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I’m back on deck at work today after a whirlwind ten days in Europe for meetings and a conference. I started in Amsterdam, then flew to Florence and finally flew to Copenhagen (via Pisa). Those ten days were busy, long and interesting. And, perhaps best of all, packed full of others from the diabetes community.

Spending time with others living with or around diabetes is restorative. I know I get jaded at times, and burnout – in all its forms – takes its toll. I’ve been feeling a little advocacy burnout lately, and that has the tendency to make me feel that I need to step away from diabetes for a bit. Plus, I wasn’t sure if I could be bothered with the inevitable onslaught that comes when these sorts of activities happen.

Instead of hiding away (which is what I half wanted to do), I got on a crowded plane to Europe to spend almost two weeks ‘doing’ diabetes advocacy in different forms. By the time I got to Nijmegen – an hour and a half out of Amsterdam – for HypoRESOLVE I was already feeling better. I felt the darkness of burnout slip away as I sat in meetings, speaking up and providing PWD input into the project. And there, alongside me, were others living with diabetes. We leaned into each other, stepped back so another could take their turn, and supported each other to feel comfortable and relaxed. We reminded each other that there was a reason we were there – because people with diabetes must have a seat at the table and that we must be heard. We lived, breathed and ate ‘Nothing about us without us’ throughout that meeting and by the time I boarded a hideously early flight to Florence for the next meeting, I was raring to go – further boosted by a diabetes in the wild encounter.

Two days of meeting in Florence with friends and peers from the diabetes community talking about our experiences in the diabetes community continued to see my mojo return. We spoke about difficult topics, how the community works best and the place everyone has in there. I was reminded that the community ebbs and flows, and that it is not static. Sometimes, that rut that I find myself in means I forget that all communities change and grow and develop. This is actually a positive, because as it shifts, more people come in, some people step away (for good or just a bit), we reconfigure how it fits us, and diabetes makes sense in new ways.

Some much needed downtime meant that I could reconnect with peers and feel myself being completely and utterly filled up in a way that only comes when surrounded by people who get diabetes and this weird diabetes space. We don’t all have diabetes – we represent different corners of the community, but we know diabetes in a way that is particular to those who live close to or with it. Our dinner after the second day of the meeting saw us finally able to breathe and take some time out of diabetes speak, and instead revert to a steady flow of laughs (shrieks, actually).

The next day, a friend from Italy just happened to be in Florence. We met up and I met her family, including her son who has diabetes. As we drank coffee just over the Ponte Vecchio, diabetes was spoken about a bit, but mostly, I got to learn about this young man who is clearly going to take on the world. He is smart, funny, delightful and inquisitive. His questions about Loop were intelligent – far more so than anything I would have thought to ask before I started using the tech! I hugged his mum as we said good bye, noting that she had just introduced someone else to our tribe.

By the time I arrived in Copenhagen (at 2.30am thanks to high winds in Florence, a bus ride to Pisa to take a diverted flight and some first-rate Italian disorganisation), I was exhausted, but at the same time felt more enthusiastic about the diabetes space than I had in some time. The next morning when I arrived at the conference venue, I was ready for a packed day of speakers, and to do my own presentation in the afternoon. I looked around and saw that there were a number of people living with and around diabetes that I knew, as well as a whole lot of new faces in there. The event was for HCPs, but as always, those of us with a truly personal connection to diabetes searched each other out. I met members of a support group known as ‘Diabetes Dads’ who meet regularly to speak about their kids with diabetes. They were there to support their friend who was speaking about his Looping son.

At lunch, I sat at a table with two PWD I knew. Two other people joined us and we quickly found out they too have type 1 diabetes. The conversation flowed – we understood each other, and our shorthand of diabetes speak easily fitted into our stories. We nodded as we heard stories that sounded familiar, even though they were being told by someone from another country who, until we sat down with our overflowing lunch plates, we had never met before. One of the women at the table had asked during an earlier session about how to wear the devices required for Loop, and I pulled out my RileyLink and showed it to her. She held it and weighed it in her hands. She’d wanted to know how to wear it with a fitted dress and I was able to show just how easily I could tuck away everything, even with the straight dress I was wearing for the day.

We may have all been there because of an interest or curiosity in DIY diabetes, but there is far more than that to draw us together. Just like as at the earlier meetings. As always, diabetes brings us together, but it’s far more that keeps us that way.

By the time I boarded the Dreamliner at Heathrow, all traces of burnout, and questions about how to manage in the sometimes tricky maze of diabetes community had completely subsided and were replaced with the reminder that when we find out tribe and surround ourselves with them, the burnout is replaced by feeling supported. And that’s how and why we show up. We do what we do, we show up, we speak up and we try to get stuff done. Ten days of that and I feel so much better. Which is good. Because as it turns out, those ten days are just the start …

DISCLOSURES

My flights to Amsterdam and accommodation while in the Netherlands was covered by HypoRESOLVE. I am on the Patient Advisory Committee for this project. My flight to Florence and two nights’ accommodation were covered by Lilly. I was in Florence for a DOCLab Advisory Meeting. My accommodation in, and flight home from Copenhagen was covered by the Danish Diabetes Academy. The Academy invited me to speak at their Diabetes DIY Movement conference.

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On Saturday I was invited by Diabetes Victoria to be part of the diabetes technology panel session at their Diabetes Expo. (Disclosures at the end of this post.)

The session was on the program as being about ‘The ins and outs of diabetes technology’ and promised to offer perspectives from people with type 1 and 2 diabetes, a researcher, endocrinologist and CDE.

The panel involved two of my favourite endocrinologists – Professor Peter Colman and Professor David O’Neil. I have known both for a number of years and they are, without a doubt, absolute giants in the diabetes clinical and research world. I love that they accept and acknowledge there are limitations to current tech and are not afraid of DIY solutions. Even more, I love how they are very respectful of the expertise of PWD and understand that choice is essential. How wonderful to be on a panel with HCPs who regularly deferred to the PWD sitting alongside them to answer questions and further the discussion.

The session got off to a slightly rocky start as we diverted a little from the designated topic, but we got back on track eventually with the panellists being able to share their experiences and views about just where we are with diabetes tech in 2019, how it can help people living with diabetes, the frustrations tech can lead to and what we hope for the future.

I enjoyed the question about whether tech makes life easier for PWD. I honestly believe this is a double-edged sword – technology is designed to make our lives easier and that’s what it promises to do on the box, but the reality can be very different.

This is something I speak about when explaining my love/hate relationship with tech. Getting things right so that I don’t want to tear devices from my body and throw them out the window takes time. My first encounter with CGM was shocking and I swore to never use it again. The first sensor insertion caused so much blood that the Medtronic rep helping to teach me how it all worked actually gasped and then claimed never to have seen anything ‘so scary’ before. That was not reassuring. The words scary and gory weren’t on the box.

Then there was the data overload, unstoppable alarms and inaccuracy. How was this device meant to revolutionise my diabetes treatment (thatwas promised on the box!) if it was inaccurate, caused me to bleed everywhere and caused me so much frustration and distress that I never wanted to see, let alone use, CGM as part of my diabetes management. Ever. (Fast forward a number of years and thank god that’s not the case anymore!)

There was a lot of talk on the panel about how far we’d come and how lucky we are to be living with diabetes in 2019 rather than in 1959 or 1969 or anytime other than now. We were reminded of glass syringes that needed boiling and needles that needed sharpening. And days before home glucose monitoring, back-pack sized insulin pumps and the good old days where things were really not so good. Just old.

I won’t for a moment deny that we have come leaps and bounds since those days. In the twenty-one years I’ve lived with diabetes there have been lots of tech changes and improvements.

We were asked by the panel moderator how we feel about tech in 2019 and the answer from other panellists was that they feel hopeful and appreciative. The CDE on the panel has lived with type 1 diabetes for thirty-seven years and obviously has seen a lot of changes in that time. The two endos on the panel said that they feel that there have been huge strides made in tech – rapid and very significant in recent years.

When it got to me, I acknowledged what the other speakers had said. ‘I am really pleased to be living with diabetes in 2019,’ I said. ‘I use tech and I generally do love that it is available to me to use, despite the frustrations.’ I paused and looked around the auditorium. I had more to say and I had a split second to decide whether I just left it there, saying what I felt people expected me to say. Or I speak the truth – my truth.

I lifted the microphone to my mouth. ‘But actually, I’m angry,’ I looked around again, settling my gaze on the group of people in the room I knew. ‘I’m angry because we are where we are, and PWD are being given a rough deal.

‘Technology should be easy and accessible and affordable for everyone and it is not. I use a DIY system that means that I am the least burdened by diabetes than I have ever felt. But to get this system, I had to build it myself. It is unregulated, it is experimental. And people like me, doing what we do are largely met with scepticism and suspicion from HCPs who don’t understand the technology. We are accused of not taking our safety seriously – often through passive aggressive comments from not only HCPs but also device companies about the only safe devices being those that have been through RCTs and regulatory bodies. When we talk skin in the game, those of us who have these devices actually attached to our skin have the most at stake, so suggesting we don’t care about safety is ridiculous.’

I paused long enough only to take a breath.

‘The technology is available to do what I am doing, but it takes so long for device companies to get new things to market and through regulators, and even then we are stuck with set targets and limited customisation. We are languishing with older, nowhere near as useful tech. We are expected to accept that and just deal with it and be grateful for it. THAT is why there is a hashtag and a movement called #WeAreNotWaiting. That is why am not waiting. And it’s why I’m a little angry.’

I don’t know everyone who was at the tech panel session on Saturday, but there was a group that I did know. They were the ones who applauded after my little rant.  When they hear a group of panellists claiming that we are fortunate because the current available tech is so much better than what was available 70 years ago, they shrug their shoulders and know that there is more. They are the ones who have started down the DIY road or the Afrezza road (as one audience member explained).

We should not feel that we have to be appreciative, or that what is offered is the best there is. I am so, so glad that there are people out there who have not been prepared to just accept what was on offer, and instead go out there and make better tools – make the current tech better. They were not satisfied, and their smarts and determination has meant that many more of us don’t have to settle for the vastly imperfect tools available. Sure, DIY solutions aren’t perfect either, but they are certainly better.

I’m not really sure how my comment was taken by the broader audience. I suspect that a lot of them weren’t too sure how to take the woman waving her hands about, even after I promised them that I’m really not angry all that much and that I am actually quite delightful (not sure I fooled anyone on that point).

Probably the message that resonated most throughout the panel discussion was that choice is important and that there is no one size fits all solution to diabetes technology. That is definitely true. But that extends to there being no one size fits all to how we feel about the overall tech landscape. And the way I feel is that I am not willing to accept the status quo.

DISCLOSURES

I worked at Diabetes Victoria from September 2001 until January 2016. I was not involved in the planning of the 2019 Expo. I did not receive payment to speak at the Expo.

We all do a good job at undermining ourselves at times. We use a four letter word that diminishes what we are doing, and limits the value of our experience and expertise. That four letter word is ‘just’.

In diabetes, we hear it all the time: ‘Oh, I just have type 2 diabetes’ as though it is insignificant and doesn’t have any challenges. ‘I’ve lived with diabetes for just a couple of years’ because we think there is only currency in decades of living with the condition, when really any length of time with diabetes is meaningful.

And we are all about minimising our experience when it comes to the treatment of our diabetes. ‘just use diet and exercise to manage my type 2 diabetes’ or ‘I’m just on tablets’ or ‘I’m just on injections twice a day’ or ‘I’m just on MDI’. The list goes on and on. And on.

I realised just how ridiculous we have become with this when I heard myself, during a conversation with a fellow Looper, ‘Oh, I just use Loop’. (More on that later…)

At the Ascensia Social Media Summit at ATTD we spoke about this, specifically how there is almost a stigma within the diabetes for those seen to not be using the shiniest and brightest and newest of technologies. It seems that some people almost feel embarrassed if they are not constantly updating their technology toolkit with the most recently launched product.

The idea that anything that we are using today is ‘yesterday’s technology’ is wrong. Blood glucose monitoring can’t be ‘yesterday’s tech’ if it is what most people are using to track their glucose. And syringes and pens can’t be considered the ‘old way to deliver insulin’ when that is how the vast, vast majority of inulin-requiring people with diabetes get insulin into their bodies. Plus, every single one of us using a pump must be able to deliver insulin this way because machines break.

Somewhere in discussions about our treatment technologies, we seem to have forgotten that, actually, not everyone wants to be using the latest kit. And that is okay. There is a spectrum of diabetes technology, and as long as we are on it somewhere and managing our diabetes the way that works best for us, then elephant stamps all around!

There is clearly an over-representation of people at one end of that spectrum dominating on and off line conversations. Spend a couple of hours in a diabetes Facebook group and it would be a reasonable assumption that most people are wearing pumps and CGM. But that’s not true.

And it could appear that DIYAPS is the way to go for most people with T1D, when the fact is that numbers are relatively low. It’s hard to estimate exactly, but there may be somewhere between 2,000 and 3,000 worldwide how have ‘built their own pancreas’. That is just a drop in the type 1 diabetes ocean.

It’s fantastic for those of us interested in this technology to be able to (virtually) congregate and talk amongst ourselves. I learn so much from my peers in these groups – just as I have with all aspects of life with diabetes. The lived experience continues to trump any other way of learning about diabetes.

Of course, that doesn’t mean that we shouldn’t be talking about technology used by limited numbers. Of course we should. We want others to know about it so they can make an informed choice about whether it may be right for them.  We want our HCPs to know about it and to support those of us using all sorts of technologies and treatments.

Where it becomes problematic is when there is the misconception that this is the norm. Or when those not using the newest technology feel that they are wilfully doing diabetes the ‘old way’. It’s unfair to think for a moment that those who are not using the tech ‘don’t care’ enough about themselves – especially when decisions are made based on a very good understanding of what is available and what they have decided works best for them.

So, back to my ‘Oh, I just use Loop’ comment. It was directed to someone far more technologically advanced than me; someone who runs all sorts of other programs alongside their DIYAPS. They generate lots of reports and make lots of changes and seem to have far more bells and whistles than I even knew were available.

I nodded as they told me all they were doing and then, when they asked me how I manage my diabetes, I answered that I just use Loop. I heard myself saying it and stopped and corrected myself. ‘I meanI use Loop. It works for me. Perfectly.’

We don’t need to make excuses for doing diabetes our own way. If we truly have choice (which I know is not always the case), and we have made the choice based on what we believe to be the best possible treatment and technology for us at that moment, then surely that’s a great thing. We shouldn’t ever be made to feel less committed to our own health and wellbeing. That’s not how it works.

DISLCOSURE

I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.  

I never thought I’d be one to think about back-up plans the way I do now. A few years ago, I remember being extraordinarily proud of myself as I wrote this post about my diabetes spares bag. And then a couple of years ago, I thought I was remarkable and quite brilliant at being able to easily manage when I got to work and realised my insulin pump hadn’t made it with me. I thought I had every contingency sorted and was fabulously good at diabetes. Give me a medal, please.

But in the last six months or so, I’ve come to see I’m not quite as prepared as I thought. I probably should point the finger right now at David ‘Bionic Wookiee’ Burren for this. He has highlighted holes in what I thought was a well-planned strategy a number of times (‘What’s your RileyLink Bluetooth address, Renza? You don’t know? You should.’), shaming me into wanting to do better, and really making me question all my life choices at the same time.

Back-up planning has been covered in both the Australian and European Social Media Summits hosted by Ascensia (disclosure at the end of this post) and it is interesting to see that the level of organisation and preparation varies so much in those of us living with diabetes.

Some people have thought out every possible contingency and have a plan for each one. Others have a fixed idea about what might go wrong and have made accommodations for those (that’s me). And others figure that it will all work out and the diabetes gods will sort it out.

I guess that personality type comes into how well-equipped we all may be. Some of us have a far more lackadaisical approach to planning for the apocalypse than others. But I do agree that it never hurts to be prepared or to consider things that may never have entered your mind before.

So here are some things that I have learnt in recent times that have completely changed the way that I think about my back-up planning.

It’s not just about kit (1). It’s all very well to have back up for what happens if (for example) your pump dies, but if that means returning to MDI until a replacement can be delivered, actually knowing how to do MDI is important. (Bless my endo who always asks if I need any long acting insulin ‘just in case’. She gave me some in-date long acting insulin and we had a discussion about what doses would look like after I proclaimed ‘It’s been 18 years since I gave myself a dose of long acting insulin. And it was Protophane. I have no idea what I am doing.’Lovely endo didn’t even roll her eyes at me when she walked me through exactly what I’d need to do to ensure my basal dose was right and the timing of the injections.)

It’s not just about kit (2). Look – my back up plan to my pump dying is another pump. I have a couple in the diabetes spares cupboard and always travel with one. But I don’t carry one around with me on a day-to-day basis. If I was a couple of hours from home and my pump died, I’d need to know what to do in the meantime. Again – it’s been 18 years since I was on MDI, but I always have a spare syringe and insulin with me so I can bolus until I get hooked up again to a working pump. My injection technique is scratchy – very scratchy, but in a pinch, I can manage it. There’s nothing wrong with asking for some re-education on something for which you may be a little out of practise.

Apparently my long-held belief that the DOC is my back-up plan is not actually adequate, because who is going to be able to provide me with insulin/pump consumables/spare pump/battery/RileyLink at 3am when things like to go wrong. (This is despite the success of the whole Pumpless in Vienna story.)

Equally, having a neighbour with type 1 diabetes two doors down is great when I need a Dexcom sensor at breakfast time. But it would probably stretch and test the neighbourly spirit if I woke her and her family in the middle of the night because I desperately wanted my loop to turn back to green and needed a sensor to do that.

I need a back-up of EVERYTHING I use if I want to be able to seamlessly manage any issue that comes up. With Loop that means a spare Loopable pump, a spare Riley Link, a spare G5 transmitter as well as all the necessary consumables. That takes expense as well as organisation.

CABLES!! They need to be part of my back up plan. I was at a conference last year somewhere (can’t remember where) and remembered as I was about to sleep that I’d forgotten the charger to my RileyLink. And just last month didn’t charge it overnight, meaning that my Loop turned red while I was at work and I was unable to do anything until I got home. Carrying the right charging equipment for all devices is important.

But! If I don’t have all these things, I need to ensure that I have a suitable, easy and fully ready-to-go option that will get me through until I can assemble all required to return to normal service.

When your back up plan becomes someone else’s back up plan, you need to do something about it. Case in point: at the DOCDAY event at ATTD, a friend leaned across the table and asked me if I had a spare battery for her Loopable pump. Of course I did, because there is always at least one in my spares bag. I handed it to her and made a mental note to pick up some more AAA batteries next time I passed a convenience store. Of course, I forgot all about it until Loop started complaining and that the battery was running low. Down to 4% battery and starting to feel a little nervous, I found a tiny little store in a backstreet in Brussels, crossing my fingers as I walked in that there would be a stash somewhere of what I needed. There was and I changed the battery just as my Loop app was showing 0% battery.

Beating ourselves up about our perceived or real lack of planning is unnecessary. As Sophie, one of the participants at #ATTDDSMS, said: ‘Life gets in the way.’ And it does. I challenge anyone not living with diabetes to do their normal life, live with diabetes and not only think about all the ‘just-in-case’ scenarios, but also prepare for each and every one of them.

But mostly, what I have come to see is that the point of a back-up plan is for it to be smooth and simple, with as little disruption to our day as possible. A plan that requires a cast of thousands, hours of travel, is insanely complex and relies on a number of external factors that are potentially beyond our control is not really going to make executing our plan all that easy, or give us peace of mind. And that’s a big part of what this is all about – feeling confident that we can manage whatever gets thrown at us.

That is, after all, the nature of this condition we live with.

DISLCOSURE

I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference. 

I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.  

I have been interested in discussions about time in range (TIR) for some time now. It has become a key way that I assess just how I am tracking with Loop and, as I wrote earlier this year, really the only measure I’m interested in. I like it because it can give me real time information about how I am tracking. It shows that when I am at a conference and not eating properly, but doing more activity than I normally would, my TIR is going to be less than if I was at home in a regular routine. It also shows what happens when I’m not Looping for ten hours (thanks to a variety of factors) my TIR plummets!

At ATTD this year, there was a symposium dedicated to the topic and from the standing-room-only crowding of the hall, it’s clear that a lot of others are interested too. In the few presentations I attended about the Medtronic 670G, TIR was frequently referred to (in one study there was a slight increase in TIR after PWD had been using the device for 8 months, although significantly lower than what people using DIYAPS are reporting.)

Just as I did while live tweeting the session, I have to address the issue of access to the technology. TIR is all very well, but it takes tools, and those tools are prohibitively expensive. Some places have no subsidies available for CGM or Flash, others have limited reimbursement programs. And, of course, there are places around the world where accessing glucose strips is a near impossibility.

TIR is a measure for a very, very privileged few, and as much as it’s held up as the future of diabetes, it is simply incorrect and misleading to suggest even for a moment that most people with diabetes have this data at their fingertips. (They barely have finger prick data at their fingertips.)

But, this is a conferences about the latest in technologies and treatments, so let’s talk time in range…

Dr Irl Hirsch is an MD from University of Washington, Seattle. His session as listed in the program was: ‘Time in Range vs. HbA1c: Are our patients ready to change?’, but he changed it to a far more suitable ‘Time in Range vs. HbA1c: Are our patients and health-care colleagues ready to change?’

Irl’s short talk was an absolute cracker and started by exploring what we already know – A1c is flawed. We’ve known this for years, but it’s taken having easy access to CGM data to truly appreciate just how flawed. The two points he raised to back this up were A1c levels can’t be compared between two people (and yet that happens all the time!); each A1c comprises a wide median glucose range. In other words, A1c sucks (they were his words, not mine!).

And then the talk got fun as the focus shifted to just how ready different groups were to shift from a focus on A1c to TIR. The three groups were: people with diabetes (and their families), endocrinologists and non-endocrinologists. Irl presented the results from a survey of diabetes HCPs asking their thoughts on the readiness of those three groups to embrace TIR. Here are the results:

The HCPs surveyed all believe that PWD are by far the most ready to change from A1c to TIR. At the same time they believed that no non-endo HCPs were ready. We really have a problem.

The survey participants offered a lot more than just their assessment of the readiness for this shift. They provided extra comments about some of the barriers to the change. This is how some of the HCPs (all working in diabetes) assessed the inclination for PWD to move to TIR:

But perhaps the most unsettling was what they thought about non-endocrinologists willingness to start to talk TIR. (I think that they were mostly referring to primary care physicians.)

As the list was read out, and the audience responded accordingly, my confidence level about how likely it was that TIR would start to become the norm shrank away. This is despite the way that many PWD have already adopted the measure and use it daily.

In the online groups where I spend a lot of time playing, it is clear that we are already very comfortable and committed to talking TIR. People frequently post their Dexcom Clarity data showing the super-nifty image of how much time they have spent in and out of their self-determined range. This is the language we speak.

But despite my unease about just how quickly the shift will happen, it has definitely begun. The International Consensus on TIR was presented which included targets for people with type 1, type 2 and for women during pregnancy. Plus there was evidence presented that showed TIR can predict the likelihood of diabetes-related complications. With all this, and the demand from PWD, we will be hearing about this more and more in coming years.

Looking for more?  This piece by Irl Hirsh, Jennifer Sherr and Korey Hood was just published in Diabetes Care is a really interesting commentary on the issue.

DISLCOSURE

I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference. 

These days, it’s impossible to be at a diabetes conference and not have at least one conversation somewhere about language. Sometimes there are sessions dedicated to the topic on the program, but that wasn’t the case at ATTD a couple of weeks ago – a conference solely devoted to advancements in diabetes technology and treatments.

But despite there not being a session about language, it was still a hot topic. My eagle eye was trained when walking through the exhibition centre for examples where diabetes is misrepresented or the language used stigmatises people living with the condition. And in sessions, I immediately heard terms that suggested that we are misbehaving because the results of treatments aren’t living up to their promise. (A new one: I heard the statement ‘People with diabetes on <therapy> were not performing as expected’ which now makes me think that we are being trained, watched and judged by pageant mums/moms.)

At the Ascensia Diabetes Social Media Summit (more on that another day), there was a discussion about language and diabetes-related complications. This event was a follow on from the one we had at the Australia Diabetes Social Media Summit, and took the initial conversations and expanded it with a new group of PWDs.

Once again, as the discussion unfolded, it was clear to see that the PWD in the room all had experiences where the language they were faced with had impacted negatively and positively. One person commented that early on in their diagnosis, a health professional had addressed diabetes-related complications by saying ‘If you are diagnosed with a diabetes-related complication it will not have been your fault.’ What an empowering way to begin the discussion about complications, care and risk reduction!

I’ve been talking about language for a number of years. Some may call me a one trick pony and, honestly, that’s fine. My appetite for the subject matter has not diminished one bit despite more than a decade of speaking and writing about why language is so important and holds such power.

Language is not a one dimensional issue. Additionally it does not necessarily have a ‘right way’ to do it – especially when looking at it from the perspective of the person living with diabetes. The work I have been involved in has never been about policing the words used by people with diabetes, but rather how words used by others affect us.

It’s why the piece Grumps and I wrote for BMJ  was important – it targeted healthcare professionals, explaining to them why the words and language used around diabetes-related complications needs to not make us feel hopeless. Because that is what can happen and when we feel that way, it is all too easy for diabetes to seem just too big and too hard and too much.

I have frequently written about how diabetes can become so overwhelming, that it can leave us unable to attend to even the most basic and mundane of diabetes management tasks. I myself have been paralysed by the detail and demands of this health condition. I understand that there are times when a conversation about language is not possible, because, quite frankly, there is a lot more to deal with. I know that there have been moments when even though I can hear judgement and blame in the words being directed at me, all I want to do is find a way out of what feels like a hole. I’ve heard others say that they have felt harshly treated by HCPs, but simply didn’t have the capacity to try to deal with that because there were other things higher up on the list.

And I am sure that there are people who simply wouldn’t even know where to begin if the words and language being directed at them were disempowering and negative.

But that is exactly why language matters. It is for the people in those situations – for me when I was in that situation – that we need to get the way we communicate about diabetes right.

I am so sick of people trying to delegitimise the language discussion, or, even worse, reduce it to something that is insignificant. It frustrates me when the discussion returns again and again and again to the diabetic/PWD debate. As I said at the Ascenisa event at ATTD when we were discussing the annoying way some try to redirect meaningful discussion back to this single issue: ‘You can call me Blossom for all I care, language is about far more than this.’

And I think that while it is critical that we acknowledge that sometimes the language issue isn’t going to be a priority for some (by choice or otherwise), it seems unfair – and a little counter-intuitive – to diminish its importance, or criticise those of us trying to keep it on the agenda and actually do something about it.

(Click for original tweet)

DISLCOSURE

I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference. 

Let me tell you what is worse than jet lag. Jet lag combined with food poisoning. These are the two extra circles of hell Dante forgot about.

While I am recovering and trying to get my body to accept coffee again, here are some photos from last week’s ATTD conference which was in equal measure amazing, overwhelming, frustrating, intimidating, brilliant and exhausting. I’ll explain more in coming posts, but for now, enjoy the images.

How to deal with jet lag when arriving in Europe #1: night time walk to major tourist site and be amazed.

How to deal with jet lag when arriving in Europe #2: find (half) decent coffee.

How to deal with jet lag when arriving in Europe #2.1: drink all the coffee.

And then drink some more.

#docday is always a highlight. Little dogs called Jamaica make it even better. (Jamaica on the left; Bastian on the right.)

Hello Solo… New pumps headed our way.

MySugr is ALWAYS on message.

Flavour of the conference #1: DIYAPS

Flavour of the conference #2: Time in Range

Vegetables. I craved them.

Because there were so, so, so many dense carbs!

Not that I was complaining. (Especially when mini doughnuts came in Diabetogenic colours!)

Oh – did I say that #SpareARose was mentioned? A lot?

Such as at #docday. (Grumps looking especially grumpy because I’d just announced #SpareAFrown.)

And then? Then there was the smile-a-thon, as we smashed through target after target.

Next week, I’ll go into detail about some of the different sessions, highlights and satellite events I attended. It was a frantic few days – so worthwhile in every possible way. And as always at these conferences, finding those who live diabetes – themselves or with a loved one – provided the necessary grounding throughout the conference. This year, that support was even more pronounced with every single person who was asked to step up to promote #SpareARose doing so in spades. This is all the community. That is what it is all about…

DISLCOSURE

I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference. 

Last November I spoke at the HIMSS (Healthcare Information and Management Systems Society) conference in Brisbane (and wrote about it here). I was only flying up for the day and my schedule had been diligently planned but the HIMSS team, utilising every single moment I was at the conference centre. I was in two sessions, but before that, I was to be filmed for HIMSS TV.

Best paid plans, and all that – my flight was delayed. By quite a bit. The interview would need to be rescheduled. I landed, unsure if I would make it in time for my first talk, and begged the taxi driver to do all he could to get me there on time. The man was a miracle worker, delivering me to the conference centre five minutes before my first session started, and I walked onto the stage with the sound guy’s hand halfway down my dress (the back of it, settle down), mic-ing me up as the chair was introducing the session.

As soon as the second session was done, I was whisked away for the interview. We were running through the conference centre halls (this time the sound guy was trying to retrieve the mic he’d affixed on me earlier – we’re now very good friends), to get to the interview area.

I had literally 15 minutes before I needed to get into a cab to head straight back to the airport for my flight home, but the HIMSS team was determined to get me chatting on camera. Good thing I talk so fast.

Also, good thing that I was asked to speak on a topic that I could happily blab on about for hours. While underwater. I was there to speak about person-centred care in healthcare.

I find it a little odd that the title of the interview is ‘Disrupting diabetes treatment with a person-centred approach’, because we have been talking about this for a long time. This isn’t new; it’s not disruptive. But clearly, it’s still something that we need to be talking about, because I think that there is far too much lip service and not enough action when it comes to patient-centred care.

I’d completely forgotten all about the interview until someone tagged me in a post on Twitter and LinkedIn when the interview was launched just after New Year. You can watch it by clicking on the image below. I talk very fast…I had a plane to catch.

 

It’s Melbourne Cup Day today and I’m bound for Brisbane for the HIMSS Asia Pacific conference. I’m speaking in the consumer partnership track, which allows me to get on one of my high horses (Cup reference #1) to speak about the importance of including health ‘consumers’ in…well, in everything.

Right out of the gates (Cup reference #2) I will be speaking about how a health conference that doesn’t allow for people living with that health condition to attend is already not partnering properly.

I want to look at the word ‘partnership’, which I actually think is a bit of a misnomer most of the time in healthcare. There remains such an imbalance of power and representation in most cases of the development and delivery of services, activities and resources, yet partnership suggests that everyone is equal. I can’t count the number of times I have been ‘the’ consumer representative in a roomful of healthcare professionals, researchers, administrators, industry reps and policy makers. They will all be there in droves, and there I am a lone voice.

If I’m being honest, I think that the idea of partnership needs to be questioned, because that suggests that everyone’s voice should be equal. Perhaps it’s a little radical to think this way, but quite frankly, I don’t think everyone’s voice should be equal. I think the most amplified voices – yes voices – should be those of the end user – the consumer.

My talk is also going to highlight tokenism in consumer partnerships and engagement. The idea that ‘any consumer will do’ is rife. How do I know that?

Well, I get contacted every week asking me to be a consumer rep on something or other. Most times I say no and recommend someone better suited. Such as the time (just a few weeks ago) I was invited to sit on a committee looking at programs to support men with type 2 diabetes diagnosed in their 50s, living with erectile dysfunction? When I pointed out that finding a few men with type 2 diabetes diagnosed in their 50s would actually make sense, I was told that I would do a fine job representing them. Yeah – no I wouldn’t. Because I know nothing about being a man, being in my 50s, having type 2 diabetes, or erectile dysfunction. How’s that for a quadrella? (Cup reference #3)

But the one issue I want to focus on – because I think it actually is a super easy concept to grasp – is the issue of influence, or rather the consumer’s ‘power to influence’. This is a biggie because for me, it is the cornerstone of engagement, and it is actually quite easy to measure. We can have whatever framework in place – the policies, the procedures, the advisory boards and the teams dedicated to putting the consumer first – but if those consumers do not have the power to influence what is going on, they are being excluded from having any real power and we then we need to question if there is true partnership.

I keep coming back to this – I spoke about it at the co-design session at the Australasian Diabetes Congress this year. I have also written about it a lot here. And I talk about it a lot when I am speaking with organisations and industry about whether their so called engagement program is truly going to matter.

I’m not trying to oversimplify this – I understand there are a lot of factors to consider, and sometimes there is legislation and governance to work through. But governance can be restructured. As can legislation.

But maybe I am. Maybe I am trying to make it easy because too often there is fear and uncertainty about how to engage, and this leads to either things being done poorly. Or not at all. And to be honest, I’m not sure which one is worse.

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.

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