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The last time I was in Stockholm was seven years ago for the 2015 EASD Conference. This year, as I walked to the conference centre from the train, everything about the venue flooded back. ‘Here we go again,’ I thought. Except this time was different.

I wrote this about #EASD2015:

‘There is much mention of the ‘patient perspective’ and on Monday there was an entire symposium dedicated to it. Unfortunately, there wasn’t an actual ‘patient’ on the panel, which surely is weird...But despite the limited presence of PWD in the official programme, there are a lot of satellite events and activities taking place.’

One of those satellite activities was the first ever #docday°. It was in a musty, overheated, overcrowded back room of a co-working cafe, and it brought together a rabble of diabetes advocates from around the world who had somehow made their way to EASD. I think most of us were there with Roche or Johnson and Johnson for one of their blogger events.

But #docday° was different. This one was completely about and by people with diabetes, showcasing community and peer support. People shared their advocacy efforts and what they were doing in their own networks to support people with diabetes, and shared ideas about how others could do the same. Despite being all about diabetes, we were not welcome as a group at the biggest diabetes conference in Europe.

Fast forward seven years to this week, and the same spirit from the first #docday° event was visible. But this time, it was on stage as part of the scientific program at the conference. The #dedoc° Symposium was on the first day of EASD and it set a tone of inclusion and collaboration, making a very clear point that people with diabetes have a rightful place here, at professional conferences.

Adding to the #dedoc° symposium were the #dedoc° voices – diabetes advocates from across the world – participating fully in the conference. This is the largest scholarship program in the world for diabetes advocates and they made sure they were seen and heard! Everywhere! You only needed to walk the corridors of the conference to see the voices collaborating, not only with each other, but with health professionals, researchers and industry. Social media coverage of the EASD is dominated by the constant stream of ‘reporting back’. And almost evert single health professional I spoke with at the conference knew about #dedoc° and supported our very clear mission of #NothingAboutUsWithoutUs. How amazing is that?!

#dedoc° is all about inclusion. That’s why we can, hand on heart, say that we welcome advocates from around the world to become a #dedoc° voice. But it’s more than that. Our events are open to everyone, including our symposia at diabetes conferences. At EASD, our session was the only one that was live streamed to everyone and anyone via our socials channels. No one needed a costly registration to get inside the Stockholsmassan or another way in. Everyone could see Andrea Limbourg speak about some incredible work from advocates in Indonesia, France and Ireland, and Jeff Hitchcock explain how Children with Diabetes managed to keep supporting families of kids with diabetes throughout COVID, and Tom Dean share details of the brilliant #DiabetesChat and how he has embraced the idea of providing a truly welcoming platform for diabetes friends from around the world to gather on Twitter Spaces for a weekly chat. And Bastian Hauck tell the story of that overheated room for the first #docday° and how what happened on that afternoon planted a seed for a global movement of people with diabetes. #dedoc° provides a platform to elevate others. It’s a privilege to be part of it. 

If you missed the #dedoc° symposium at EASD, here it is!

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

Psst…forgotten something?

If you’re in the northern hemisphere right now, you’re possibly all caught up in the sunshine, splashing around at the beach or spending time off work just taking time out. If you’re from the southern hemisphere, you’re either smart and have taken a holiday to Europe because EVERYONE.IS.IN.EUROPE.RIGHT.NOW, or under fifteen quilts in front of a roaring fire, counting down the days until it gets warmer. Sadly, I’m in the latter group.

I get it. Things slip by either way. 

But! You only have a few days left to make sure you don’t miss out on applying for a #dedoc° voices scholarship. Wherever you are, a scholarship means you have something to look forward to in a couple of months’ time and the absolute thrill of either virtually or in-person attending a global diabetes conference or two. That’s right – TWO! EASD (European diabetes conference) and ISPAD (paediatric diabetes conference) are the next international conferences on the diabetes conference calendar. Both will be hybrid, with the in-person locations being Stockholm and Abu Dhabi respectively. 

We’re well over two years into the #dedoc° voices program now, and the awesome thing about it is that it’s not just about the few days of the conference where you get to learn from incredible researchers and clinicians, while waving the lived experience flag and being surrounded by others with diabetes. I mean, that is all pretty great. But being a #dedoc° voice goes way beyond that!  Once you receive a scholarship you are part of a network of remarkable diabetes advocates from across the world, and this network is the most supportive, encouraging, brilliant group of people, always ready to help. Every single week, I see people reaching out for support and advice and the responses are swift and many. I’ve not seen a single example of anything other than support, and have watched advocates truly flourish as they have worked with others, developed mentoring relationships and been supported to do brilliant things. 

Unless you’re part of the program, you wouldn’t know this. And here’s the deal: anyone can become part of it. The #dedoc° voices program is open to people from across the world and everyone is in with an equal chance. You just need to spend some time completing an application. It is a competitive process, and places are limited. The people who get accepted are the ones who have taken some time with their application and really been able to demonstrate just how they are going to #PayItForward to their diabetes community if successful. No one is a shoe in; having a high follower count on socials means nothing if your application is sub-par. We take people who are new to the diabetes advocacy space, and are looking for a hand carving out their space, as well as seasoned advocates who are keen to work with others and become part of a global network, outside their own country.

So, get on it! Click on the image below, fill in the form and join us! You get to work on your advocacy while giving back to the community, all while wearing the #NothingAboutUsWithoutUs badge. How amazing is that?!

More on #diabetogenic about the #dedoc° voices program:

#dedoc° voices helping people with diabetes get into professional conferences

How #dedoc° voices supported people with diabetes in Ukraine

More on why to apply to join the #dedoc voices program

Disclosure

I have been an advisor for a number of years, and am now working with them as Head of Advocacy. 

One of the real pleasures of working in the health sector has been learning from people outside the diabetes space. So much of my work is contained to the goings on in the World of Diabetes, but it is always fascinating to hear from people who are dealing with different health conditions. 

And so, it is no wonder that I was enthralled during an event I was involved in for APPA a few months ago. One of the things I really appreciated about this webinar was APPA bringing in discussions about person-centred care, person-centricity, and the role of lived experience in medical affairs. It’s a tricky area thanks to obstructive codes that often act as a barrier to real engagement and involvement from those of us with lived experience.  

I was thrilled to hear from Richard Vines, Founder and CEO of Rare Cancers Australia, especially his thoughts about the role of people with lived experience of rare cancers in his organisation’s advocacy efforts. 

Richard spoke about how active and involved families of people with lived experience of rare cancers are in their advocacy efforts. He told a lovely tale of the myriad notes and small gifts in the (now previous) health minister’s office that had been sent to him from families who he’d met through the organisation’s lobbying and advocacy campaigns, thanking him for increasing funding and helping raise awareness of rare cancers and the challenges faced by people diagnosed with one. Richard shared that involving and including those people in all their activities was key to his charity’s success. It didn’t surprise me one bit that his attitudes closely mirrored the ‘Nothing About Us Without Us’ calls that form part of my daily advocacy. 

The APPA event was back in March, and it coincided with the handing down of the Australian Federal Budget. I, along with many other people with diabetes, were devastated to learn that there was no funding allocated to broadening access to the NDSS CGM initiative. That, of course, came a month later as an election promise, but at the time, we didn’t know that. 

Before that bipartisan election promise, many people with diabetes had dual frustrations of being blocked from affordable access while at the same time knowing that there have been Living Evidence Guidelines for type 1 diabetes technology for over a year now that clearly state that CGM is recommended for all adults with T1D (over BGL monitoring). 

It makes no sense that professional and lived experience bodies have taken the latest and best evidence to provide guidelines for the best use of technology in the management of type 1 diabetes only to have limited funding to make it a reality. But I wondered just how many people the health minister had heard from – really heard from – to understand that. I wonder if he has letters of thanks from people with diabetes in his office.

The message that came home loud and strong from Richard Vines was that advocacy success is more likely when there is strong representation from those with lived experience to round out the story provided by evidence and guidelines. Hearts and minds. Minds and hearts. 

We need more ‘hearts stuff’ from those that generally use evidence to support their case, and more ‘mind stuff’ from those who generally use lived experience to support theirs. And the lived experience must come – it can only come – from those with real skin in the game, not those adjunct to it, or claiming to speak for it. 

Disclosure

I was invited to be a panellist for this Australian Pharmaceutical Professionals Association webinar and volunteered my time. 

Throughout ATTD I got to repeatedly tell an origin story that led us to this year’s #dedoc° symposium. I’ve told the story here before, but I’m going to again for anyone new, or anyone who is after a refresher.

It’s 2015 and EASD in Stockholm. A group of people with diabetes are crowded together in the overheated backroom of a cafe in the centre of the city. Organising and leading this catch up is Bastian Hauck who, just a few years earlier, brought people from the german-based diabetes community together online (in tweet chats) and for in person events. His idea here was that anyone with diabetes, or connected to the conference, from anywhere in the world, could pop in and share what they were up to that was benefitting their corner of the diabetes world. I’ll add that this was a slightly turbulent time in some parts of the DOC in Europe. Local online communities were feeling the effects of some bitter rifts. #docday° wasn’t about that, and it wasn’t about where you were from either. It was about providing a platform for people with diabetes to network and share and give and get support.

And that’s exactly what happened. Honestly, I can’t remember all that much of what was spoken about. I do remember diabetes advocate from Sweden, Josephine, unabashedly stripping down to her underwear to show off the latest AnnaPS designs – a range of clothing created especially to comfortably and conveniently house diabetes devices. It won’t come as a surprise to many people that I spoke about language and communication, and the work Diabetes Australia was doing in this space and how it was the diabetes community that was helping spread the word.

I also remember the cardamom buns speckled with sugar pearls, but this is not relevant to the story, and purely serving as a reminder to find a recipe and make some.

So there we were, far away from the actual conference (because most of the advocates who were there didn’t have registration badges to get in), and very separate from where the HCPs were talking about … well … talking about us.

Twelve months later EASD moved to Munich. This time, Bastian had managed to negotiate with the event organisers for a room at the conference centre. Most of the advocates who were there for other satellite events had secured registrations badges, and could easily access all spaces. Now, instead of needing to schlep across town to meet, we had a dedicated space for a couple of hours. It also means that HCPs could pop into the event in between sessions. And a few did!

This has been the model for #docday° at EASD and, more recently, ATTD as well. The meetups were held at the conference centre and each time the number of HCPs would grow. It worked! Until, of course COVID threw a spanner in all the diabetes conference works. And so, we moved online to virtual gatherings which turned out to be quite amazing as it opened up the floor to a lot of advocates who ordinarily might not be able to access the meetings in Europe.

And that brings us to this year. The first large international diabetes conference was back on – after a couple of reschedules and location changes. And with it would, of course, be the global #dedoc° community, but this time, rather than a satellite or adjacent session, it would be part of the scientific program. There on the website was the first ever #dedoc° symposium. This was (is!) HUGE! It marks a real change in how and where people with diabetes, our stories and our position is considered at what has in the past been the domain of health professionals and researchers.

When you live by the motto ‘Nothing about us without us’ this is a very comfortable place to be. Bastian and the #dedoc° team and supporters had moved the needle, and shown that people with diabetes can be incorporated into these conferences with ease. The program for the session was determined by what have been key discussions in the diabetes community for some time: access, stigma and DIY technologies. And guess what? Those very topics were also mentioned by HCPs in other sessions.

There have been well over a dozen #docday° events now. There has been conversation after conversation after conversation about how to better include people with diabetes in these sorts of events in a meaningful way. There has been community working together to make it happen. And here we are.

For the record, the room was full to overflowing. And the vast majority of the people there were not people with diabetes. Healthcare professionals and researchers made the conscious decision to walk into Hall 118 at 3pm on Wednesday 27 April to hear from the diabetes community; to learn from the diabetes community.

If you missed it, here it is! The other amazing thing about this Symposium was that, unlike all other sessions, it wasn’t only open to people who had registered for ATTD. It was live streamed across #dedoc° socials and is available now for anyone to watch on demand. So, watch now! It was such an honour to be asked to moderate this session and to be able to present the three incredibly speakers from the diabetes community. Right where they – where we – belong.

DISCLOSURE

My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am now working with them as Head of Advocacy. 

Thanks to ATTD for providing me with a press pass to attend the conference.

Gosh, there’s lots in the #DOC-iverse (#DOC-osphere?) about seeing diabetes, isn’t there? Yes, yes there is. Not sure about you, but I seem to be seeing a lot of bright, shiny, happy people (and a pop star or model or two) talking about diabetes, when usually they are pretty quiet about the whole diabetes thing. Which is fine. No one needs to spend their time advocating all about diabetes every minute of the day. 

But I wonder if any of the marketing boffins who threw together their messages of inspiration bothered to check to see what the International Diabetes Federation are up to for World Diabetes Day on 14 November. Afterall, that’s the showstopper event of the month, isn’t it? Celebrating the birthday of the bloke who I give thanks to every day for keeping me alive.

A bit of history about World Diabetes Day to help understand that it’s not just about privileged folks with diabetes showing off their high-tech gadgets strapped to their impossibly beautiful bodies. (And yes, I know I sound like the Grinch who stole World Diabetes Day, but I think that understanding the foundation of this day is kind of important because that all seems to get swallowed up in PR spin.)

World Diabetes Day means something. In 2006, it became an official United Nations Day thanks to United Nations Resolution 61/225. At the time it was one of only two official UN health days. But even before that, World Diabetes Day had been going on for some time. It was in 1991 that the IDF, together with the World Health Organisation, created World Diabetes Day in response to growing concerns about diabetes. 

Over the last thirty years, World Diabetes Day themes have aimed to be inclusive of people from around the globe, but perhaps there has been a (necessary) focus on how to improve diabetes outcomes for people in under-resourced countries. Maybe that’s why I find it a little galling when it appears that the day is about showing off your latest diabetes kit or shouting to the globe about how diabetes doesn’t stop people reaching their dreams. I love positivity and I’m often accused of being far too Pollyanna for my own good, but having a good look beyond our own privilege is important if we’re trying to get across a global idea of what is going on in the world of diabetes.

This year the theme is ‘Access to care: if not now, when?’. The World Diabetes Day website is full of resources that explain the theme. There are materials you can share to help explain just what access means to different people. 

It all seems to be a little bit of a throwback to community initiatives of the past. The diabetes community has been the creators of some absolutely stellar campaigns – ideas that seem to have been founded in similar frustrations about which I’m smashing on my keyboard today. In 2014 there was a campaign that asked us to ‘Put the World back in WDD’ which was in response to there being a very Western focus on World Diabetes Day. Sometimes it feels that some things never change. The #Insulin4All hashtag that was first used to highlight how people in under-resourced countries struggle to access insulin is now most often linked with insulin pricing in the US.

Access means different things to different people, and the materials the IDF has put together consider this. Even if you live in a well-resourced country, with decent subsidised, tax-payer funded (never free!) healthcare, it’s likely that some part of your diabetes care is still difficult to access. It may not be insulin or diabetes supplies that are your access issue – it could be mental health support or different tech solutions.

Here in Australia, thanks to Medicare, the PBS and the NDSS, we have well-subsidised diabetes care. It’s not perfect, but it is certainly better than I hear from friends in other places around the world. But there definitely are still deficiencies in our care. Mental health care is limited – and almost impossible, it seems, to access. Only 50% of people with type 1 diabetes can access subsidised CGM and Flash GM through the NDSS. People in rural and remote areas of the country have far more difficulty accessing quality, regular diabetes care. The outcomes for Indigenous Australians with diabetes fall far behind. As always, people who are disadvantaged in some way are disproportionately affected, and face more difficulties accessing the care they need.  

How you choose to celebrate (or not) this month and World Diabetes Day is entirely up to you. You may choose to ignore the ‘official’ theme of the day and focus more on other initiatives and once again, all perfectly okay. Just as YDMV, so may your diabetes advocacy. 

But if you are interested in focusing more on access, have a look at the World Diabetes Day website and pledge your support for greater access to diabetes care. Read about the Resolution that was adopted by United Nations Member States that calls for urgent, coordinated global action on diabetes. 

Look, I know. UN Resolutions don’t sound nearly as sexy as a six pack with a CGM plastered to it, but it is pretty cool that the WHO and the UN are talking diabetes. 

And while celebrating the centenary of insulin, learn where insulin is not easy to come by, and why that is. Through volunteer work supporting both Life for a Child and Insulin for Life, I have learnt a lot about the challenges faced by people with diabetes in under-resourced countries. If you can, please consider making a donation this month to either, or both, charities. 

And if looking to the community, it’s wonderful to know that there will be a docday° event on World Diabetes Day that is dedicated to the theme of access. You can learn more about that event here. It’s free to join, and will be live streamed on Facebook – you don’t even need to sign up.

But perhaps a final thought. How great would it be if those with really, massively high followings, (and followings not-only-in-the-diabetes-community), used this time to talk about making a real difference – a difference to people with diabetes who are struggling to access the basic drugs and supplies to actually live with the condition. 

Sure, ‘seeing diabetes’ helps raise awareness, but as ever, I ask how much of that actually cuts through and gets out of the community that is already seeing diabetes every single minute of every single day? 

A poster from the IDF World Diabetes Website. (Click image to be taken to site.)

Last week’s Diabetes Australia Language Matters Global Summit was a terrific, snack-sized event that packed a lot into (just over) an hour. An absolutely stellar panel including Greg Johnson, Jane Speight, Partha Kar, Stephanie Haack, Nina Tousch and Tim Skinner made for an interesting, hopeful, encouraging and enjoyable discussion. I’m really proud of the way we were able to bring together people with diabetes, clinicians and researchers, offering different perspectives and ideas about why language matters.

During the event, Diabetes Australia launched our latest Language Matters Position Statement – ten years and one month after we launched our first. You can find it here.

If you missed the Summit, you can watch below.

Disclosure

I work at Diabetes Australia. I was involved in organising this event and hosted the panel discussion. I’m sharing this because I am choosing to.

Another large diabetes scientific conference is happening and alongside it, another docday in the can. 

If you go back through the Diabetogenic archives, you’ll find a bucketload of posts about previous docday° events, including the very first one which was memorable for being in an overheated backroom of a café in Stockholm, the cinnamon buns served at said café, and Josephine, a diabetes advocate from Sweden stripping down to her underwear to show off her Anna PS gear. (If you’re looking for tops and jocks to snugly store insulin pumps, Anna PS is still the best place to go!)

It’s a far slicker event these days. Even before we went all virtual, the IRL events were held in cavernous convention centres alongside the actual conference. This was great for lots of reasons: it means that you can easily pop into docday° from the main program, and a variety of stakeholders started to come along. While docday° very much remains the domain of diabetes advocates and the work in the community, it was great to know that we were sharing our news with HCPs, researchers, industry and more. Plus, the temperature control was better. The biggest negative was that cinnamon buns were not as easy to find. 

Last night’s docday° was as memorable as ever, with a dynamic program of advocates from across the globe. A number of people wanted to address the issue of diabetes and stigma, and I introduced this topic with a quick overview of the Diabetes Australia National Diabetes Week Campaign, and one of the videos we made. From there, we heard Ken Tait and Michael Donohoe speak about the stigma experienced by people with type 2 diabetes, and Salih Hendriks and Dan Newman speak about how stigma impacts on open discussions about diabetes-related complications. Dan’s talk was one of the most powerful I’ve ever heard, and I will be thinking of his words for a long time. 

There was lots more in the two-hour event. Please do watch it!

I am an advisor to the #dedoc° voices program. I do not receive any payment for this role. 

I applied for and received a press pass to attend EASD 2021. 

I probably should stop thinking of my job as ‘my new job’. I’ve been at Diabetes Australia now for well over five years. But for some reason, I still think of it that way. And so do a lot of other people who often will ask ‘How’s the new job?’

Well, the new job is great, and I’ve enjoyed the last five years immensely. It’s a very different role to the one I had previously, even though both have been in diabetes organisations. 

One thing that is very different is that in my (not) new job I don’t have the day-to-day contact with people with diabetes that I used to have. That’s not to say that I am removed from the lived experience – in fact, in a lot of ways I’m probably more connected now simply because I speak to a far more diverse group of people affected by diabetes. But in my last job, I would often really get to know people because I’d see them at the events my team was running, year in, year out. 

Today, I got a call from one of those people. (I have their permission to tell this story now.) They found my contact details through the organisation and gave me a call because they needed a chat. After a long time with diabetes (longer than the 23 years I’ve had diabetes as an annoying companion), they have recently been diagnosed with a diabetes-related complication. The specific complication is irrelevant to this post. 

They’ve been struggling with this diagnosis because along with it came a whole lot more. They told me about the stigma they were feeling, to begin with primarily from themselves. ‘Renza,’ they said to me. ‘I feel like a failure. I’ve always been led to believe that diabetes complications happen when we fail our diabetes management. I know it’s not true, but it’s how I feel, and I’ve given myself a hard time because of it.’ 

That internalised stigma is B.I.G. I hear about it a lot. I’ve spent a long time learning to unpack it and try to not impact how I feel about myself and my diabetes. 

The next bit was also all too common. ‘And my diabetes health professionals are disappointed in me. I know they are by the way they are now speaking to me.’

We chatted for a long time, and I suggested some things they might like to look at. I asked if they were still connected to the peer support group they’d once been an integral part of, but after moving suburbs, they’d lost contact with diabetes mates. I pointed out some online resources, and, knowing that they often are involved in online discussions, asked if they’d checked out the #TalkAboutComplications hashtag. They were not familiar with it, and I pointed out just how much information there was on there – especially from others living with diabetes and diabetes-related complications. ‘It’s not completely stigma free,’ I said. ‘But I think you’ll find that it is a really good way to connect with others who might just be able to offer some support.’ 

They said they’d have a look. 

We chatted a bit more and I told them they could call me any time for a chat. I hope they do. 

A couple of hours later, my phone beeped with a new text message. It was from this person. They’d read through dozens and dozens of tweets and clicked on links and had even sent a few messages to some people. ‘Why didn’t I know about this before?’, they asked me. 

Our community is a treasure trove of support and information, and sometimes I think we forget just how valuable different things are. The #TalkAboutComplications ‘campaign’ was everywhere a couple of years ago, and I heard from so many people that it helped them greatly. I spoke about it – particularly the language aspect of it – in different settings around the world and wrote about it a lot.

While the hashtag may not get used all that much these days, everything is still there. I sent out a tweet today with it, just as a little reminder. All the support, the connections, the advice from people with diabetes is still available. I hope that people who need it today can find it and learn from it. And share it. That’s one of the things this community does well – shares the good stuff, and this is definitely some of the good stuff!

Want more? 

Check out the hashtag on Twitter here.

You can watch a presentation from ATTD 2019 here

Read this article from BMJ

At the last IDF Congress, I was invited to be part of the first panel on the opening morning of the meeting. It was all about diabetes and technology. Before the questions, the moderator, my friend Kyle Jacques Rose, asked everyone to introduce themselves. When it got to my turn, I said who I was and then shamelessly and unapologetically said I was the most important person the stage (along with Kyle and Manny Hernandez, who also live with diabetes). I remember looking steadily out into the audience as I made my claim to see the response. There was some who looked taken aback. And then some who cheered (thanks to the other PWD in the room!). 

Last week, I was in a two-hour workshop. I knew maybe half the people there. I also knew that I was the only person there to provide the ‘user’ experience. This isn’t uncommon, but it still drives me nuts when it happens, especially in a session that was about finding the right person-centred model of care in the age of telehealth. When it came to introducing myself, I thanked the organiser for inviting me, and said that it was great to be there…as the most important person in the (Zoom) room. One of the researchers I know well and who I have worked with quite a lot in recent years, smiled widely. At least I had one person in the room who got me. I watched again to see how others responded. Some certainly did look a little shocked. 

I explained that having people like me to feed into the work is critical, and that it was great that they wanted to hear from someone with lived experience to (and it would have been great to have seen a few other folks doing the same). 

So, how do I manage to be ‘the voice’ of lived experience when it comes to these sorts of things? When the meeting is diabetes-specific what do I say that captures the needs and wishes of every single person with diabetes? And, as in this meeting, when it’s about designing a system that is for all people with a variety of health conditions, how do I effectively and adequately tell the HCPs and researchers in the room just what it is that those people want?

The answer is, I don’t. Of course I don’t. 

I can’t speak to anyone else’s experience other than my own. I can’t say ‘I need this’ and assume that is what everyone else wants, and I would never make that assumption. Nor do I try to convince anyone that my needs and experiences are representative of anyone’s other than me. 

I will advocate until I am blue in the face that there needs to be many different people consulted and engaged in the design, delivery and dissemination of healthcare services, activities, and resources. Sometimes, that does happen. But if it is only me, I am never there to provide specifics of what needs to be done. In fact, I spend most of my time urging (begging and pleading) for assurances that there will be far more, far better, far meaningful engagement from this moment forward. 

I see my role is to pointedly, deliberately, unambiguously, and often, bolshily, make sure that the others in the room embed the idea of co-design in everything they do. And do it with wide representation.

I honestly don’t believe that there can ever be too much lived experience representation. But in the cases when there is only very little, I have rarely met anyone who claims to be the oracle of all things to do with lived experience or believe that their ideas are the only one worth listening to. In fact, anytime that has happened that person never is asked back. 

When I am asked to help find people for an advisory board, or to be involved in consultation, I always search for people who I know can look beyond their own experience. Again, it’s not because they are expected to speak for others. Rather it’s to know that there are others with different experiences and that, while they are the one at the table in that moment, they will do everything possible to make sure that those others are invited next time. 

And THAT, is why, at times like this, people like me are the most important people in the room – those of us who are banging a very loud drum to make sure that our cohort grows and grows. If you are working in healthcare and don’t have people with lived experience as part of the discussion, you’ve forgotten the most important people.

Stop what you’re doing, RIGHT NOW, and go find them. 

IDF Congress, Busan 2019. Opening panel. Some super important people on the panel. Manny, Kyle and I just happened to be THE most important.

Last night, all tucked up in my study at home, I participated in my eleventh (I think?) #docday° event. (A refresher: #docday° is a place for diabetes advocates from the diabetes community to come together, meet, mingle and share the work they are doing. The first #docday° was in a tiny, overheated backroom of a cafe in Stockholm that served outstanding cardamom buns. It coincided with EASD that year. After that, the events were moved to rooms at the conference centre where the diabetes meeting is being held, and an invitation is open to anyone and everyone attending, including HCPs, researchers and industry reps. I’ll link to previous pieces I’ve written about #docday° events past at the endow today’s post.)

The first #docday° for 2020 heralded in a new phase. It was at ATTD in Madrid, #dedoc° voices had been launched and that meant that there were even more PWD at the conference, attending #docday° and sharing their diabetes advocacy stories. All #dedoc° voices scholarships had been awarded to advocates from Europe because the budget wasn’t huge, and didn’t extend to flying in and accommodating people from other continents.

And then, the world changed, and flying and accommodating people at diabetes conferences didn’t matter anymore. And that meant that we could open up the scholarship program to people outside of Europe, and provide people from other parts of the world with registration to attend the EASD and ISPAD conferences. It means that mine wasn’t the only Aussie accent heard at #docday°. And it meant that people from further afield found their way to a seat at the table. These advocates – like the others I’d heard before them – were remarkable and doing remarkable things. I think perhaps the thing that has linked everyone who has been involved – wherever they are from – is their determination and desire to make things happen. It’s a common thread – that hard work and not expecting anyone to hand us opportunities that stands out.

A few years ago there was a discussion during a tweetchat about diabetes and advocacy, in particular about getting involved in advocacy efforts. In response to one of the questions posed – something do with how to get more people involved in advocacy – someone said something along the lines of ‘If someone gave me an opportunity to be an advocate, I’d take it.’ I remember being absolutely flabbergasted by that tweet, because, in my experience, that’s not how advocacy works. When I think of all the people who are visible in the diabetes advocacy space (and probably many that are not all that visible) no one was ‘given an opportunity to be an advocate’. It reminded me of the very first bloggers summit I went to at EASD in Berlin in 2012. As is usually the case when there are a group of PWD at an event together, there were questions online, asking why those people were there. Someone pointed out that it was a group of bloggers – people with diabetes who write and share their experiences about diabetes – and someone who was rather annoyed at not being invited said ‘Well, I’d like to have been invited. I don’t have a blog or write or anything, but I’d still like to be invited.’ Even then, relatively new to this all, I remember thinking ‘That’s. Not. How. This. Works’.

While no one is handing out ‘opportunities to be an advocate’, #dedoc° voices is helping in other ways. The program is open to everyone, and takes care of many of the barriers that make attending difficult. No one needs an invitation, or to be involved in a diabetes organisation, or work with industry, or to be invited. Every single person who is part of the diabetes community is welcome to apply. And if you are successful, you are given an opportunity to speak at #docday°. Actually, EVERYONE is welcome to speak at #docday°! Again, it’s just a matter of contacting the team and letting them know you are doing some great work that benefits your community.

At last night’s #docday°, I was (as I always am) in awe at what people are achieving and what they are doing. Tino from Zimbabwe is one of the most amazing advocates I’ve ever come to see, working alongside his local diabetes organisation to improve access to education in his country and beyond. Nupur, Snehal and Rohan from Blue Circle Diabetes Foundation in India are running a NFP, raising diabetes awareness with just one example of their work being a hotline they’ve set up to provide psychosocial support for PWD. And Sadia from Meethi Zindagi spoke about all the work the organisation is doing, with a special focus on the health needs of women with diabetes. We heard from Ines who built and grew a program that supports kids with diabetes to participates in sports, and Delphine who started and runs a club specialising in supporting runners and walkers with diabetes. Both women are from France and their talks last night made me put my runners today and beat the pavement around my neighbourhood! Still in France, Leonor and Nina spoke about one of the more recent additions to the #LanguageMatters movement with their new position statement.

There were others, but instead of reading about them here, why don’t you watch them. The video from the whole event is available for you to watch. I know you’ll be inspired. And I hope that if you have something you want to share you’ll think about joining in next time!

More about #docday°

docday° at EASD 2016

docday° at EASD 2017

docday° at EASD 2018

#docday° at EASD 2019

Disclosure

I am an advisor to the #dedoc° voices program. I do not receive any payment for this role. 

I applied for and received a press pass to attend ATTD 2021. Thanks to the Tadej Battelino and the ATTD team for making this possible to press accredited folks.

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