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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.

Yesterday, on her first day of school, the kidlet’s English class was about autobiographies. So, we had a long chat about some biographies and autobiographies we’d read – and ones we wanted to read – and why they are a really important way for people to share the stories of their life.

Story telling is one of the most powerful ways to record events, emotions and life experiences. Others who may be going through similar experiences can feel great comfort knowing that others have not only lived through certain situations, but stuck around to tell the story! And it is also a fabulous way to share stories with those not familiar with different places, circumstances or surroundings.

Our stories have the ability to inspire, offer an opportunity to learn, and help make sense of things around us.

So, it took me no time at all to respond with a resounding ‘YES!!’ when I was contacted by Anna Sjöberg from Anna PS and Sofia Larsson-Stern from Diabetesia, asking me to be in their book about people living with type 1 diabetes.

The ebok-produktbild-engnd result of their hard work is a fabulous book – ‘We can, want and dare …and we have type 1 diabetes!’ – and it features people from all over the world telling their stories of life with type 1 diabetes.

When putting together the book, Anna and Sofia wanted to provide real-life stories from people with type 1 diabetes from all walks of life: from kids and teens
(such as this one who is, quite simply, AMAZING!) to adults doing all sorts of amazing extraordinary, and every-day things. There is a Brooklyn-based chef, an incredible young advocate from Sweden and another Swede whose Instagram profile describes him as a Multisport Team Ninja Warrior! Oh, and a Melbourne blogger and activist.

The books was launched it its original Swedish-language version last year on World Diabetes Day and the English-language version has just been launched and is now available.

This book is not just for people with type 1 diabetes, although, with its stories of hope it certainly would be a wonderful thing to give someone newly diagnosed! It is also for friends and families of those living with type 1, and people who really have no significant connection to type 1 diabetes, because it provides an understanding of the complexities of the condition that we live with and offers a very personal insight into life with type 1.

You can order your copy of the book here.

GIVEAWAY GIVEAWAY GIVEAWAY

I have three copies of ‘We can, want and dare …and we have type 1 diabetes!’ to give away to Aussie-based readers of Diabetogenic, thanks to the team at Anna PS. Just click here and send me a message telling my why you would like a copy. Keep it short – brevity is key here!

DISCLOSURE

I was invited to provide my profile for the book and received no payment for my contribution. I will receive a signed copy of the book for my bookshelf, though, and can’t wait to see it!

Back in 2012 when we were thinking of starting the #OzDOC weekly Twitter chat, Kim, Simon and I were committed to making sure that it was a safe place, welcoming to all who wanted to use it. We encouraged people to actively participate, lurk in the background, jump in and out as they needed.

I had always been so impressed with the non-toxic and inviting place the #DSMA chat was, welcoming people with all types of diabetes as well as a few health care professionals, and I hoped that we could replicate this environment, albeit on a smaller scale, with #OzDOC.

Pleasingly, that’s the way it started and now, it continues to be that way. While I’m no longer involved in the running of OzDOC, or moderating its weekly chats, whenever I do drop by to participate, it is clear that the safe and inclusive model that formed its foundation continues.

It has been great to see that the encouragement of healthcare professionals to join in – lurk at first to get the idea and then respectfully participate – has continued, and frequently, a DNE or dietitian or endo will pop in and contribute.

But last night, during the chat, there was an intrusion that was not respectful. In fact, I likened it to someone bursting, uninvited, into my house and yelling that they didn’t like the way we’d decorated it and then offering to fix it as long as I paid them. I bristled immediately. And felt protective of the people in the #OzDOC room who had been so candidly and honestly sharing their thoughts.

This was a particularly delicate chat. Ashley had more than expertly navigated the sometimes tricky waters of a discussion about the place diabetes fits in our lives, and ended the chat with a question about burn out. It is a testament to the space that is #OzDOC to just how candid and honest people were in their responses.

So, the idea that someone tweeted something about how so many participants were clearly living with ‘out of control’ diabetes and then linked to her fee-for-service website, was not only inappropriate, but also insensitive, thoughtless and showed a true lack of understanding of what people with diabetes are dealing with.

My mother hen instinct kicked in. I had just laid myself bare as I used words that describe burn out to me, and others had as well. This was absolutely not the moment to promote a business and, at the same time, tell people they were doing a crappy job at managing their diabetes. And there is no place for judgement in this chat, especially from someone so clearly out-of-touch.

While my response was somewhat reflexive and probably could have done with a moment away from the keyboard before hitting the ‘tweet’ button, I don’t regret that I did it. And the responses from others in the chat suggested they too were feeling uncomfortable about the intrusion to the discussion.

I was furious that someone had so aggressively and judgementally invaded the safe space that has been so carefully cultivated. ‘Out of control’ diabetes? Really? Fuck off. (Actually, that was the response I wanted to type, but kept myself nice, so maybe I wasn’t as harsh as I thought.)

My concern about this intrusion was twofold. Primarily, I would hate for any person with diabetes to feel afraid of participating in any sort of peer-based activity for fear of being judged. We get enough of that outside of the spaces we create for ourselves and certainly shouldn’t have it forced upon us in our own groups.

But also, I would hate for any HCPs to think that they are not welcome to participate. They most certainly are, however the respect, lack of judgement and kindness expected by participants is expected of everyone. If they are unable to demonstrate that, stay away.

I’m not naming and shaming the person who tweeted last night. The tweet has been removed anyway. But, I would absolutely encourage them to come back next week and the week after and the week after that to learn. Watch what goes on in these chats, listen to what people are saying, understand the real-life sensitivities of diabetes.

And then, feel free to softly, softly join in. Respectfully ask questions (after asking if it is okay to ask questions) if there is something that needs clarifying. Gently share ideas that may be of benefit. But absolutely do not try to sell something. And check your judgement at the door.

no-judgement

One of the discussions at #MayoInOz turned to the divide between personal and public social media use – especially relating to our loved ones. ABC National Medical reporter, Sophie Scott, explained the rules she’s put in place to define her professional and personal life, trying to keep the two distinct to protect her children.

It’s something I frequently think about. I use social media a lot. But despite possibly appearing to be a (social) media whore, I have rules about how I use it when it comes to my family – especially our child. The first photo I posted of her was when she was three years old. She is standing in the front garden of our old house, under the weeping silver birth tree, dressed in one of the fairy dresses that was on frequent rotation at the time. She has a cheeky smile on her face and looks quite delicious. I’ve since posted baby photos of her – usually around her birthday and on the pregnancy diary I recently published.

These days, she gets to veto whether or not I post a photo of her. If she is happy for me to share, I do. If not, I don’t. She often asks who will be able to see the photo before deciding if it is okay for me to share it.

But when she was wee, I had a very easy rule for sharing photos of her. If I wouldn’t share a photo of me doing something, I wouldn’t share a photo of her doing the same thing. So, no photos of her in the bath, naked on the floor on a towel, throwing a tantrum, crying, when she was sick, doing something embarrassing or looking grumpy. I don’t want photos of me in any of those situations online, so how could I justify it as okay for me to post photos of her like that – even if she is a kid?

This isn’t necessarily about me being worried that someone is going to do something nefarious with the photos. It’s about how she’d feel knowing others have seen her like that.

The same goes for sharing stories about her. I would never tell a story that would embarrass her – now or later in life.

The discussion at the conference turned to how parents of children with health conditions and disabilities share photos and stories of their child, perhaps not thinking about the repercussions for their child. I have commented on this in the diabetes world, and been told in no uncertain terms that I don’t get a say in this discussion as my child does not live with diabetes.

I understand that my perspective on diabetes – diagnosed as an adult – is very different to that of a child’s or the child’s family. But I am an adult with diabetes. And when I see a photo of a kid in hospital with tubes coming out of them because they are in DKA, all I can think about is how that child is feeling at that exact moment.

I’ve had a couple of DKA hospital admissions thanks to gastro bugs. I am not being melodramatic when I say that I felt that I was about to die. Between the throwing up, unstoppable nausea, desperate need to quench my thirst, weakness, rapid heart rate and feeling terrified, all I wanted to do was curl up and feel better. Or die. I would be horrified if someone shared photos of me at such a vulnerable time. I don’t want anyone to see me like that – ever.

The same goes for when I am having a weepy hypo, unable to stop the tears or the unintelligible stream of consciousness babbly coming from my mouth…or a giggly hypo where I am borderline hysterical. I don’t want that recorded for all to see. (I once filmed myself having a scary low and when I watched it back a couple of days later, it was truly shocking. I deleted the video, terrified that it would somehow find its way onto YouTube or Facebook – probably posted by me when I was next low!)

When I’ve asked parents of children with diabetes about this, they say that they do it as an awareness-raising opportunity. By showing their kid during the more serious diabetes times, they feel they can give an accurate picture of life with diabetes. It shows the pain and the fear and the relentlessness of it. I understand that – trying to tell the story of diabetes in a way that resonates with those not actually living with it is important. It’s one of the reasons I share my story.

But how do we do that without it seeming almost exploitative – especially if the story or photos we are sharing is actually not directly ours?

I was glad for the discussion at #MayoInOz, because I’ve started several posts about this issue, but have always felt clumsy and as though I am overstepping. I still hear the words ‘You don’t get a say’ and delete whatever I have written for fear I will be chastised and told to step away.

But after the conference, I decided I did want to write about it and, perhaps, start a discussion that points specifically to the diabetes world. Where is the line drawn between showing the world what diabetes is about and exploiting or exposing our loved ones? And who gets to decide? Is consent an issue here? Or is the child’s story inextricably tied up with their parents and therefore there is no line?

Thankfully, someone has written about this in a far more eloquent and elegant way! One of the other scholarship winners at the conference was Carly Findlay. Carly is a well-known blogger, writer, speaker and appearance activist, and this piece she wrote last year is definitely worth reading. (She’s also a genuinely nice person who didn’t even flinch when I once accosted her in Lygon St, almost yelling at how beautiful she looked at her recent wedding because she absolutely did and I just needed to tell her, in a ridiculously excited and animated manner. She was most gracious to this bumbling mess!)

Postscript

I don’t think I have really done this issue justice. I do know that some of my favourite bloggers are parents of kids with diabetes and I think that is possibly because I have never felt uncomfortable about what they have written. While Annie Astle is a very, very, very good friend of mine and my family’s, she is also a brilliant writer and when she shares her family’s story, it is never at the expense of Pumplette’s dignity. (Annie’s own dignity is often given a bashing because she is so bloody self-deprecating!) I recommend her blog to every parent with a newly diagnosed child because her posts are beautiful, honest and never manipulative.

What a week. World Diabetes Day (WDD) is over for another year, but there is still lots going on in the diabetes space and in my life in general. Here are just some of the things making my brain a minestrone soup of dot points.

Mayo Clinic in Oz

I was lucky enough to win a scholarship to attend the Healthcare and Social Media Summit run by the Mayo Clinic earlier this week. I haven’t even started to pick apart all the amazing things I learnt during those two days, but there will be more to come soon.

Crown

Downtime is bloody hard to come by these days (because: November). BUT!!!! Binge watching a new show helps with some mindless entertainment and winding down at the end of the day. And Netflix has come to the rescue with The Crown. I admit that this is just a space filler until the REAL EVENT…But in the meantime, it will do and is actually super enjoyable.

Talking diabetes without being rude

We often see ‘Things to not say’ lists. I wrote one here where I suggested the only thing to say to someone living with diabetes was to offer them a Nutella cupcake.

I still stand by that advice, however thought I’d use WDD as an opportunity to write a more comprehensive list and it was published on the Mamamia Women’s Network. You can read it here – and may want to consider sharing it widely.

One of the things that we need to aim for is talk diabetes OUTSIDE our diabetes world. This article was not written for people affected by diabetes – we already know to not say most of these things. It is for those who say the annoying things because they don’t really understand diabetes.

So – have a read. And then share it around. And add your own ideas in the comments section on the Mamamia page. Let’s see just how far this can go to stopping some of the comments we hear over and over and over again!

Gilmore Girls

One week to go. We are ready!

WDD Twitter Marathon

The force of nature that is Cherise Shockley managed to pull off (once again) a 24 hour tweetchat for World Diabetes Day that included moderators and participants from all over the globe with an impressive variety of topics.

There was a bit of national Aussie pride in there with 4 hours of the chat being moderated by advocates from Down Under. I moderated an hour – with a focus on diabetes stigma – at 5pm ET which was 9am (Wednesday 15 November) AEDT, meaning I was into hour 27 of WDD when it was my turn to ask the questions.

Blue fatigue

My hand is a pretty damn good indication of how I am feeling right now. Still hanging in there with the whole ‘go-blue-diabetes-awareness-rah-rah-rah’ thing, but only just. Half way through Diabetes Awareness Month; World Diabetes Day is over and I am really feeling a lot of blue fatigue.

It seems that I am not the only one. Kerri wrote this on Six Until Me the other day and it resonated with a number of people, me included.

But the people; the people!

I was lucky enough to spend World Diabetes Day with some great diabetes people. We had house guests from Germany with us and my neighbour Jo popped in for a bit too. And my Amazing family were also there and, you know what, we hardly spoke diabetes at all!


It reminded me that my diabetes world is about people – those I’ve met; those who support me through it all; those I connect with online and in real life. And I know that I couldn’t do this without them to help me through.

#IFLGseesawchallenge

And finally, diabetes is such constant balancing act, and I don’t know about you, but I rarely manage any semblance of equilibrium!

So, I love the Insulin for Life Seesaw campaign – as both a metaphor for diabetes and also as a way to raise funds for an important cause.

Get involved by uploading your photo depicting the seesaw challenge of living with diabetes. Add the tag #iflseesawchallenge to your pic and Medtronic Australia will donate $1.25 to Insulin For Life Global. $1.25 is the amount it costs to transport a week’s worth of insulin to someone in need in a developing country.

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. 

We watched the movie Looking for Alibrandi with the kidlet the other night. I remember when the book came out. I’d left school, was in first year at Uni, and still trying to work out who the hell I was. My mum, sister and I all read the book and couldn’t stop talking about it.

That book was one of the most important things I read when I was younger, because it resonated so much. The idea of not understanding where I belonged had shaped a lot of my adolescence, and was continuing to confuse me as a young adult. I know I wasn’t the only one feeling like that – many kids of post-war migrants felt the same way. Not that we really spoke about it, which was why Looking for Alibrandi was so important. It put into words the jumbled thoughts in my head.

My parents moved from Italy to Australia in the late 1940s (my dad) and early 1950s (my mum). They both grew up here – all their schooling was in Australian schools. They speak English perfectly without a hint of an Italian accent.

We didn’t speak Italian at home, and weren’t particularly involved in the Melbourne Italian Community. Most of my parents’ friends were not Italian, and I only had very, very few Italian friends. At secondary school, there were a number of Italian girls whose families would have been similar to mine, and yet they weren’t the girls I hung out with.

I wasn’t really sure where I fit. I didn’t belong with the Italian girls, because their parents were all a lot stricter than my kinda strict parents; they all spoke fluent Italian – often to each other – and were more involved in the Italian community. Equally, I didn’t really feel that I belonged with my ‘Aussie’ friends because they totally didn’t get the overprotective Italian father thing I had going on at home. Or my love of Fiats. (Or that we had Nutella in the cupboard at home!)

I was in this kind of middle ground that left me wondering where I belonged. And it is a position in which I find myself again today in the diabetes world.

I am a person with diabetes. But for the last 15 years (so, for all but 3 of my diabetes life) I have worked for a diabetes organisation. It leaves me in a unique position that brings great opportunities and privilege, but also makes me feel like a complete outsider at times.

HCPs are confused by me and sometimes suspicious of my vocal advocacy on engagement and the power of peer support; others with diabetes are sometimes wary because they wonder just how free I am to be open and honest about my diabetes; within diabetes organisations I am seen as someone who has fingers in many, many pies; global advocates are curious about how I manage to write this blog while still being in paid employment with a diabetes organisation. To avoid confusion (frequently my own), I speak differently depending on the audiences I stand before, and adapt my tone and language and stories slightly to suit HCPs, PWDs, industry reps or government people.

But essentially the stories are all the same and it is my voice telling the stories.

Next week, I’ll be in Munich at the European Association for the Science of Diabetes (EASD) Annual meeting. The EASD conference is an interesting one. It is very ‘rats and mice-y’ – the term I use for conferences where I look confused in most of the sessions because I have pretty much no idea what is being said, however understand enough to know that someone, somewhere has managed to cure diabetes. In mice.

Despite it’s very science-focused content which attracts very science-focused folk, I feel very ‘right’ at this particular conference, because there is a wonderful advocate, blogger and consumer satellite program that means the city is full of ‘my people’. And that is why I am there – for those events.

If I feel as though I don’t belong at EASD, it’s because I am the only Australian advocate there. I have travelled the furthest distance, I am jet lagged for most of the time and people have trouble understanding my accent. But the Italian contingent at the advocate events claim me as one of their own (albeit one of their own who doesn’t speak the language), so at least I feel that I fit somewhere.

So at least for next week, I’ll know my place. And it will be alongside some of the most dynamic, clever, passionate and dedicated people I know. My people. They will teach me a lot as I learn what they’ve all been up to since we last met and I’ll clumsily share what’s been going on here in Australia. That’s where you will find me.

(And you’ll also find me sitting down the back of science-y sessions looking confused. And wishing I was a mouse.)

easd2016_4c_180px

I’d already returned home to Melbourne on Friday morning when Dr Kevin Lee gave his talk on on healthcare social media. I wrote about his planning for the talk here after Kevin engaged OzDOC for some advice on important topics to cover. I’m really sorry I wasn’t there to hear his presentation, although felt there in spirit after I saw this! (Thanks, Ash!)


I reckon that this is the fourth or fifth year the ADS ADEA have spoken about social media and how healthcare professionals can use it safely. I remember seeing diabetes educator Natalie Wischer give a great talk back in 2012 highlighting the different social media platforms available and how they are being used in diabetes. This was just after we launched the weekly #OzDOC tweetchats and I stood up and gave a plug for our weekly online get-together, urging the HCPs in the room to have a look – to lurk – and see what we were so excited about.

I gave a talk the next year (that’s the photo Dr Kevin Lee used in his talk), encouraging HCPs to engage with the online community. And last year at the Roche Educators Day, I ran two practical workshops about how HCPs could use SoMe to connect, enhance and support diabetes care.

It has been on the agenda for a few years, and now it is time to stop talking about it and actually do it.

As mentioned last week, Symplur highlighted just who was talking online at the conference. As usual, the ACBRD team was doing a stellar job live tweeting sessions and promoting their excellent work. And, of course, advocates on the ground were doing their (our?) best to share and engage. There were over 2.7 million impressions on Twitter for the duration of the conference, which is certainly an increase from previous years.

I would really love the ADS and ADEA to be proactive about encouraging social media. I would love for them to look at what happened a couple of weeks ago at the American Association of Diabetes Educators conference and see how meaningful social media interaction between people with diabetes and healthcare professionals can and does happen. Safely. The real engagement and collaboration between the organising professional body and advocates saw impressions on Twitter of over 17.5 million, and over 860 people engaging online.

So, how do we go here in Australia about increasing online presence and discussion? In the room for Dr Kevin Lee’s talk were two of Australia’s most prolific and well-known patient advocates – both high-level users of HCSM. I’m referring to Kim Henshaw and Ashley Ng. I wasn’t in the room, yet was actively participating, re-tweeting and engaging – as were many others during sessions that I was sitting in earlier in the week. Having more consumers in sessions provides that connection with PWD not at the conference to hear and see what is going on.

I also think there was, perhaps, a missed opportunity at the session speaking about social media use. Having an advocate on the panel or chairing the session (and remember: Kim and Ashley were in the room!) would have added significant value to the discussion. Dr Kevin Lee went straight to the source when he was putting together his talk. Think about how great it could have been had one or two of those who helped him pull together his information were on the stage elaborating on their comments. Perhaps next year.

I’m back home after three days on the Gold Coast for part of this year’s Australia Diabetes Society – Australian Diabetes Educators Association conference. More to come next week, when I’ll try to pull together my very messy notes.

For today, here are some pictures!

 

As I took the stage to chair one of two sessions at the Roche Educators Day in Tuesday, I realised I had already been up for seven hours. It was only 11am. Sentences were difficult until my fourth coffee of the day kicked in!

 

On the job. Professor Steven Boyages’ talk: A connected ecosystem for healthcare professionals & their patients’ was full of practical tips about using technology to support people with diabetes.

 

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This was the moment I opened the new NDSS Diabetes and Emotional Health Handbook (for health professionals supporting people with diabetes) and I saw Diabetogenic on page 24! Thanks for capturing, Professor Jane Speight!

 

Proud moment!

 

Advocates running amok. We actually behaved ourselves quite well. Mostly.

 

Although, we were mighty busy! Three of the top four influencers at the conference happen to be consumer advocates, sharing information from the conference specifically with the intention of reaching other PWD who could not be in the room.

 

Martha Funnell used this in her talk on day one. Sums up many, many days!

 

Rather proud of this special young lass. Here’s Ashley presenting on her work focussing on the needs of young people with type 1 diabetes.

 

This is a combination of jet lag and exhaustion. (Jet lag belonged to Harriet.)

 

The NDSS stand looked very bright thanks to these beautiful resources from the Young People with Diabetes Program.

 

And another proud moment. Kim’s outstanding work on the national roll out of Mastering Diabetes means this resource is in the hands of those who need it most: children with type 1 diabetes, their families and schools. Well done, Kim! (And I’m holding Moving on Up which I am equally proud of!)

 

Spot the diabetes devices….

 

Gold Coast.

Proper wrap up coming next week. Enjoy your weekend. I know I certainly will! (But you can play catch up by checking out all the #ADSADEA2016 tweets.)

So many things on my radar at the moment. Here is just a taste!

Gila Monster and diabetes

Over the weekend, federal health minister, Sussan Ley announced the drug Bydureon would be listed on the PBS from 1 September 2016. Bydureon is a once-weekly injection used in conjunction with oral medications for people with type 2 diabetes.

Fun fact: Bydureon is the brand name for exenatide, which is a synthetic form of a substance found in the saliva of a lizard – the Gila Monster. (Please can we talk about how someone worked out that this would be a good treatment for diabetes?)

News from ACBRD

The team from the Australian Centre for Behavioural Research in Diabetes don’t sleep. At least, I am pretty sure they don’t. My office is on the same floor as them and I can tell you that I’ve never seen any of them asleep at their desk. Instead, they work really hard and produce things like these:

The latest about the MILES youth survey – the survey methods and characteristics – was published this week.

Centre Foundation Director, Professor Jane Speight, is straight talking at the best of times, and her commissioned article published on Monday in the Medical Journal of Australia pulls no punches in putting forward a strong case highlighting the need for behavioural innovation in the treatment of type 2 diabetes.

Dr Jessica Browne from the Centre has been leading work on diabetes and stigma, and this piece published recently in Diabetes Care is about the development of the Type 2 Diabetes Stigma Assessment Scale.

Over-achievers the lot of them. And how grateful I am! (If any of you are reading this, stop it now and get back to work!)

AADE / DSMA / diaTribe / Language

I cannot even begin to express how excited I was last week to see so much focus on and discussion about diabetes and language at last week’s American Association of Diabetes Educators conference.

I sat in my office in Melbourne last Friday morning in tears as on the other side of the world in San Diego (where it was Thursday evening) Cherise Shockley directed a tweet chat about language and diabetes. (And a huge thanks to Cherise for reaching out before the chat!)

In this piece from diaTribe, Kelly Close also wrote about language. Check out this BRILLIANT ‘Diabetes: Starting the Conversation’ infographic. I love this SO much!!

Rachel Soong Diabetes Infographic

Rachel Soong – Diabetes Infographic @DiaTriibeNews

 Molly’s blog

I am always on the lookout for diabetes blogs to read and share and this one is just brilliant! Molly Schreiber’s blog, And Then You’re at Jax, is about living with not only type 1 diabetes, but also rheumatoid arthritis. (Another one of us who collects autoimmune conditions…)

For beautiful, sensitive and honest writing, this is where it’s at! Check it out here.

ADS ADEA next week

Next week is the Australian Diabetes Society – Australian Diabetes Educators Association Annual Scientific Meeting on the Gold Coast. Program is live here.

I’ll be writing and tweeting from there for a couple of days next week. Keep an eye out on the #adsadea2016 hashtag to follow along!

New resources for young people from the NDSS

There is little more satisfying that seeing the end result of something that has taken a lot of effort, time and expertise. I am thrilled to show off these beautiful resources that have been produced out of the NDSS Young People with Diabetes Program that I manage as part of my day job.

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They look beautiful (the graphic designer is an absolute gem!) but even more importantly, they are full of important and useful information

An online version of Mastering Diabetes can be found here.

And an online version of Moving On Up can be found here.

More about the inclusiveness of the DOC…

My post about the DOC from earlier in the week has generated a lot of really interesting and valuable comment, both on this blog, on Twitter and Facebook and with many messages sent to me privately. Thanks to everyone who has contributed and, mostly, thanks to everyone for being so positive and respectful in their comments.

The purpose for writing was to try to encourage a discussion about how and why some people feel more included than others. I know this is not the first time this has come up and I doubt it will be the last.

I have noticed some common themes in how people feel and am trying to write something about that, but keep feeling clumsy and inarticulate. I’ll keep trying and see if I can make sense of anything – mostly in my head!

Banjos, banjos, banjos

Last week I went to two concerts at the stunning Melbourne Recital Centre. Both showcased banjo players and both were brilliant. One of the concerts was TWO banjo players and nothing more. I don’t know who I am anymore…

But I can’t stop listening to this at work.

And this.

The Melbourne Recital Centre stage ready for Punch Brothers.

The Melbourne Recital Centre stage ready for Punch Brothers.

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