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This year for World Diabetes Day, the International Diabetes Federation has decided on the theme ‘Diabetes Concerns Every Family’. According to the WDD website, the aim of the campaign is ‘…is to raise awareness of the impact that diabetes has on the family and to promote the role of the family in the management, care, prevention and education of the condition.’
I get that. I have said it on numerous occasions: it takes a village to live with diabetes.
I was a little nervous when I first saw some of the materials from the campaign, because I was worried that it may focus too much on the negative effects of diabetes and how it burdens the families of those living with diabetes. I know how diabetes impacts my family and I feel enormous responsibility already about that. I don’t need to be reminded of it, and I certainly don’t need to be guilted into being told that if I am not managing my diabetes properly I am doing a disservice to my family.
Although there have been a few little things that hint at those ideas, mostly, what I’ve seen has been positive and focused on celebrating and acknowledging those villagers who help us live with diabetes.
Diabetes Australia has decided on the campaign of #MyDiabetesFamily to highlight the idea of the village, and acknowledge that ‘family’ looks different to a lot of people. For some people with diabetes, it will be their immediate family – parents, partners, kids etc – who are their main cheer-squad and supporters; for others it will be their friends, work colleagues or maybe gym partner. Someone the other day told me that their dog is their most important diabetes supporter, providing them with comfort – and alerting them to lows.
I was asked to put together a collage of the people who I would refer to as #MyDiabetesFamily. This is it:
#MyDiabetesFamily
Obviously, and most importantly, Aaron and the kidlet feature. They know my diabetes in a way that no one else does because they see it most. They see the difficult days, the frustrations and how overwhelmed I can get, but they also see my celebrate the positives. And they have seen how much my diabetes – and my attitude to it – has changed in the last 12 months. In some ways, they benefit from Loop, too because my diabetes intrudes a lot less into our family’s life.
My parents and my sister are on there too – another obvious inclusion. Their support is never ending.
My gratitude for my family – in the more traditional sense of the word – is unending. They may not have diabetes, but they deal with it in different ways. While they may not understand that feeling of unquenchable thirst that comes from high glucose levels, or the panic of an ‘eat the kitchen’ low, they do know what it is like to be spectator to it all and I know that they all wish that I didn’t have to deal with those things – and everything else diabetes has to offer.
And the photo at the top shows just some of my friends with diabetes. As it turns out, this was the first photo on my phone with a group of diabetes friends, and these fab people are just a tiny number who also make up #MyDiabetesFamily; I am lucky to say that there are so, so many more.
These are the people whose islet cells are as absent as my own; these are the people who ‘get it’; these are the people who intrinsically understand what diabetes feels like – even if each of us have different experiences, and we use different words to explain it, and come from and with different perspectives. These are the ‘us’ in #NothingAboutUsWithoutUs; they are the ‘tribe’ in ‘Find your tribe, and love them hard’.
And in the middle? Well, that would be me. Because I am the one who is so grateful to have them all there as part of my life, helping and supporting me.
Want to get involved and celebrate your own diabetes family?
Have a look at the Diabetes Australia Facebook page (click on the image below to be taken there) to find out how.
DISCLOSURE (because they matter and I always disclose. ALWAYS.)
I work at Diabetes Australia, and had some involvement in the development of this campaign. I am writing about the campaign because I think it is a truly important one – not because I was asked to by any Diabetes Australia staff. Plus – I’ll take any opportunity to highlight the folks who make living with diabetes easier!
I’m still playing catch up on the goings on at EASD. It was such a busy conference – in general and for me personally – that my head is still lost in a lot of what happened and what I saw. It’s somewhat frustrating for me because diabetes conferences are seen as an opportunity for so many meetings of different groups and projects I’m involved in, and that means I don’t get to anywhere near the number of sessions I would like to. When I can, I make sure I live tweet my way through (that’s how I take notes to do write ups later), but this conference was so busy that there was very limited time for that.
But I still did get to see a lot thanks to the satellite events I was invited to and asked to speak at. Plus, this year at EASD, I was involved in something new that was super exciting.
DZD meets #DEDOC was a novel session combining young researchers and (not necessarily young) people with diabetes to give different perspectives on a variety of current research programs. The event was presented by Deutsches Zentrum für Diabetesforschung.
(My very limited German (i.e. I sang in St Matthew’s Passionat University – badly – and was in the orchestra for a German-language version of Threepenny Opera, or rather, Die Dreigroschenoper) is apparently good enough to translate that as the Diabetes Centre for Diabetes Research – so, I guess I’m almost bi-lingual now.)
Bastian Hauck hosted the event and was involved in the project to nominate PWD to speak at the event, and encourage other PWD who were at EASD to come along and listen. This was Bastian doing what he does best – facilitate discussion and encourage engagement by different stakeholders. He always manages to ask questions that get people thinking in different ways and did a stellar job again in this event.
The session was not designed as an excuse for PWD to be critical of the research and researchers, or to find fault in what they were doing. It was not to query the merits of the research either. It was to give the researchers an opportunity to speak about their work (in a rapid fire, five minute pitch), and for PWD to engage in that discussion, asking questions and explaining the relevance of the research to actually living with diabetes. While the project may not have actually come directly from PWD, it was a true collaboration where researchers spoke of what drives them, and we shared what we hope from science.
So, what research was on show?
Firstly, we had Dr Stefan Kabisch speaking about research which compared dietary prevention and treatment of type 2 diabetes with two different interventions: one low carb and one low fat. Cathy van de Mortelewas the PWD involved in this segment of the session, and we couldn’t help but have a little giggle that she had been selected. Those who know Cathy know she is anincredible baker and cook. Her creations are magical and if I lived in Belgium, I would be at her place for dinner three nights a week. But low carb and low fat? Not so much! However, she did give a really useful perspective on the need to remember that different eating plans need to be sustainable and what works for one person may not work for another.
Secondly, Dr Carolin Danielspoke about her research in type 1 diabetes prevention vaccines. Dr Katarina Braune stepped in as the PWD (she is also a researcher and endo) to give her comments on the research. It was interesting hearing Katarina, because she comes from the perspective of a scientist as well as a PWD, so her considerations were different to other PWD who spoke. Her questions and comments incorporated the scientific as much as the ‘real life’, and I loved the way she was able to so succinctly and eloquently translate it all so it made sense to someone like me without a scientific bone in my body!
And finally, Dr Julia Szendrödispoke about diabetes-related complications. While the research was specifically about the mechanisms in the development of complications, as well as looking at potential interventions, I was invited to be the PWD in this discussion to lend my language focus. I highlighted how conversations about diabetes-related complications need to be without judgement and stigma, and that at all times, remember that although a single body part may be in question when speaking about a specific complication, it is attached to a person with a whole body and mind that must also be considered.
To be honest, I felt that my comments were almost redundant because Julia did such a beautiful job in her five minute explanation of her work of ensuring that there was no blaming or shaming. I thanked her for this because the language in pretty much every other discussion of complications I had seen that week was not all that palatable!
I love the idea of including PWD to shape diabetes research. And I loved the discussion at EASD. It was an excellent example of how to include PWD in discussions – even highly scientific discussions. And just how easily it can be done!
This event was the first one, but hopefully the organisers have seen the value of conversation-based sessions including different stakeholders. It would be great for events such as this to attract even more attendees – researchers, HCPs and PWD – although a huge thanks to the German PWD contingent who was there, flying the advocate flag and supporting us – and to see them on the main program of the conference.
DISCLOSURE
I was invited to provide my perspective at the DZD meets #DEDOC presented by Deutsches Zentrum für Diabetesforschung. I did not receive any payment to speak at the session. Thanks to Bastian Hauck from DEDOC (the German Diabetes Online Community) for involving me!
Roche Diabetes Care (Global) covered my (economy) travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #EASD2018 and present at their media event the day before EASD. Roche Diabetes Care also assisted with providing me press registration to attend all areas of the EASD meeting.
#DOCDAY is now as much of the EASD program as other satellite events. While you may not see me limbering up at the start line of the EASD5K, you certainly will see me prepping for #DOCDAY!
The first #DOCDAY event was back in 2015 in Stockholm when diabetes advocate extraordinaire, Bastian Hauck, hired a small, overheated room in the back of a downtown café, with plans to house some diabetes bloggers and advocates who would be at EASD, providing us with the opportunity to share some of the things we have been up to in diabetes advocacy. The promise of coffee and cinnamon buns was more than enough to see the room fill to capacity before the event started.
My, how the event has grown! The following year in Munich, Bastian had the brilliant idea of moving #DOCDAY to the conference centre and inviting HCPs, researchers and industry to attend. The event was still very much an opportunity for PWD to share our work, but it made sense that we weren’t simply talking to each other. The echo chamber of diabetes can be vast sometimes!
Bastian has asked me to speak at each #DOCDAY event. I’m yet to work out whether it’s because he’s desperate for presenters, or if he just wants me up there so people can giggle at my odd accent and unintentional (yet frighteningly frequent) ‘Australian-isms’, that make sense to no one other than me and the very limited number of Aussie HCPs who are in the room. (Thank you to the couple of Aussie endos who came along this year and some other folks from the Diabetes Australia family!)
There was a very strong focus this year on DIY technologies. Dr Katarina Braune – fellow looper and paediatric endocrinologist – spoke about some incredible grass roots initiatives involving sharing information and expertise about DIY systems among the diabetes community in Germany. Katarina is a force to be reckoned with – dynamic, passionate, smart (so smart!) and committed to ensuring that people who want to come on board the DIY train are supported to do so.
Dr Shane O’Donnell, postdoc research fellow from University College Dublin, spoke about a new project called OPEN which is an international collaboration of PWD, HCPs, social and computer scientists and diabetes advocacy groups. (Disclosure: I’m involved in this work.) We’re hoping to investigate and establish an evidence-base around the impact of DIY systems on PWD and the broader healthcare world.
And I spoke about the recently released Diabetes Australia DIYAPS position statement.
It’s clear that this is a hot topic amongst some advocates. But the message remains clear – this is not about converting everyone onto a DIY system. It’s about ensuring those who chose that path are supported, a point I was at pains to hammer across:
(Click for original tweet)
The great thing about DOCDAY is that it is totally informal. There is no real agenda. Bastian likes to have a couple of people lined up to kick off proceedings, and say a few words, but the floor is open to anyone who has anything relevant to share.
Mandy Marquardt, Team Novo Nordisk cycling champ, spoke about her Olympic plans and how she’s clearly not letting type 1 diabetes standing in the way of achieving her dreams.
And Amin from MedAngel spoke about the importance of knowing that our insulin is being stored correctly, and about a poster presented at EASD which showed that a lot of the time, our fridges at home are not keeping insulin within the manufacturer-recommended temperature range, which means that insulin quality and potency may be compromised. More about that here.
(Also – great time for those of us down under to think about ordering a MedAngel as the weather starting to heat up. Do yourself a favour – and give yourself some peace of mind – by knowing your insulin is not being cooked or frozen. For Australians, order here.)
Some new initiatives I heard about this year include:
Diatravellers: a brilliant idea of using social platforms to connect travellers with diabetes to interact, share information and promote activities (such as events and peer group meetings). It’s early days yet, but keep an eye on their website as more information comes to hand.
The awesome Steffi from Pep Me Up (where you can buy very cool stickers for your Libre sensor, temporary tattoos and my choice of medic alert bracelets), is working with the community to develop a new code of ethics for diabetes bloggers. Another ‘watch this space’ idea which is just getting started.
And, Weronika Kowalska spoke about ConnecT1on Campaign, her new project for the European Patients Forum Program for Young Patient Advocates which will feature type 1 diabetes advocates connecting with people from all over the world. This is an awareness raising initiative and you can follow along on Instagram.
One of my main criticisms of EASD is that there is such limited ‘patient’ involvement in the actual scientific program, which is frustrating considering that there is a huge contingent of bloggers and advocates in attendance (thanks to Roche Diabetes Care organising for us to have access all areas media passes as part of our involvement in their #DiabetesMeetUp event). This is why #DOCDAY is so important. It gives us an opportunity to take the stage and talk about initiatives and issues important to people affected by diabetes. The HCPs and researchers who attend get to hear us and speak with us. It’s such a simple idea, but one that makes perfect sense!
It’s possible Bastian was translating something I had just said…
(Click for photo source.)
After a wonderful couple of weeks of real holidays – sun in Italy, less sun in London – I headed to Berlin, saying good bye to my family as we headed in different directions. I was bound for meetings before EASD officially kicked off. And they were headed to Wales and canal boats with extended family. We could not have found ourselves in more different settings!
My first day in Berlin was dedicated to HypoRESOLVE, the Innovative Medicines Initiative (IMI) funded project looking to provide a better understanding of hypoglycaemia. I am on the Patient Advisory Committee (PAC) for this project, which kicked off back in May this year in Copenhagen.
The project is divided into eight work packages (WP) and it was WP 8 that convened the first meeting. I was there as part of the PAC, and also to provide the personal perspective on hypoglycaemia.
Back in May at the kick off meeting, I had given a talk called ‘The literal lows of my diabetes’, where I spoke about my own experiences of 20 years of diabetes and how hypoglycaemia had impacted on my everyday life. This was a very personal talk, where I spoke about the fear and anxieties of lows, my different hypo personalities and the terror that comes with impaired hypo awareness.
But for this new talk, I wanted to do something different. I didn’t want to highlight my own experiences, because I am but one person and it is important that the audience never feel that they have ‘done diabetes’ and understand the ‘patient view’ because they have listened to one person.
I wanted my focus to be on the disconnect between how hypoglycaemia is regarded in the clinical and research world as compared with the real-living-with-diabetes world.
So, I used the tools at hand, and the fact that there is a vocal and ready to help diabetes online community just a few clicks away and sent out this tweet:
It was apparent straight away, as the responses came flooding in, that the way hypos are described and classified in clinical and research terms is very, very different to the way those of actually experiencing lows see them.
Here is how hypos are categorised in the literature:
Straight forward, neat, tidy, pigeon-holed.
And yet, when I asked PWD how they would describe hypos, here is what they came up with:
Some of the words were repeated multiple times, others appeared only once. Some of the words are the words I use to describe my own hypos, many I had not considered. Yet every single word made sense to me.
Hypoglycaemia, in the same way as diabetes, is not neat and tidy and it cannot be pigeon holed. I hope that my talk was able to illustrate that point.
And I hope I was able to highlight that using simple words and simple categorisations only service to limit and minimise just how significant and impactful hypoglycaemia truly is for those of us affected by diabetes.
You can keep an eye on the progress of HypoRESOLVE on Twitter, and via the website.
DISCLOSURE
The HypoRESOLVE project funded my travel from London to Berlin and provided me with one night’s accommodation. I am not receiving any payment for my involvement in the Patient Advisory Committee.
Previous disclosures about my attendance at EASD 2018, can be found on this post.
Click to be taken to Daisy Natives store.
I bought a new t-shirt the other day. I saw it on Instagram and decided that I just had to have it. I’m not sure if it was growing up in a mostly female household; or the six years I spent in an all-girls school; or perhaps it’s the friends I am fortunate enough to be around a lot; or maybe the fact that most of the people I work with are dynamic women; or raising a daughter in 2018. Whatever it is, girls supporting girls, and women supporting women is the approach I have always tried to take in both my personal and work lives.
I guess my thinking is that we need to look out for and support each other because we know that outcomes for girls and women around the world are not always that great. And also, when women build each other up, and support and encourage each other, we are unstoppable!
I was thinking about this last night as I followed a Twitter conversation that all started after a somewhat sensationalist article in a newspaper about a bloke (sportsperson?) who, as it turns out, seems to have some diabetes-related neuropathy. As people shared the article and spoke about it, there were a couple of comments from people with diabetes about this person – another person with diabetes – ‘not looking after himself properly’.
When I started reading, I almost pinched myself to make sure that I hadn’t been sucked into some sort of void, and been dragged back to another time. Because this conversation has happened before – countless times. (A search through Twitter and this post pointed me to just a couple of those times.)
Diabetes-related complications and stigma. Diabetes-related complications and language. They go hand in hand. And along for the ride is judgement.
The complexity between diabetes, and developing diabetes-related complications is far too much for my little brain to comprehend. But I do know that there are no guarantees in diabetes. And I know that blaming people for whatever path their diabetes travels is not helpful in any way.
When someone suggests that another person with diabetes is ‘not looking after themselves properly’ there is a lot packed into that. It may not be intended, but that comment is so loaded with blame and shame and judgement that it becomes agonisingly heavy and, quite frankly, terrible.
To suggest that someone’s diabetes-related complications are the result of them ‘not looking after themselves properly’ means that essentially what is being said is that the person intended for this to happen. That they ‘brought it on themselves’. That they deserve to now have to face a future of diabetes-related complications.
To that, I say bullshit!
And, somehow, it is even worse when a comment like that comes from another person with diabetes, because if anyone should understand how harmful judgement can be, surely it is others with diabetes.
Supporting each other doesn’t mean just patting each other on the back and saying ‘good job.’ It is far more than that. It is acknowledging that we are doing the best we can at that moment time with what we have. It’s accepting that there are myriad ways of managing diabetes, and that people should have the right and the ability to choose the way that is right for them – even if we don’t think it is right for us. It is encouraging others’ efforts, cheering their successes and standing alongside them when things are tough. It is being happy for other PWD when they are doing, or being invited to do, great things.
It is not saying ‘You are not doing enough’.
We would be quick to say that it’s not okay for a healthcare professional to suggest that we are not trying hard enough. We don’t accept it when the media make claims that people aren’t looking after ourselves properly. We push back and say it is not okay when those without diabetes suggest that we are not doing our very best.
And in exactly the same way, it is not okay for other PWD to criticise one of our own because, honestly, we should know better. We should be on the same side. We should be building each other up.
It is completely unreasonable to expect that people with diabetes are going to agree on everything, and actually, who would want that anyway? Diversity of opinions is as important as diversity of experience. We all have our own ideas and ways to live with diabetes and there will be times that we completely disagree. That is all fine, as long as it is done with respect.
But even with those differences – differences that we can celebrate – the commonality of messed up beta cells should be what brings us together to be on the same side.
I could be Pollyanna-ish about it all and say that we should just be kind to each other, and that may be a good place to start.
Living with diabetes is fucking hard. We never, ever get a break from it. No matter how manageable our diabetes seems or how cruisy things may be at a particular moment, it is still always there. It doesn’t matter if we are scaling mountains or running marathons. Or living our dreams or travelling the world. Or getting up in the morning and going to work or school. Diabetes does not take a break.
Diabetes doesn’t take a break. But we can give each other one. No blame. No shame. Just an acknowledgement that we are doing the best we can. PWD support PWD. That’s what makes us stronger. That what makes US unstoppable!
P.S. If you really don’t agree with what someone is doing with their diabetes, you can say nothing at all. You don’t have to be critical.
The day before the Australasian Diabetes Congress (ADC) started, Ascensia Diabetes Care brought together a number of Australian diabetes blogger and advocates for the Australian Diabetes Social Media Summit, #OzDSMS – an event that promised to tackle some interesting and difficult topics in diabetes. The social media component was relevant for a number of reasons: the #TalkAboutComplications initiative that The Grumpy Pumper would be speaking about had been (and continues to be) driven on social media; and we really wanted to share as much as we could from the day on different social media platforms to ensure that those not in the room had a clear picture of what was going on and were able to join the conversation.
This planning for the event happened after one of those brainstorming meetings of minds and chance that sometimes occur at diabetes conference. I caught up with Joe Delahunty, Global Head of Communications at Ascensia at ADA because he wanted to speak with me about the launch of their Contour Next One blood glucose meter into the Australian market. And from there, plans for the social media summit were hatched. Joe isn’t afraid to look outside the box when considering ways to work with PWD, and his idea of a blogger event tied in beautifully with the ADC which would already have a number of diabetes advocates in attendance. We both knew that we needed a drawcard speaker. So he sent us Grumps.
One thing was clear from the beginning of the event’s planning – we wanted this event to tackle some issues that aren’t always readily and keenly discussed at diabetes gatherings. It is often a frustration of mine when following along industry-funded advocate events that the topics can seem a little frivolous, and there is the risk that they can seem a little junket-like because most of what is being shared is selfies from the attendees in exotic locations. (For the record, I am always really proud of the Aussie DX events hosted by Abbott because the programs don’t appear as though we’ve been brought together to do nothing more than celebrate our lack of beta cell function while swanning around Australian capital cities.)
The #OzDSMS program was simple – three talks plus a product plug. The discussion was going to be led and directed by the PWD in the room, but the Ascensia team wanted to be part of that discussion, rather than just sitting and listening.
Grumps led the first session in a discussion about how the whole #TalkAboutComplications thing came about after being diagnosed with a foot ulcer. Although he had prepared a talk and slides, the conversation did keep heading off on very convoluted tangents as people shared their experiences and asked a lot of questions.
For the second session, Grumps and I drove a discussion focused on decision making and choice when it comes to diabetes technologies, with a strong theme running through that while the people in the room may know (and perhaps even use) the latest and greatest in tech, most people using insulin are still using MDI and BG monitoring as their diabetes tech. (For some perspective: in Australia, there are 120,000 people with type 1 diabetes and about 300,000 insulin-requiring people with type 2 diabetes. Only about 23,000 people use insulin pumps as their insulin delivery method. And there would not be anywhere near that number using CGM.)
This certainly is interesting when we consider that most online discussions about diabetes technology are about the latest devices available. We tried to nut out how to make the discussion about the most commonly-used technologies relevant – and prominent too.
Also in this session was a conversation about back up plans. While this is one of Grumps’ pet topics (he wrote about it in one of his #WWGD posts here), I think he met his match in David Burren, our own Bionic Wookiee. Between the two of them, they have back up plans on top of back up plans on top of back up plans, and over the week came to the rescue of a number of us at ADC who clearly are not as paranoid well organised as them.
Yes, there was talk of product. Ascensia’s Contour Next One meter was being launched at ADC, so there were freebies for all and a short presentation about the meter. (For a super detailed review of the new meter and the app that accompanies it, here’s Bionic Wookiee’s take.)
It makes sense that device companies use these sorts of events as an opportunity to spruik product, especially if it’s a new product. I am not naïve enough to ever forget that we’re dealing with the big business of medical tech, shareholders, ROI and a bottom line. But as I have said before, I WANT us to be part of their marketing machine, because the alternative is that we’re not included in the discussion. I’ve not drunk the Kool Aid – I’m fully aware they know that we will have some reach if we write about their product. I’m also fully aware that even though our bias should always be considered, the words remain our own.
I was super pleased that during the small part of the day dedicated to talking about the device, the presentation wasn’t simply about trying to blind us with all the fancy bells and whistles included in the meter. Instead, the focus was on accuracy. As I wrote here, accuracy will always be king to me, because I am dosing a potentially lethal drug based on the numbers this little device shows me. (Well, these days, I need it for when I calibrate my CGM which will then inform Loop to dose that potentially lethal drug.) Accuracy matters. Always and it should be the first thing we are told about when it comes to any diabetes device.
We moved to the Adelaide Oval for dinner for a final presentation by CDE and fellow PWD, Cheryl Steele, who also spoke about accuracy and why it is critical (this went beyond just talking about the new meter). I walked away considering my lax attitude to CGM calibration…not that I’ve necessarily made any changes to that attitude yet.
It was an exhausting day, but a very satisfying one. There was a lot of chatter – both on- and offline and it felt that this was just the start of something. Ascensia has not run an event like this before and hopefully the lively discussions and engagement encourages them to see the merit in bringing together people with diabetes for frank and open dialogue about some not-so-easy topics. While this event was exclusively for adults with type 1 diabetes, I think people with type 2 diabetes, and other stakeholders such as parents of kids with diabetes, would benefit from coming together to share their particular experiences and thoughts in a similar event setting, and potentially some events which bring different groups together to hear others’ perspectives.
As ever, I felt that this event (and others like it) go a long way towards boosting opportunities between PWD and industry, and I am a firm believer that this is where we need to be positioned. Thanks to Ascensia for allowing that to happen; thanks to others from far and wide who joined in the conversation – we were listening. And mostly, thanks to all the advocates in the room for contributing so meaningfully.
Disclosures
I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!
Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.
My travel and accommodation to ADC was funded as part of my role at Diabetes Australia. I would like to thank the ADS and ADEA for providing me with a media pass to attend the Congress.
Just over half way through the Australasian Diabetes Congress and after a massive few days, I’ve lost my voice, my way and, my ability to form coherent thoughts. Thank goodness for links and stuff.
Grumps Down Under
Before the Austalasian Diabetes Congress (ADC) even kicked off, our skies darkened, a final Winter cold-blast hit the east coast of Australia and The Grumpy Pumper arrived. Oh, and Melbourne lost our World’s Most Liveable City crown the day Grumps arrived in my hometown. I’m not necessarily saying these things are connected, but that’s a lot of coincidences…
Anyway, Grumps and I spent the next few days drinking Melbourne coffee and tackling the issue of language and diabetes, and Grumps spoke about his #TalkAboutComplications work. The ACBRD team has written about his visit last week here.
Coffee. Because: coffee.
Once Melbourne had enough of Grumps, we headed to Sydney to do more work, including visiting the offices of Life for a Child and catching up with some of the team there.
#OZDSMS
After arriving in Adelaide, it was straight to the conference centre for the first gathering of Aussie diabetes advocates and bloggers for Ascensia Diabetes Care’s Social Media Summit.
Grumps was the special guest and as well as speaking about diabetes complications, he and I led a discussion about decision making in diabetes technology.
You can see what all the chatter was about by checking out the #OzDSMS tag on Twitter, (there was a lot of discussion!), and I’ll be writing more about it in coming days.
Hard at it!
DIYAPS at ADC
The next day, ADC kicked off with a symposium on the Brave New World of Diabetes Technology. Three early Aussie loopers – Cheryl Steele, David Burren and me – took to the stage and you can watch all our talks here:
New DIY Diabetes Technologies Position Statement at ADC
And if you make it all the way to the end (the symposium went for 2 hours all up), you’ll see Diabetes Australia CEO, Greg Johnson, launching Diabetes Australia’s new position statement about Do It Yourself Diabetes Technologies. I am so proud of this world first position statement, something that all diabetes stakeholders from all over the globe have been crying out for. (A reminder to anyone asking ‘Why don’t we have one of those?’: please don’t reinvent the rule. Adapt and use this for your jurisdiction and get it out there to start the conversation.
(Click link to go to position statement)
PWD on stage at ADC
Later in the day, the stage in Riverview 7, I was pleased to stand on a stage crowded with some wonderful diabetes advocates for an ADC first – a symposium on Co-design. More about this another time, but some familiar Aussie advocates shared their work which has really advanced the role of people with diabetes in the development and delivery of diabetes services, activities and resources. I was so pleased to be able to show the new Mytonomy ‘Changing the Conversation’ video as an excellent example of co-design.
Melinda Seed and Frank Sita at the co-design symposium
Sexy new pump hits Australia
And rounding out day one was the official launch of the Tandem t:slim pump which is making its way to our shores next month. This is a sexy, sexy little pump and I know there are going to be a lot of people very excited about it! (The pump is being distributed by AMSL Diabetes in Australia, so keep an eye on their website for more details.)
PWD at ADC
Pleasingly, there has been a presence of people with diabetes at ADC. Probably this is most visible when reading social media updates from the #DAPeoplesVoices. David Burren, Melinda Seed and Frank Sita have been invited by Diabetes Australia to provide updates and commentary of the Congress. They are tweeting machines and have been covering sessions, live-tweeting throughout. But that’s not all! Ashley Ng facilitated a Twitter workshop, encouraging HCPs at the event to get on Twitter and share what they were learning. Kim Henshaw is here from Diabetes Victoria; Tanya Ilkew from Diabetes Australia is also here. Grumps is here. And I’ve been doing what I can in between presenting and meetings.
I crashed last night with my voice gone, and fell asleep wrapped in the memory of a brilliant few days of impactful and meaningful advocacy efforts. There’s so much more to do. But these sorts of events, and opportunities to spend time with other people with diabetes who are certainly on the same wavelength and have the same commitment to bringing in the voice of PWD to all discussions, certainly help to advance our cause.
And one more thing
It looks like it’s that time again, Australia…
Disclosures
I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!
Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.
It seems that every now and then there is a splattering of blog posts about people’s involvement in the DOC (this by Frank at Type 1 Writes just yesterday is a lovely example) and how the community operates. Mel Seed at Twice Diabetes shared her thoughts on community here, and I recently this about outrage from within the DOC.
Communities ebb and flow. For some people, there may be times that the community feels more welcoming and supportive than at other times. Sometimes we need our community more, sometimes we need it less. And sometimes…sometimes we step away because we realise that the community – or at least the way we have been using it…is no longer what we need at that moment, and we reevaluate how we intend to engage (or not).
But these discussions are not new. It seems they happen in fits and spurts. A couple of years ago, it seemed to be one of those bursts of activity, and at that time I wrote this…
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I’ve been interested to read a few things lately on Twitter about the DOC not being a particularly welcoming environment. I am both saddened and surprised to hear that some feel that way, because I have always found the community to be very, very supportive and welcoming. Perhaps I am fortunate, or perhaps I have just found – and engage with – people who are friendly and happy to embrace new people in the community.
I’m unsure if feeling unwelcome is because there is a sense that the community may be a little like a high school clique. There are people who have known each other many years in this space, so they have a comfortable and easy banter as they share stories and inside jokes. I know that when I started, I was worried about that, but anytime I tried to engage, I found nothing other than friendly responses.
When I first walked into the DOC playground a few years ago now, I was considering starting a blog after years of reading what others were saying about their lives with diabetes. I’d lurked around a few online platforms to see how people interacted and what people said.
Then, one day, I decided I would join a tweet chat, and I tentatively said ‘hello’ to the #DSMA world. The rest is history and now I am a regular contributor and participant – both online and off – in the community.
But it did take me a while to understand the lay of the land and to get a handle on online communication. Trying to adequately put across a point in 140 characters or fewer leaves little room for qualifying comments, so often it’s only the bare bones that can be offered. This can sometimes leave people feeling a little taken aback at the directness of discussions.
I am, by nature, very direct. I take the ‘tell-me-what-I-need-to-know-and-leave-it-at-that’ approach, so Twitter is a perfect platform for me. Say what I want and get out! But I know that sometimes, I come across as being very direct; some may even say confrontational. People who meet me after having only engaged on Twitter say they are surprised that I am a lot warmer in real life that online. (I never know whether to apologise or say thanks to that…)
I had to learn that just because people had differing opinions didn’t mean that they were attacking me, or that I wasn’t welcome in the discussion. In fact, some of the people I respect most in this community are people who I don’t usually agree with. They challenge me to think about things differently and to step out of my comfort zone. I’ve engaged in some really robust and heated discussions about different aspects of diabetes. As long as it is done with respect, (and an understanding that an opposing opinion isn’t a character flaw!), I’m happy to not agree.
And, possibly most importantly, I learnt that I didn’t need to love everyone in the community. I’ve written about that before, and how it came as a huge relief when I realised that I wasn’t going to be friends with everyone; there would be some people I just didn’t really feel any connection to – just as there are many who don’t gel with me.
The DOC is a big community; there are many of us. And when there is a community, there will always be people who are more vocal and more active. But they are not the only people in the community. It really does come down to finding people where there is some sort of synergy, or some way to connect. Just like in real life!
So what’s the take away from this? I hate for people to feel that they can’t be part of the community because they have a different view to others. I have not come across another person in the DOC who I agree with all the time. But equally, I’ve not ever had someone attack me for having a different opinion to them. (Trolls excluded in that last comment, because trolling is attacking and just not necessary.)
I guess the struggle is that when you have a lot of very passionate people given a microphone and a stage, we get very, very worked up at times and defend our position fervently, challenging those who don’t agree, building alliances with those who do. We can be a vocal bunch, we like to be heard and listened to, and we want to defend, defend, defend what we say. I am guilty – if that is the right word – of being and doing all these things.
But I genuinely do want to hear from everyone. I don’t have to agree, or even like, what you are saying, but I want to hear it. Any community is stronger with diversity of opinion, experience and outlook. And the community is weaker when people do not feel that they are free to share their thoughts.
I have a very scientific way of collecting info to share in these Internet Jumbles. I make weird notes on my phone that absolutely make sense when I note them down, and then make absolutely no sense when I revisit them to put together the latest edition. (Case in point: ‘DMK mine’ had me stumped for a few hours until I realised that was shorthand for the HypoRESOLVE piece on Diabetes Mine. The DMK is because the meeting was in Copenhagen. Of course it makes sense. Perfect sense.)
Half the time, even after trying to work it out, I still can’t understand my notes, so there is a shedload of stuff I wanted to share that is still a mystery trapped in my iPhone.
But! Here are the ones I was able to decipher. Buckle up…it’s a long one.
Ask patients? That’s novel
Results of a review of international literature examining patient involvement in the design of healthcare services showed that patient engagement can inform education (peer and HCP) and policies and improve delivery and governance.
I am always interested to read these sorts of articles, but must say, my response is often an eye roll and the words ‘No shit, Sherlock’ muttered under my breath.
Research and people with health conditions
What is the role of people with health conditions when it comes to research? This editorial from BMJ suggests that full partnership is the best way.
And this infographic from Public Health Research and Practice about how to involve consumers in health research is also useful.
Thanks for listening
It’s so nice when people actually take home some tips and tricks from presentations I’ve been involved in. This tweet over the weekend from diabetes educator Belinda Moore (referring to a symposium at last year’s ADS ADEA meeting in Perth in which I was fortunate enough to be involved) was gratifying.
Peer support remains an absolute cornerstone of how I manage my diabetes as effectively as I possibly can. It is those others walking the same road who help me make sense of a health condition which takes delight in confusing the hell out of me!
The driver’s seat
This post from Melinda Seed underlines why she believes that the idea of diabetes being a ‘team sport’ is not especially accurate.
Complications and language
The awesome PLAID Journal (which you really should bookmark and read) published a piece just as ADA kicked off about why we need to change the way we speak about diabetes complications.
The piece was written by me and Chris Aldred (AKA The Grumpy Pumper), bringing together Grumps’ #TalkAboutComplications initiative and my constant banging on about language. (I first wrote about needing to reframe the way we talk about complications five years ago in this piece. Every word still holds true.)
You can reads the PLAID Journal piece here. And please share. This is a message that we need to get out.
Wellness is not the same as medicine
My huge crush on OB/GYN Dr Jen Gunter only increased after she published this piece in the NY Times last week.
I have written before about how damaging the ‘wellness industry’ can be in diabetes, including this piece on the language of wellness.
Diabetes Voice reboot
The IDF’s magazine has had a reboot and is not delivered in a digital format. Check it out here.
Well, that’s candid…
This photo of Cherise and me snapped at Diabetes Mine’s DData Exchange is hilarious in itself, but Amy Tenderich’s caption is gold!
(Click for source)
Right device, right person, right time
Dr Kath Barnard’s piece in Diabetes Medicine Matters reiterates her message from the 2017 ATTD meeting (I wrote about it here) about the importance of matching the right device at the right time for the right person.
What are the barriers to preconception care ?
This piece was just published in Diabetes Research and Clinical Practice looking at the reason women with diabetes may or may not attend pre-pregnancy care. (I was a co-author on this piece.)
‘If only there was a….online community for people with diabetes’
That comment came from a HCP at a diabetes conference a few years ago – just after someone (maybe me? I can’t remember…?) had literally just given a talk about the diabetes online community.
The DOC is not new – it’s been around for some time – and this great piece from Kerri Sparling gives a history of the DOC.
HypoRESOLVE on Diabetes mine
I was interviewed by Dan Fleshler from Diabetes Mine about HypoRESOLVE. You can read his piece here – it gives a great overview of the project.
On a break
I’m going to be taking a little Diabetogenic break for the next couple of weeks. The rest of the year is shaping up to be super busy, so I thought I’d use the next fortnight to get myself organised.
I’ll be sharing some old posts from the Diabetogenic archives and expect to be back just in time for the Australasian Diabetes Congress which kicks off in Adelaide on 22 August.
In the meantime, be well and be kind to yourself.
Diabetogenic 