciting results. It’s getting close – really close – and that is just so damn exciting! Maybe we can out one on our Xmas lists next year…

THIS study

If you are a young woman (aged between 16 and 25 years) living in Victoria, Australia, you can take part in a women’s health study, which is looking at the relationships between lifestyle behaviour, physical health and mental wellbeing.

You’ll be reimbursed for your time, so get involved! All the details are here.

THIS poorly worded sign

For the love of all that is good: proof read, people. Please, proof read!

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THIS good news

Great news from the Australia Diabetes Society who has just released a new position statement about scuba diving and diabetes, recognising that motivated individuals with well-controlled diabetes (both insulin-requiring and non-insulin requiring), may be able to safely participate in recreational diving.  

THIS story

You know, there are some people in the DOC world who are worth their weight in gold. Lou Vickers is one of them. Read her story here.

THIS (slightly old) article

This piece, from Dr Katherine Barnard and Dr Jill Weissberg-Benchell, was published just after ATTD this year (back in Feb) and provides comment on the relationship between diabetes technology and psychosocial aspects of diabetes. A very interesting read, especially considering the way DTech is moving!

THIS position statement

 The National Health and Medical Research Council and the Consumer Health Forum of Australia have released a revised statement about the involvement of consumers in health and medical research. 

THIS time of year

So, we’re heading off for a couple of weeks and I’ll occasionally be checking in, but probably not much as we’ll be spending a lot of time trying to keep warm on the cold streets of New York.

Thank you so much for reading, commenting and sharing Diabetogenic this year. The love and support I constantly am afforded by people who read posts here is astounding and makes living with diabetes that little bit easier. I wish I could adequately say just how grateful I am.

I’m looking forward to an exciting 2017 – there is already so much on the horizon with exciting projects, collaborations, activities and plans being hatched. It’s shaping up to be a very busy year, so I’m looking forward to a little downtime over the holiday time.

Season’s greetings to you all. I hope you manage some rest, relaxation and quiet reflection in the coming weeks. I’ll see you in the New Year.

Season’s greetings from my clan to yours.

Today, I gave a talk to healthcare professionals at a hospital in outer Melbourne. I was invited months ago after the organisers heard me speak at another event, and they wanted me to speak about living with diabetes.

As I said in the introduction to my talk, I am dead boring. Plus, I am only one voice. So, to create some balance and some interest, I reached out through Facebook and asked this:

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As usual, the online community didn’t disappoint. I had over forty responses and weaved them into my presentation, adding real impact to what I was saying, reinforcing my comments with the comments of others walking a similar path of life with diabetes.

I started by asking the audience a question…

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And then I said that I would be talking about life with diabetes. Except, I reminded the audience that life with diabetes was very different depending on where in the world you were diagnosed and that my story is about my ‘first world diabetes’ and I checked my privilege almost as a disclaimer.

I used that point in my talk as an opportunity to speak about those who cannot access or afford insulin and how this is simply, not okay. I could sense the surprise in the room as I said that people are dying because of lack of access.

 

Then I spoke about what diabetes is to me and here is what I said:

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It’s boring and tedious and frustrating.

experts

It’s made me an expert. And that we need our HCPs to acknowledge the hours and hours and effort we put into managing our own brand of diabetes and the expertise we develop from living so closely with this condition.

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It’s about humour – because laughing is a tool I use to get through this and that’s okay.

jrwiv9f2It’s about words, because language matters and sticks with us forever.

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It’s about stigma. I asked if they could think of another condition that was so stigmatised and surrounded by blame – and that while we experience it with type 1 diabetes, I said that I believed my brothers and sisters with type 2 diabetes have it so much worse.

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It’s invisible – despite the bright blue patch surrounding my Dexcom, most of the time it is hidden away and not on show for all to see.

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It’s about people and community and the DOC and the people that are like the air I breathe – without whom I would not be managing at all.

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It’s about my family. And then I explained, fighting back tears, that this is the hardest part of life with diabetes for me. I’ve written about it a lot, spoken about it often. But thinking about how diabetes impacts on Aaron and the kidlet breaks – absolutely shatters – my heart into pieces. The worry I cause my parents makes me feel guilty and resentful. And every day I regret the time I told my sister that my life expectancy had been cut thanks to my type 1 diagnosis because I will never forget the look in her eyes indicating the pain I had just caused her.

I answered a couple of questions and then my talk was done. I thanked the audience for listening, stepped down from the stage, took a deep breath. Someone came up to me as I was gathering my bags and said that she learnt more about real life with diabetes in that talk than in all her years nursing.

This is the power of story telling. The comments I read out and shared have so much power in them. We need to keep telling our stories, turning the way we talk about diabetes on its head. It’s not about the numbers, the tools or anything else. It is about people.

Thank you so much to everyone who shared their comments with me on my Facebook post yesterday and today. 

Oi!!!!’

‘Hey!! Hey!! Oi!!’

I have a particular look that I reserve for men who yell at me from passing cars. Admittedly, this look is employed far less frequently than when I was a younger lass, but occasionally, it still does need to be used.

And today, the thunderous look of complete and utter disdain was on my face, and the choice words I was going to use to accompany it were forming on my lips as I turned to the person who was shouting at me from their car which was actually stopped at a set of lights as I crossed the road in front of it.

It took me a moment to realise what was going on, but there was a man, half leaning out the window of the passenger side of the car, flailing his arms around and, once he had my attention, yelling ‘Look!!! Look!!!’

I looked.

And there, on his arm, he was sporting a CGM. Just like me – mine circled by a dark blue RockaDex patch; his with a bright green one.

I jumped up and down (by this time I had safely crossed the road) and yelled back. ‘Oh my god!!!! Hey!!! Hey!!! We are totally best friends now!!!’  I was waving my arms around as well, absolutely not caring how ridiculous I looked.

The lights changed and the car took off. He gave me a last smile and yelled good bye. And I waved at the car, standing there on the side of the road, laughing out loud.

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Today, I just want to follow up a little about one of the points I wrote about yesterday in my post about the event I attended on Tuesday evening about diabetes-related foot complications, specifically this point made my A/Prof Ramon Varcoe:

He explored how we make people with diabetes know this technique for saving limbs is available, and said that it is really, really important to inform PWD about it so that they can ASK for it and not just accept a diagnosis of requiring an amputation. He said that this was the group that could really drive change here, by demanding that they have the best treatment possible.

This had me thinking long and hard. I agree with A/Prof Varcoe here, but that is not really a surprise. I am so much about consumer-led healthcare, that I dream about it (sad, but true).

Mostly, I thought about it in context of my own diabetes care and how it has happened that I am such a DTech nerd. I decided after about two years of living with diabetes that I wanted to use an insulin pump. I really just could not get the hang of the MDI situation I had been put on at diagnosis and was the living embodiment of why Protophane was referred to as Protopain.

I went to an information session and heard a women speaking about how much she loved using an insulin pump and what a difference it had made for her quality of life. Afterwards, I spoke with her and by the end of our chat, was convinced. I wanted one of those! (Impressionable little thing, aren’t I? #MarketersDream) This woman would become my pump trainer and the only diabetes educator I have ever seen.

At my next endo appointment, I marched in with the research I had done, the questions I needed answered and an expectation that by the end of the consultation, I would leave with details of how and when and where I would be getting my pump. Ha, the naivety!

My endo was absolutely not keen for me to take the pump road, ‘You’ve not had diabetes long enough,’ he told me, which confused me no end, because it already felt like a lifetime. ‘I think we should talk about this again after you’ve had diabetes for about 5 years. Yes?’

Well, no. That was the last time I saw him. I spent the next six months endo shopping until I found one that (I was promised) would agree to helping me on a way to a pump. I walked in and made it very clear why I was there and he nodded straight away. ‘Yep – we can do that,’ and picked up the phone. And about three months later, I was a pumper. This particular endo and I parted ways not long after because I needed someone who was far more expert in the diabetes and pregnancy track I wanted to embark, but I have always been grateful that I found him and his open attitude to diabetes technology.

When CGM was launched into Australia, I spoke to my diabetes educator and asked her to fill in the required paperwork to get me sensing. She sent the form off the day we spoke.

And the same has happened when I have wanted to change or upgrade diabetes devices.

What I am trying to say is that this has all been led by me. So when A/Prof Varcoe spoke about the importance and value of connecting with PWD and telling them about these new vascular procedures to save limbs and prevent major amputations, it made perfect sense. He urged that we needed PWD to be the ones who, if told they needed to have an amputation, spoke up and asked for a second or third opinion, specifically asking about the very procedure he had just discussed.

This ground swell of action is what causes change, but we need to know exactly what to ask for. It’s far more effective to ask the question ‘Can my artery be revascularised? I understand there is surgery than can do that and may prevent the need for a major amputation.’ rather than just ‘Is there nothing more than can be done?’

So many of the people with diabetes I know are using particular drugs or devices because they have asked for them – not because they were recommended or suggested by their HCP. And this is why PWD need to have all the information. This is why device companies should be going straight to the consumer to share information, not expecting it to happen through HCPs. (I know that there has been discomfort from some HCPs at Abbott’s direct to consumer promotion of Libre – and the fact that PWD can order themselves without needing to see a HCP, but why would that be the case?)

But it is more than just making sure the information is there for PWD to know and see. It is a complete and utter reshaping of a system that a lot of times actually isn’t about empowerment. There are still too many ‘old school’, patriarchal attitudes that dictate care choices to the PWD instead of accepting and encouraging us to lead the way for our own care. I think things are changing, but I also think they are changing far too slowly.

Sometimes, the best diabetes meetups involve a few people with diabetes just sitting around having a chat. Perhaps it’s over dinner, or maybe over a coffee. There’s no formal agenda, there are no official speakers. It’s just people with diabetes catching up and talking.

Now, multiply that by … a lot. In fact, put about 40 diabetes advocates in a room together. Throw in a few HCPs as well. And some people from industry. Hell, there may even be a few people from professional and consumer diabetes organisations in there as too.

Now you have #DOCDAY; a diabetes meetup on steroids!


The second annual #DOCDAY event was coordinated and hosted by Bastian Hauck at EASD in Munich. Last year, he had this idea and organised what he thought would be a few people in a café in Stockholm. He underestimated how many people would want to attend, and the room was overflowing with advocates from Europe (and the usual Aussie ring-in).

Dr Andrea Orecchio, right, with Danela D’Onfrio from Portale Diabetes (an Italian diabetes peer site).

This year, he got smart. He hired a room at the conference centre which was a genius move because it not only meant it was so simple and convenient to get to, but it also meant a whole heap of HCPs came along too. (Big hat tips to the divine trio from AADE, Hope Warsaw, Deb Greenwood and Nancy D’Houln, Aussie Dr Kevin Lee, and the delightful Dr Andrea Orecchio from Switzerland who impressed me with his ability to speak (and tweet in) four different languages. Perfectly fluently.)

There was no real structure to the meeting, apart from the insistence that all attendees have their photo taken on an old-school Polaroid camera to be placed on the attendee wall. Bastian kicked off the afternoon, saying a few words and he also asked some people to talk about any exciting diabetes initiatives they’ve been involved in. He asked me because he knows that in my jetlagged state I’m likely to say something inappropriate which will lighten the mood.

I was absolutely enthralled and excited to hear of some of the work other diabetes advocates have been up to lately.   Here is just a taste:

Cannot wait to see this book published!

I simply cannot wait for the release of this new book from the team at Anna PS. Anna Sjoberg and Sofia Larsson-Stern from Sweden have collected stories from 20 people with diabetes and will share their personal experiences of lives with diabetes. The Swedish version of I Can, Want and Dare will be out in time for World Diabetes Day, and the English-language edition will follow shortly after. You can pre-order here. What a brilliant Xmas stocking filler! (Disclosure – Anna and Sofia invited me to contribute to the book. I have no financial interest in the book.)

Med Angel.

Did you know that 93% of people using temperature-sensitive medications are doing it wrong? Neither did I! Amin Zayani has created a very nifty smart sensor and app to help you know if your insulin is being kept at a safe temperature. This is a super easy device to use and is all about safety. I know I can certainly be accused of being very relaxed about keeping may insulin at optimal temperature and (touch wood) have never had a problem. But just at this conference, I was speaking with someone whose insulin had been affected by temperature and was absolutely not working. At all. This is something that will be very handy for a lot of people! Follow Med Angel on Twitter here.

IDF Europe has introduced a social media prize in diabetes. Quite frankly, the DOCDAY room was full of worthy recipients. Nominate someone now!

Peer networks in France with Paul-Louis Fouesnant.

I always love hearing about grass-roots diabetes support initiatives, and Paul-Louis Fouesnant from France spoke about Diab’ Mouv peer events he organises regularly.

So what did I speak about?

I spoke about driving and diabetes, specifically the advocacy win we have just had with the launch of the new Australian Assessing Fitness to Drive Guidelines. (More about that later this week.)

I spoke about CGM subsidies, a hot topic everywhere, but particularly in Germany where a reimbursement program had just been announced.

And finally, I spoke about language, because EASD is one of the most challenging conferences when it comes to language. I spoke about why language matters and why the real changes that are being made in this space are driven by people with diabetes. We have been talking about this for years and years now and it is terrific to see it (finally) on the agenda.

By the end of the afternoon, I was overwhelmed by all of these incredibly inspiring folk. For most of them, this is a labour of love with little, if any, financial reward. We blog because we want to share our stories and connect – nothing more. We come together to share our successes and our frustrations because we know that this is a sympathetic group who ‘get it’. Between now and when or if we next get together, we will keep in touch and continue to share our stories because that’s what we do. Thanks to everyone there for being so generous with this bumbling, jet lagged mess.

Just some of the advocates, activists, bloggers and HCPs in the #DOCDAY room!

My disclosures for my attendance to EASD2016 can be found on this post. 

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