ADATS on Friday was a great day of diabetes technology and treatment advancements.

There was a lot about automated insulin delivery (AID) systems, which, when you think about it, is really what is at the cutting edge of available diabetes therapies in 2018. David Burren, the Bionic Wookiee, gave a keynote on his experience using DIYAPS and why it works for him. And smart endocrinologist Dr Barbora Paldus gave what I heard was a fabulous talk about different AID systems, including what is coming onto the commercial market as well as DIY systems, and providing details (using terminology that made sense to everyone!) about the different algorithms. And fuzzy logic. I’m so annoyed I missed her talk, but it was on at the same time as the session I was chairing (and it’s bad form for the chair to leave the room to go to hear other speakers).

Before going any further, let me say this – not as an statement of tokenism, but as absolutely heartfelt and something I believe one hundred percent. We can talk about systems that automate insulin delivery with the aim to improve diabetes outcomes, but until these are affordable, accessible and available for everyone who wants to use them, we must acknowledge that these technologies will not be able to be used by most people with diabetes. Everyone ‘working in diabetes’ has an obligation to work towards improving access and affordability to minimise the ‘haves’ and ‘haves not’ landscape that we are already seeing, and will see even more in the future.

I chaired a session that focused on the current MiniMed 670G system trials underway in Australia and then hijacked the panel discussion in the afternoon about the topic because the consumer rep. had to leave early. So, where are we with approval for this system (and how long before lucky people can get their hands on one)? Well, the pump is now approved through the TGA, however is not being provided to PWD yet. The new sensor has not received approval yet, and the system as a whole has not either. Medtronic Australia is saying that they are hoping it will be available by the end of the year. The approval process is out of their hands, but I know they are working super hard on their end to get this to PWD as soon as they can.

I have spoken with a few people who have done the trial here in Australia. We need to remember that trial conditions are often not ‘real life’ conditions, so what I am writing about today does not necessarily reflect the experiences of people using the 670G every day and outside of trial conditions. (The system has been launched in the US and there are lots of stories online from people who have chosen to use this system and I would encourage anyone thinking about using it to search for and find what they have to say.)

Research guinea pig and 670G study participant, Leanne Foster.

The session last Friday was comprehensive in that it included presentations from HCPs in the private and public sectors, adult and paediatric settings, a dietitian, and (thankfully) a psychologist. For me, the highlight was hearing from self-proclaimed research guinea pig, (and friend for over fifteen years) Leanne Foster, who has been a long time diabetes technology study participant and was involved in the study.

From listening to the details of the study design, this was not trial for the fainthearted! There were significant demands placed on participants, and expectations were high. To be clear, participants were not given the system, provided with a bit of training and sent on their merry way to simply live alongside the device back in their everyday world. There was a lot of logging, counting, device wearing (not just the pump and CGM that make up the 670G system).

I think it is important to mention this, because one of the themes that was repeated by several speakers was that for many participants, their own burden of diabetes – how much they thought about their diabetes and what they were required to do – increased while using the system on the trial.

It is also important to mention that this is a first generation device. The system that will be launched here is likely to be the same as the one in the US, yet there have already been more sophisticated and aggressive algorithms developed and tested as part of this trial.

While possibly unfair, it is impossible to not compare experiences of people using the 670G and DIYAPS, because these systems are endeavouring to do the same thing: automate insulin delivery, increase TIR, reduce what the PWD is required to do.

And there were some things that struck me as really widening the gap between the two systems.

Firstly, the concept of added burden was astounding as my personal diabetes burden is the lowest it has ever been in the twenty years I’ve lived with diabetes. Since Looping, I think about diabetes far less than I did beforehand.

That burden is not only applicable to PWD. Many of the HCPs who presented said that they found themselves required out of hours significantly more with people using the 670G. I have not once called my HPC about any diabetes-related matter in the last 15 months I’ve been Looping. Obviously, I wouldn’t be contacting her if there was an issue with the system, but I’ve not contacted her for any general diabetes trouble-shooting that would result in me making changes to any of the settings on my tech.

There was a lot of talk about the 670G system ‘booting out’ of auto mode, meaning that automated insulin deliver doses stop, instead going back to the fixed basal rates set in the pump. This happened every day for many people; several times and for a number of hours at a time. I can say that in my experience, my system loops continuously. There are extremely rare times where my green circle turns red, and the pump reverts back to delivering what is set as my basals. But I am always able to troubleshoot by following a few basic steps and Loop will inevitably return to green.

One thing that struck me, was the number of times we heard about the system struggling to cope with the day-to-day lives of the trial participants, and the only way around that was for them to amend their behaviour. There was one moment that had me sitting there in disbelief when I heard the example of one trial participant who was having recurrent lows overnight and the only way to remedy that was for them to have 10g of carbs before bed. Suddenly, I was thrown back to 1998, being on Protophane and Act Rapid, and the only way I could keep horrid night-time lows at bay was to have a glass of milk with corn powder before bed. (Anyone else do that?)

The very idea that new devices being developed will require PWD to change their behaviour for said device to ‘cope’ with our real life is astonishing! This is, without a doubt, a step backwards in my mind. I know that my experience of Loop is that it has easily been able to adapt to my incredibly un-predictable life that includes far too much travel to different time zones, a varied and sometimes erratic diet and days where I have walked 30,000 steps with others where I’ve been horizontal for most of the day. I haven’t had to modify my behaviour in any way to please my Loop, and I’m not sure I would be so enamoured by it if I did.

What is definitely not a step backwards however – in fact it’s a monumental leap forward – is the potential of this technology and technology like it. As a convert of automated insulin delivery systems, the idea that people will be able to soon access devices that commercially available, under warranty and supported by the company’s customer service is only a great thing. Not everyone wants to build their own system, not everyone is comfortable using a DIY system, especially if they don’t feel they have complete support of their HCPs. Once the 670G becomes available, many of the concerns PWD have will be alleviated. Adding choice is only ever a good thing.

But perhaps the most telling sentiment about how the technology impacts on real life came from Leanne. She loved the idea and experience of automated so much (even with all the disclaimers of the trial requirements) that when she was forced to hand back the 670G system when she finished her part of the trial, she as having none of it! After begging to keep hold of the system (which she knew simply could not happen), she had everything ready to go to build her own DIYAPS and has happily joined the Loop family for now. The capabilities of the 670G technology – the automation and the results – such as the improved sleep – were too much of a good thing and she was not prepared to go back to what she had beforehand. And THAT is telling.

Automated insulin delivery panel. L-R: David O’Neal, Sue Wyatt, Kerryn Roem; Jane Speight, Tim Jones, Spiros Fourlanos, me, Jane Holmes-Walker, Melinda Mus

Disclosure

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

I am not involved in the Medtronic MiniMed 670G trial. I have worked with and consulted for Medtronic on other projects.

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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.

I’ve been thinking a lot about motivation recently; specifically, how we remain motivated living with a lifelong health condition that places so many demands upon us. It’s something I also get asked about a lot by others with diabetes – often people newly diagnosed: ‘How do you stay so motivated.’

It’s all smoke and mirrors, because the truth of the matter is that most days, my motivation to ‘do diabetes’ is very low. In fact, I think that there is a spectrum of motivation where zero is ‘What diabetes?’ and ten is ‘I log everything…EVERYTHING…ask me how many carbs I ate yesterday and what my BGL was at 3.10pm and 5.55pm. Go on…do it. Because I can tell you. Do it. Ask me. And also, yes! I can tell you why my glucose levels spiked at 10.12am three months ago on a random Tuesday. Also, look at this: it shows how my glucose levels are impacted by the phases of the moon. In other news…here’s my last fifteen years of A1cs displayed pictorially, but I can also demonstrate them using interpretative dance if you would like me to. Would you? You would, right? Let me just find my Kate Bush playlist on my iPhone…

Generally, I’m a solid 3.5. I don’t do graphs, I have a vague idea of what my CGM is telling me now-ish, and I can tell you my A1c to within about 0.5 per cent. I call this winning.

I have had periods – extended periods – where I am far closer to zero, which have not been great because that has added ‘not-doing-diabetes-guilt’ to the simple ‘not-doing-diabetes’ which basically equalled feeling crappy all around. And I’ve also been closer to ten – this, for me, was called ‘pregnancy’ – and I was borderline obsessive.

Someone recently asked me if I thought there was a secret to staying motivated. I don’t think there is, because surely, at least one oversharing blogger would have written about it by now.

But I do believe there are small factors that, when combined, do make it easier to remain, if not enthused, at least stirred to keep chugging along with diabetes.

Firstly, in range numbers beget in range numbers, and in range numbers make us want to check for more in range numbers more frequently. It’s undeniable that when we see numbers that don’t cause the response of rage, frustration, sadness, stress or anxiety, we are more inclined to check again. And again.

Technology that helps rather than hinders makes everyone feel better. Many think that it’s a given that new tech makes life easier, but unfortunately, that’s not always the truth, because often – at least to begin with – it requires more input from the user. Actually needing to do more, but not necessarily seeing results is not a recipe for remaining enthused!

Boring tasks are boring, so any way that we can eliminate them or reduce them helps. Making appointments to see our HCPs, finding time to visit a pathology centre for quarterly A1cs (and more) and keeping our diabetes supplies and meds current all take physical time as well as mental time. I have a pharmacist who is like my personal assistant when it comes to reminding me that it’s probably time to reorder insulin and NDSS products and prompts me when I need a new insulin prescription and I cannot tell you how much I love her. She sends me texts messages (totally unobtrusive) and I reply by text and then a day or two later pop in and she has everything ready for me. I can’t remember the last time I ran out of something, thanks to Mae!

But for me, if there was a silver bullet, it would be this: I am motivated because of today. Today, I have been able to do everything I have wanted to do and diabetes has not stopped me, even momentarily. And that makes me want to do it more.

I know that a large part of that is that I have the capacity, the will and the ability to do what I need to make this happen. I speak from a position of privilege, because I also know that the devices I am using – and am able to afford to use – certainly do help me with everything. They have helped to make my diabetes today doable, manageable, and as untroublesome as diabetes can be.

You can threaten me with what is going to happen in five, ten, twenty years’ time; you can tell me about all the disabling and debilitating complications that will happen if I don’t remain motivated and how they will impact on my life as a fifty, sixty and seventy year old.

But unless what you are saying is going to impact on me right here, right now, I can ignore it, and I can ignore the things that may help me reduce the risk of those things happening.

Perhaps that’s where public health messages about diabetes get it wrong. They tend to focus on longer term impacts. It’s not just teenagers who believe they are invincible. Despite a body that each and every day looks less like that of a sprightly youth, I think I am still young. I think all the things that are considered long-term issues are still years off. Being unmotivated doesn’t seem to matter when I don’t need to deal with those issues today.

But when diabetes does impact on my day now, then I notice. More hypos, more hypers, more interrupted sleep, more roller coaster numbers, more exhaustion, more feeling crappy. All of these things make day to day life more difficult. And I want to avoid them as much as I can.

I’m quite pleased with my solid 3.5. Sure, it could be better. Sure I could do more. But it’s consistent. And it’s achievable. Plus, quite frankly, everyone around me should be pleased with the absence of interpretive dance.

Click to get your own Casualty Girl bag.

#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. 

Grumps in Australia last month. (He’s on the left.)

In a former life, I was a music teacher. It was always very clear to me that there was no one way to teach that worked for all kids, and there was a need to somehow tailor my teaching style to meet the kid standing in front of me.  

A common cry in diabetes is that no one size fits all when it comes to diabetes management or treatment plans. Surely, that same idea extends to diabetes education.

Today, Grumps is back at Diabetogenic with his next #WWGD post, (which is good because I am far too busy eating my way around Italy). He’s talking about learning styles when it comes to diabetes, and what works for him.

Take it away, Grumps. (I’ll just go back to slurping through this lemon granita…)

______________________________________

Since being diagnosed back in the dark ages, when there was no internet and my BG check was called a ‘BM test’, I have had to learn medical stuff.

I’m OK with that.

I mean really OK.

I just see my body as the vehicle that I have in order to drive my way through life, to get to the places that I want to be. As I get older this vehicle that I live in gets a bit more banged up. Bits of it get damaged or fail. Hopefully my gear stick never falls off…

I do, of course, have the luxury of age. Diagnosed at the age of twenty-five, it was easy for me to accept immediately, and I just needed to know what manual things I needed to do to compensate for the glitch in my engine management system.

Queue the learning of medical stuff. Constant learning of some quite complicated and detailed stuff.

So, this is where my issues lie. I’m no great student. I have the attention span of a…

I don’t learn well by reading, or listening so if you want me to learn that way, then keep it brief and use simple and short words.

Ah…

That’s not really how medical stuff is written, now is it?

Over the years, I’ve learned a lot about my diabetes, with most of that learning in the latter years with the advent of the internet, social media and good old You Tube. As a visual learner, these have really helped.

Now, these days I’ve had to learn more medical stuff. Different stuff. All about my foot and associated diabetes-related complications, (I know, I don’t mention it often…), and the other day I got the results sent through of my latest MRI scan, packed with medical stuff…

Errrrmm. What?

Faced with all these words and terms… (I know, it’s taken a while to get to this right?)… ‘What Would Grumpy Do?’ (#WWGD)

In a word. Pictures!

A bit of Googling, a bit of fiddling and it all starts to make sense to me.

I sent it to my podiatry team. They liked it and are considering adopting it as an idea for explaining foot issue to the people that are living with them.

I have learnt over time that this is the best way for me to understand all of this medical stuff, which means that I can do what I need to keep this vintage vehicle on the road.

Maybe a person’s learning style should be assessed and understood at diagnosis in order to ensure that all of the information that we need to absorb is given to us in the way we need it to be?

Our diabetes may vary. So does the way we learn.

Live Long and Bolus!

Grumps

You can get more from The Grumpy Pumper by checking out his blog here. And following him on Twitter here

So, I’m here:

And I’m spending my time doing this:

And sometimes this:

Oh, and eating these:

And lunching on things like this:

And cleaning plates like this:

I’m also doing a lot of this:

So you might expect there would be a lot of this:

But there’s not.

Because along for the trip is Loop, and as soon as we start our days, I hit the workout glucose target (which is set to 7.0mmol/l instead of 5.0mmol/l) and that has been pretty much taking care of things.

I have these in my bag (because: back up plan) and have needed a couple of them now and then.

But really, diabetes has been pretty boring. Which is great. Because Rome is anything but boring, and not having to deal with constant lows means that I get to just keep doing this sort of thing:

I am having a family holiday for a couple of weeks before heading to EASD in Berlin, so I may be a little quiet around here until I get to the conference. Our days are long and lazy and I am trying to not open my computer all that much. (I’m also really bad at being on holidays (the 1am teleconference last night is a good example of that!), but I really am going to try my best to take some real time away. 

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