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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.

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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.

I’m heading to Sydney this morning (it’s early…too early) for the Australasian Diabetes Advancements and Technologies Summit – ADATS, (follow along at #ADATS2018), which had me thinking about the conference last year where I spoke about Loop, scared a shitload of HCPs, was almost traumatised into never speaking again in public (almost – didn’t happen) and was happy to be branded non-compliant.

Today will be a far gentler experience – my role is as a member of the organising committee, and as a session chair. Surely no one will want to sue me for that. Right?

As I ponder that, and reminisce about last year’s talk, here are some links. So many links that I have been wanting to share. So, have a cuppa, have a read, and share stuff.

Also, being deliberately non-compliant is kind of fun…

(Disclosure first: My flights from Melbourne to Sydney are being covered by the National Association of Diabetes Centres (NADC), the organisers of ADATS. I am on the organising committee for the conference.)

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Finally DIYAPS makes it to the mainstream media in Aus

I’d heard of The Saturday Paper, (which was a surprise to the journalist who interviewed me), but apparently not all that many people have. It’s a weekly newspaper (somewhat unimaginatively named – it’s a paper and comes out each Saturday) with long-form articles. One of those articles was about DIYAPS and came about after journalist Michele Tyde heard about the Diabetes Australia DIYAPS Position Statement.

Read the article here.

Read the DIYAPS Position Statement here.

The body part is connected to the PWD

‘Talking about the “diabetic foot,” the “diabetic kidney,” or the “diabetic eye” suggests they are somehow separate from the person whose body actually hosts the diabetes. This language suggests the diabetes-complicated body part is more like a malfunctioning car part that needs service – if only we could be provided with a courtesy foot, eye, or kidney to use until our own is better!’

The language at ADA this year (all the way back in June…all the way over in Orlando) didn’t really set off too many alarm bells. Until we had a good look at the program. I wrote this piece with The Grumpy Pumper for diaTribe about how it seems that #LanguageMatters a whole load less when talking about diabetes-related complications…and that needs to change.

Conference blogs

It’s great to see the Ascensia Diabetes Care team continue to support diabetes bloggers by inviting them to write up their thoughts on diabetes conferences. The latest contribution is from Sascha Stiefeling (who blogs at Sugar Tweaks) where he gives some insights into the start of EASD. (It was written in German and translated into English.)

Oh – and here’s the post I wrote for them about the Australasian Diabetes Congress a couple of months ago. (I was not paid to write this, or supported by Ascensia to attend, but I did work with them on their Social Media Summit.) 

No weakness at all

On Mental Health Awareness Day this year, UK writer and poet David Gilbert wrote this beautiful post about the strength – not weakness – of living with mental illness.

How we are wrong about obesity

This piece about obesity is a must read. It talks about how weight bias from healthcare professionals and stigma often results in higher weight people avoiding going to the doctor because they fear discrimination, not being believed and being shamed.

More on weight stigma

And read this piece (also on diaTribe) about how weight stigma hurts people and affects health outcomes.

Keep Sight

This week, Diabetes Australia officially launched the first ever national eye screening program, Keep Sight. The program will make it easier for Aussies with diabetes to get their eyes checked. You can read about the program here (from when it was announced back in July).

Disclosure: I work at Diabetes Australia, but was not asked to write about this program. I’m doing so because it is important.

Your story is important

True champion of listening to ‘the patient’, Marie Ennis-O’Connor wrote this wonderful piece about the power of storytelling in healthcare.

Always be kind

I’m always fascinated to read stories from HCPs who write about their experiences on the other side of healthcare. Moving from care-giver to the one needing care can be life-changing. In this BMJ Opinion piece, health researcher Maria Kristiansen writes about how important compassion and kindness from healthcare professionals were for her and her family during her young son’s illness and death.

More on kindness (because we can never have enough)

The first sentence of this article in BMJ by Dr John Launer had me hooked: ‘I’m not a clever doctor, but I’m a kind one’. Have a read.

Diabetes in hospital

I know I’m not the only one to be terrified of needing to go into hospital, worrying about a lack of knowledge about type 1 diabetes treatment and my technology, and having to fight to maintain ownership of my own diabetes care. Adam Brown at diaTribe has written about his recent trip to A&E, surgery and subsequent recovery after his appendix ruptured. Lots of great tips for anyone who may wind up in hospital.

Digital diabetes

How can digital medicine and research, and artificial intelligence transform diabetes? That’s the question research scientist in diabetes, Dr Guy Fagherazzi, asks in his (open source) review in Science Direct that you can read here.

Bake these!

And finally…It’s nearly the weekend and if you have a spare 20 minutes, you really, really should think about baking these! They are crackled parcels of molasses, spice and all things nice and are, quite possibly, one of the best things I’ve ever baked.

Earlier this week, Professors Jane Speight (ACBRD) and Frans Pouwer (Southern Denmark University) published a blog post on the ACBRD site, with their wrap up of EASD, specifically, the lack of psychosocial sessions at the conference. In the piece, Jane and Frans quite rightly say:

‘Psychology is not an optional extra. If diabetes care is the seat of a three-legged stool, then it is supported by three legs: psychology/education, treatment/technology and complications screening. It seems ironic that so much funding, resource and effort is put into strengthening and promoting the treatment/technology and complications ‘legs’, while the psychology/education ‘leg’ remains short and weak.’

EASD is the largest diabetes meeting on the calendar this year. It draws a truly international audience, with healthcare professionals and researchers from all disciplines. It is possible to speak with endocrinologists, diabetes educators, allied health professionals, general practitioners, psychologists, and researchers from all spheres of the diabetes care spectrum.

And yet, it is undeniable that the conference has a true clinical focus, almost forgetting that diabetes does not only impact specific parts of the body (so, so much about the ‘diabetic foot’!) but the whole person (absolutely not enough on the ‘diabetic mind’!).

I am not for a moment saying that the scientific and clinical elements of diabetes should be removed from a diabetes conference, or that they are not important. But I am saying that by demonstrating ONLY this aspect of diabetes, the picture presented is very, very incomplete.

I have written before that this is a frustration of mine at EASD, along with the continued lack of ‘patient representation’ on the conference program. It astounds me that there are no advocates on the official program, giving the ‘lived experience’ standpoint to what is being discussed. With hours and hours of sessions focusing on complications, how valuable it would be to have a PWD who is living with complications standing up there to give a little perspective to all the science. And a psychologist to speak about how complications affect far more than the part of the body that has become…well, complicated.

I urge the organisers and program committee to step up, and find a way to fill in the gaps and start to present a far fuller and more complete picture of diabetes.

While this would involve including more focus on the behavioural side of diabetes with the relevant professionals on the program, it must also mean including PWD into the program – in a meaningful way. If it is too much of a leap to include PWD alongside HCPs in the scientific program, introduce a Living with Diabetes Stream as the IDF has done in their last four World Congresses. It can be done. It can be done well. (And I say that with full disclosure that I am leading the stream at the 2019 Congress and was deputy lead for the 2017 Congress, and spoke at the 2015 Congress in the LWD stream.)

The thing is, it would actually be very, very simple to include PWD in the EASD program because we are already there. This year in Berlin marked the seventh EASD conference I have been fortunate to attend. I have always gone because of satellite events designed specifically for PWD. Initially, these were run by Johnson & Johnson, and more recently Roche, who has taken the ‘patient engagement’ to a new level, running events with up to seventy bloggers. That’s seventy people who have a story to share about their own diabetes experiences.

And I know that many of those seventy people would want to talk about all aspects of living with diabetes, including the psychosocial impacts.

As a leading annual diabetes meeting, EASD could be better. It ticks a lot of boxes. But it could, quite easily, tick a whole lot more by being far more wholistic in its approach. Focus more on the behavioural side of diabetes. And have PWD front and centre where we belong. After all, we’re the ones all this information and research is meant to be benefitting.

DISCLOSURE

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. As always, my agreement to attend their blogger day and participate in their media event does not include any commitment from me, or expectation from them, to write about the company, the events or their products. 

With Jane Speight at EASD in Berlin.

#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.

I have spent a lot of time listening to presentations about diabetes. It’s one of the perks of the job – hearing from leading clinicians, researchers and advocates is a privilege I never take for granted.

Often, I am mesmerised as the speaker holds court, sharing details of a new study, intervention, clinical program or anything else that they are working on.

Usually, I sit there interested, listening to what is being said, live tweeting content and wondering what this means for the average diabetes punter in their day-to-day diabetes life. Occasionally I am completely and utterly blown away by something – even if it just a small comment in the overall talk – and that is what happened last Monday.

I had been asked to sit on a panel at the Roche Media event, which is a morning for health journalists. The program was jam-packed and the panel session tied together the presentations from earlier in the day. I was coming from another meeting, so unfortunately, I wasn’t there for the whole morning, but I arrived just in time to hear Professor Stephan Jacob, a diabetologist from Germany.

The theme for the whole day was ‘Connecting the Dots’, with Roche continuing to promote their development of a connected eco-system with PWD in the centre, linked with HCPs, health systems, policy makers, industry, data and more.

I have become pretty good at getting a read on the way HCP and researcher presenters regard PWD. A lot of this is in the language they use (i.e. use the word non-compliant, and it’s not looking good…). Immediately, it was clear from the way Stephan was speaking that he understood the whole self-management nature of diabetes, the burden that a chronic and demanding condition such as diabetes places on the lives of those living with it and those around us, and who is responsible for the day-to-day management of diabetes. It was also clear that he understood the barriers that we face to optimising our own care.

The moment in his talk last week that had lightbulbs going off in every direction was when he made a comment about diabetes messaging, which went something like this:

‘If someone comes into a clinician’s office and has elevated blood pressure, we take note straight away. We consider the right medication and what needs to be done, and then we usually see them again a week later, maybe less. But diabetes? When someone come in with out of range glucose levels, we may make a few tweaks; we may tell them to go for a walk after dinner; we may change some of their medications. And then we tell them to come back in three months. Three months. What does that say about urgency or seriousness? It tells that we don’t really need to do anything urgently; that it’s not important.’

I gasped when he said this, because it is so true. There is no urgency in diabetes. People newly diagnosed with type 2 diabetes may still be told that they have just ‘a touch of sugar’, which sounds like something a recipe may suggest be sprinkled on top of a freshly baked streusel cake!

We have visits every three, six and often twelve months which may be fine if everything is ticking along nicely and we just need a tune up or to check in. But what about if it’s not?

And what happens when something does occur? When we have a hypo that sends us crashing, wind up in DKA after a day or two of elevated glucose levels, or are diagnosed with complications? We are blamed for not acting swiftly enough. But why would we?

Perhaps part of the issue is that we remain so reliant on A1c checks as a measure of how we are doing, and traditionally, we do these every 3 months. But the limitations of A1c should mean that we don’t rely on that and that alone.

I was thinking to a time where diabetes has felt truly urgent for me, and really, the only time I think it did was while I was pregnant. Sudden changes to patterns in glucose levels were addressed immediately. Instead, changes to therapy were swift and aggressive, and I understood that at that moment how I needed to be diligent about keeping an eye on things, reporting issues and expecting action. And my HCPs knew it too. I had far more regular appointments and at no point during planning for or during pregnancy was I sent away with an indecisive ‘We’ll just wait and see what happens and talk about it when you are in here at your next visit.

I also know that it was exhausting and draining and that maintaining that level of care is not sustainable in the long term. Burning out is a reality of that sort of scrutiny and constant focus.

But surely there is a middle ground in there where we all understand that while needing to live life alongside a condition and have it fit in with our daily lives, there is also no space for ambivalence or messaging that it doesn’t matter if we just trek along, happy with the status quo, for a few months.

I had a conversation with Stephan later, thanking him for his talk and telling him how that moment of his presentation really rang true. We spoke about how many people with diabetes would be feeling really unwell during periods where they were waiting for something to be done – changes to therapy made, introduction of new drugs… Were they just accepted to feel that way until they were helped to work out how to improve the situation?

Mostly, this resonated as another example of terrible messaging in diabetes; more missed opportunities to optimise care; another time that highlights how people with diabetes actual feel is ignored as we are forced to fit into a system that is not purpose-built for our condition.

Panel discussion at the Roche Diabetes Care Media event. Professor Stephan Jacob is far left. I’m the one who forgot the ‘white shirt/black jacket’ dress code. (Click for photo source.)

DISCLOSURE

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. As always, my agreement to attend their blogger day and participate in their media event does not include any commitment from me, or expectation from them, to write about the company, the events or their products. 

The European Association for the Study of Diabetes (EASD) Annual Meeting has been its usual busy self and I have lots to write. But today, let’s look at some pictures…

Actually, let’s just look at one.

So, allow me to share a little secret. I have found that coffee at conferences is hit and miss. But Lilly usually has the best coffee. This assertion is made after attending many conferences for a number of years…and drinking a lot of coffee. A. Lot. So on Tuesday morning, I made a bee line to the Lilly stand to grab what I assumed would be the first of many coffees for the day.

I marched with purpose to the stand. And suddenly stopped short. Because there in huge, huge writing, hanging high above where the coffee queue would be, was this:

I usually have a lot to say. But as I stared at this sign, I had no words. There was a lot of ‘Wait. What? Huh? Hang on…What does that say?’  And then ‘What the fuck were they thinking?’ But I had no thoughts that made any real sense. (And I couldn’t even blame jet lag for the inability to form a cohesive sentence – I’d been in Europe for two weeks already.)

Of course, I ignored the not-in-any-way-policed policy forbidding the taking of photos in the expo area and snapped a picture, posting it straight to Twitter. Because of course I did. (And to Facebook and Insta later on!) The response was swift, and as horrified as my own.

I have not been able to stop thinking about this sign. For the whole of the conference, every time I have wandered through the Exhibition Hall, I have tried to avoid the Lilly area (I found other places to get coffee), and yet I have not been able to escape it because it is so huge. No matter how much I try to avert my eyes, I keep catching it.

I did speak with someone about it eventually. I found someone at the stand and I asked them about their messaging. ‘There aren’t people with diabetes here,’ was the first (predictable) comment. I pointed out that wasn’t true. That just casting my eyes around the room at that particular moment in the vicinity of where we were standing, I could see half a dozen PWD that I knew, and I would assume there were others I did not.

But, I explained, that’s not the point. I know that this is a health professional conference. It is not aimed at PWD. But actually, that is irrelevant. Because the messaging and language that is used when speaking about people with diabetes should be the same as the messaging and language used when speaking to people with diabetes.

I don’t know why this is such a confusing concept to grasp. It is the same as when I hear HCPs say ‘Oh, we wouldn’t use that language/those words in front of PWD.’ Here’s an idea: Don’t use that language/those words at all!

There is a lot to be said about raising awareness of the links between diabetes and cardiovascular disease. Diabetes Australia recently had a campaign called ‘Take Diabetes 2 Heart’ doing just that by highlighting the how people with diabetes can take care of their heart health. (And I’ll remind everyone that I work for Diabetes Australia, however have not had any involvement in this project, nor have been asked to promote it.) 

But the messaging in this Lilly campaign is horrific.

I would love to know the process that occurred before this was approved. I am sure that a marketing company was contracted to do this work. Several different story board ideas would have been presented. How is it possible that as soon as this one was shown, it was not immediately shut down…with an explanation of why it is not appropriate?

I sighed as I walked away from the stand. I know that language is an issue at EASD – probably more so than at any other diabetes conference. I have come to expect that. In fact, I sent out a pre-emptive tweet the morning the conference starting, urging those speaking and writing about diabetes to be considerate in their choice of language, and linking to the Diabetes Australia Language Position Statement.

Before I sent the tweet, I hesitated, wondering if it was really necessary for me to tweet that. Clearly, it was.

This time, it was Lilly. Next time it will probably be someone else. My message to these companies is to please, please do better. Think about how this messaging would impact a person living with diabetes. Because behind those stats; behind the risk factors; behind the numbers…we are people. And we want to know how to be well; how to be healthy. Not terrified into inaction.

___________________________________

DISCLOSURE

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. As always, my agreement to attend their blogger day does not include any commitment from me, or expectation from them, to write about the company, the events or their products. 

The first day of ADC was a hectic one for me. After the busy and generally well-received DIYAPS session, I had a break for lunch and then headed back to the same room as earlier in the day to co-chair a session on co-design.

I quite loved that the idea of this session was included in the program. And even more in love with watching the room fill up as Congress attendees filed in and took their seats. The session was the brainchild of Dr Kirstie Bell, who among other things, is a huge advocate for involving PWD in the program at ADC. She absolutely slayed it with this one!

The planning for the session involved a number of people, including PWD, HCPs and researchers and the aim was to highlight examples of co-design in diabetes and healthcare to help attendees understand that this wasn’t something to be afraid of. I think that sometimes there is an idea that it is just too hard to include everyone because it will mean a lot of coordination and fingers in the pie. But we wanted to show that could be managed effectively.

Another objective was to try to explain the principles of co-design. In this case, it was to underline (and probably italicise and bold) that co-design does not mean showing a finished product to someone and asking for ‘feedback’, with a further point being made that asking for feedback shouldn’t be the aim as that is done when things are already completed. Instead ask for ‘feed in’ the whole way along the process.

If the idea of co-design had a slogan, surely it would be #NothingAboutUsWithoutUs, meaning that the ‘us’ in that phrase need to be the ones driving initiatives – and definitely not being left out. Unfortunately it does seem that in diabetes, often the ‘us’ (i.e. people actually affected by diabetes) are not included in design, instead having others make decisions about what they thinkwe need and want.

And that’s why I made a really important point – something that I frequently speak about. And that’s the reminder that when it comes to the idea of co-design, if there is no opportunity for all stakeholders engaged to influence – ESPECIALLY in the case of diabetes, PWD – then it is not true co-design.

Too often, we see examples of services, activities and programs that don’t provide PWD that opportunity to influence. When that is the case, what we have is pure tokenism. And in my mind, tokenism is even worse than not consulting at all, because it gives the illusion of co-design without the reality of it. Too frequently I hear of organisations and services saying ‘Oh – we have these policies in place’ when truthfully, they are worth little more than the paper on which they are written because PWD do not actually have real power to effect any influence.

In my experience working in diabetes organisations, one of the things that I have come to understand as being critical is support from leadership. The role I started in 17 years ago at Diabetes Victoria could have been considered tokenism (one person ‘doing type 1 diabetes’) three days per week, without any budget only grew because then-CEO, Greg Johnson, had an attitude of ‘if we’re talking about diabetes programs services and activities there better be people with diabetes in the room talking about it with us.’ For a while, the director I reported to, Dr Ralph Audhem, a GP from Melbourne, was committed to establishing a national type 1 diabetes program that was fully staffed by people affected by people affected by diabetes.

Both were willing to grow the program through resourcing (both staff and funding), but most importantly, by listening to people with diabetes – and not just those from within the organisation – and including them in every single step of the way.

Perhaps, my most favourite example of co-design recently is the Mytonomy diabetes language matters video. Deb Greenwood in overseeing the development of the video consulted with all stakeholders, firstly to help write the script that would be used. It was honed and finetuned by repeatedly asking people to feed into what others were saying. Instead of using actors to deliver the message, Deb engaged PWD, healthcare professionals and researchers. The result is something that not only hits the mark when it comes to its messaging, but it feels wonderfully authentic and real. No wonder people have been sharing it far and wide.

I was thrilled to be able to show it as part of the introduction to the co-design symposium at ADC, and then Jane Speight shared it again the following day during her ADEA Plenary talk. (I would really encourage ANYONE involved in putting together a diabetes conference or event to find a way to fit this three minute video into the agenda! It resonates with all involved in diabetes.)

The other speakers in the symposium all shared their own examples of where the principles of co-design had been applied with great success. Melinda Seed spoke about the Type 1 Network and how that grew from a gap of providing support and information for young adults with diabetes; Frank Sita shared his experiences of being on the Perth Diabetes Care Young Adults with Diabetes Committee and Melinda Morrison provided an overview of stakeholder involvement and engagement in the NDSS Diabetes and Pregnancy priority area.

These real-life examples provided attendees with an understanding of how they too could incorporate the idea and principles of co-design in their own work – which is exactly what we hoped to achieve when designing (co-designing!!!) the session. And it seems that just maybe, we got through to some people. I’ll finish this post with this tweet from credentialled diabetes educator and midwife, Belinda Moore:

Sometime last week, I marked a year since I started using Loop. Measure for measure my diabetes is a lot nicer to deal with these days and I know that I have settled into the comfort that comes with something that just seems to be working. The predictability of loop seems to fly in the face of all that is diabetes, so I do admit to not getting too comfortable with it all – even after fifty-two weeks of seemingly boring diabetes.

This was startlingly obvious to me when I reflect on my last two very busy weeks. As I ran around the Adelaide Convention Centre last week, not once did I think about Conference Hypo Syndrome. As I flew from Melbourne to Sydney to Adelaide and back home to Melbourne, I didn’t think, even for a moment, about travel lows and highs. And throughout the busy days, and the long busy nights of the two weeks – which involved hours sitting still in sessions and meetings as well as times of a lot more activity – apart from a cursory glance at my Loop app, diabetes didn’t bother me.)

It has been almost 12 months since I first spoke about Loop at a health professional conference, and it’s fair to say that I am still slightly traumatised by the memory of that session. I know that for the vast majority of the people in the room on that rainy day in Sydney, most had never even heard of the world of DIY diabetes, and the idea that a forty-something-year old woman with diabetes was standing before them talking about how I’d built my own pancreas was more than a little terrifying. And they let me know about it.

There was disbelief, horror and alarm that I was telling my story. I repeatedly heard people tell me that this was irresponsible and unsafe. And a number of HCPs were shocked, worried and appalled that the instructions for others to do what I had done were freely, easily and openly available online. (My cheeriness about open source wasn’t mirrored by most at ADATS.)

I’m pleased to say that wasn’t the response last week, during or following the DIYAPS symposium ‘The Brave New World of Diabetes Technology’, which featured me sharing about my own personal experience of why I decided to, and my first year of Loop; David Burren speaking about the technical aspects of the DIY technologies, and Cheryl Steele encouraging HCPs to support people using these technologies. The formal presentations were rounded out with Greg Johnson launching the Diabetes Australia DIY Technologies Position Statement.

It was standing room only, and great (and surprising) to see a number of endocrinologists in an ADEA symposium. We deliberately programmed the session to have a lot of time for questions, because we knew there would be lots! And there were.

There were a number of questions from the audience about what the role of HCPs is if someone comes to them and says they are, or they want to start, looping, and I think the consensus is that while we don’t necessarily need our HCPs to understand the intricacies of the specific technologies, and we are very clear that we don’t want, expect or need them to be able to help us build our loop, we need them to acknowledge that DIYAPS is a reality for more and more people with diabetes.

The overall feeling in throughout and following our symposium was of interest and curiosity. But even more, a desire to truly learn and understand more about the #WeAreNotWaiting world and where HCPs fit into it all, and how they can support those of us making the choice to loop.

The shift in the attitudes of health professionals is significant and important, and it extends far beyond DIY diabetes technologies. Because it all comes back to the whole idea of choice. There will never be only one right way for all people with diabetes. It doesn’t matter if we are talking about the foods we choose to eat, the technologies we choose to use, where we decide to see how HCPs, our decision to wait or not wait, or the support and services we choose to link in with. We need to have the space to do what is best for our diabetes. We need the freedom to make the choice. And we need our HCPs to support our decisions.

I have already shared this, but in case you missed it, the three presentations from our symposium can be watched here:

DISCLOSURES

My travel and accommodation to ADC was funded as part of my role at Diabetes Australia. Thanks to the ADS and ADEA for providing me with a media pass to attend the Congress. 

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