Diabetogenic

Diabetes Scrabble

October 31, 2018 in Diabetes, Real life | Leave a comment

The kid and I have been enjoying some fierce Scrabble battles. At this stage, I am absolutely owning it, and, as a mother who has always subscribed to the tough love approach to parenting, I’m not going easy on her in any way. Plus, I like winning.

I’ve always loved Scrabble. I love the empty board at the beginning and the possibilities of what is about to be laid down. I love turning over the first seven letters and arranging them on the wooden stand, wondering if there is any chance of finding a word that will use them all up as my first turn. I look ahead and try to strategise so that I manage to get the most double and triple world scores. And I play to win. Did I mention that already?

As the board fills up, and letters form different words, I hope for an open board with lots of options to use the letters already in play. I move the tiles around on the stand trying out different arrangements, searching for uncommon words that the kid may never have come across, (because why not use this is a teaching moment?!).

When our game finished the other night, I looked at the words and smiled at the randomness of it all. How did those words all come together; how was that pattern the end result? It was an exercise in haphazardness and chance and, sometimes, a bit of luck.

Just like my twenty years of diabetes. There is no rhyme or reason to most of it; nothing really happened by design. There was (and continues to be) a lot of trial and error. I stumbled on things and added to what I was doing to see if it made anything better. Sometimes, I jackpotted on the equivalent of a triple word score with a J in play. Other times, I called it a day, throwing everything back into the box and starting again. There were times that I looked at what was in front of me and somehow cobbled together something that seemed to work.

If I were to make a Scrabble board of words relevant to my life with diabetes now it would use different words today than when I was first diagnosed, or after five years of living with diabetes, or ten, or fifteen.

Twenty years ago, the words would have been about uncertainty, following what I was told and naivety. There would have been words reflecting the management tools I was first given, and they would have been very different five years later, when ‘pump’ would have replaced ‘pens’ or ‘injections’. Some cynicism and sass would have started to make its way in. Another five years later it would have all been different again, my bolshy attitudes much clearer and on show. Fifteen years of living with diabetes would have seen more technology, words showing how my world had been opened up thanks to online diabetes support networks and more travelling. These days, there would be words like ‘Loop’. And ‘tribe’ to acknowledge those friends with diabetes who have come to be an integral part my story.

There would be words that may be denied in regular Scrabble, but the diabetes version would absolutely approve of words and abbreviations such as DIYAPS, diaversary, Kellion, RileyLink and YDMV.

But undoubtedly, throughout it all, there would be some words that would be played all the time in each game. Words such as fear, anxiety, frustration. And hope. Hope would always be on the board, the first word played at every opportunity. Because it’s always been with me. It’s the thread that has been woven through and held together every part of my diabetes, from that first day to today and every single day in between.

Researchers + PWD at #EASD2018

October 29, 2018 in Awareness, Complications, Conferences, Diabetes, DOC, Engagement, Language | Leave a comment

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.

The need to be heard

October 26, 2018 in Awareness, Communication, Language, Real life, Social media | 3 comments

Trending on Twitter at the moment is a hashtag that is getting a lot of attention (obviously: it’s trending).

The hashtag is #DoctorsAreDickheads.

Has it got people’s attention? Yep.

Is it inflammatory? You bet.

And it needs to be.

The shitty thing is that sometimes it takes a loud, brash moment like this for people to sit up and listen. Lousy experiences in healthcare are not isolated experiences. Not being listened to; not being believed; being dismissed; being belittled; experiencing doctor bias – these are all real. These happen frequently.

In diabetes, we hear this from the point of (mis)diagnosis right through to people who have lived with diabetes for decades. How many people were sent away from the doctor being told their symptoms where nothing? How many parents were told they were over-reacting when they repeatedly took their thirsty, constantly peeing, losing weight child to the GP? How many of us are blamed instead of helped when we start to develop complications? Almost every single person with diabetes I have spoken has a terrible tale to share.

Hashtags like this, which often then become ‘movements’, come about for one simple reason: people are hurting and need to be heard. They don’t happen because an individual has a grudge directed at one other person. They happen, and become magnified, because there is clearly a systematic issue somewhere. One single person may start the discussion, but others see their own experiences reflected in what others are saying and join in the discussion.

Also, hashtags like this don’t happen as a first line of attack. Often, people have tried every other angle: they have tried to reason, asked to be heard, searched for someone they hope will be more sympathetic, used the system in place – the system that is meant to protect them, followed protocols for making complaints when things go wrong, written quiet pieces on their own blogs or in closed community groups in a hope that someone – anyone – will listen. They have tried being polite, quiet, compliant.

Yet they don’t feel heard.

Unsurprisingly, there have been parallels drawn between #DoctorsAreDickheads and #MeToo and #BlackLivesMatter. And in exactly as the response to #MeToo became #NotAllMen, and #BlackLivesMatter became #AllLivesMatter, predictably we are seeing #NotAllDoctors.

Suddenly the reason behind the discussion is hijacked. Doctors become defensive; others jump to their defence. And the stories of those who have been hurt, who continue to be hurt, who have sometimes had their lives turned on their head, start to get lost.

The right response to this hashtag is to listen. It is not to turn it around and defend yourself or start to attack those who are sharing their personal stories. It is not to be self-justifying. It is not protect your own interests. It is not to accuse the people sharing their stories as being aggressive, nasty, offensive, attention-seeking or confrontational.

It is to stay silent and listen. It’s to let the discomfort wash over you, surround you, move in and almost suffocate you while you remain quiet and listen.

Listen to the people who have had these horrible experiences. Recognise there is a power imbalance between medical care givers and receivers. Understand how vulnerable some people are when they are sharing their stories – and how vulnerable they were when they were let down by their doctors. And accept that the anger on show is completely and utterly understandable.

Personally, I have had some horrid experiences with doctors. Of course I’ve had some incredibly positive and empowering experiences. I have nothing but the highest regard for my own healthcare team and so many of the HCPs I am lucky to work with as part of my job. I named my kid after my endo because I honestly think that her care and expertise and compassion are part of the reason that I have an amazing teenager accompanying me in my life these days. But this isn’t about celebrating those moments.

It’s about the ones that left me feeling hopeless.

Some I’ve documented on my blog, others I feel I am still too traumatised to talk about. I have felt belittled, delegitimised, stigmatised and made to feel like a fool, a hypochondriac, a trouble maker, an attention seeker by doctors in the past. And I am a confident, educated, Bolshy advocate who understands the system. Imagine for a moment those who don’t, because we’re not hearing from them. Yet.

For every single person using the #DoctorsAreDickheads hashtag on twitter as they share their experience, there are dozens who are not doing that. It is not a loud minority who are being rabble-rousers. What we have seen in the last day or so is just the start.

Could it have been more nuanced? Maybe. Someone suggested that a better option would have been #DoctorsBeBetter, but I guarantee that those who are up in arms about this hashtag would still be crying #NotAllDoctors even if there wasn’t the profanity contained within the current hashtag.

And finally, I have a plea here. Please, do not invoke the #LanguageMatters movement as part of this discussion. Language matters – at least the way that I see it and have been working at for almost a decade now – is about ensuring that the language used when speaking to and about people with diabetes empowers and supports us.

If we want to add a language focus to this discussion it’s this: stop policing the language that ‘patients’ use. In the same way it’s not up to healthcare professionals to tell people with diabetes the language to use when speaking about our own diabetes, it is not for the medical community to tell the ‘patient’ community to tone it down or use different words when we are telling our own stories. We will use the words that resonate with us, within us, amongst us. Because these are our stories. And it’s time, and we deserve, for them – for us – to be heard.

Diabetes in schools – you have a chance to say something NOW

October 25, 2018 in Diabetes, Engagement | Leave a comment

I’ve been working in diabetes organisations for over seventeen years now. When I look back over that time, there are some issues that have been consistent ‘hot topics’.

One of those issues is diabetes in schools.

I have been involved in a number of projects addressing diabetes in schools, starting with the beautiful documentary-like video ‘Diabetes Basics’, and the adaptation of the excellent Diabetes UK schools packs for families of children with diabetes and their schools, firstly in Victoria, and then the subsequent national roll out of this resource. It is called Mastering Diabetes and it still is used today.

It is easy to understand why diabetes and schools is such an important issue. Ensuring that children with diabetes feel safe at school, are able to manage their diabetes in the way that works for them, and are able to fully participate in all school activities is critically important. There is obviously – and necessarily – a lot of emotion tied up in the matter.

But what I have come to know is that, by and large, everyone involved – parents, teachers and school staff – want children and teens with diabetes to be safe in schools and participate in all school and extra-curricular activities just as any other student would. There just seems to be a lot of confusion about rights and responsibilities, which is often the case when there are a number of stakeholders involved.

So, it was great when, just last month, the Federal Government announced six million dollars in funding for a new program to make it easier for teachers to support school children with diabetes, and give parents some peace of mind, knowing that their children will be safe at school.

It will be the first time that Australia has a nationally consistent training program delivered to teachers and school staff at every school with students with type 1 diabetes. The program will cover, (amongst other things), safe administration of insulin, hypo management, and reducing diabetes-related stigma.

This is good news. Great news!

The program is still in development stage and a key part of putting it together is making sure that all involved have a chance to provide input. One of the things I have heard repeatedly over the years from parents is that they feel that they are often left out of conversations about how to best support their child at school.

Parents: now is your chance!

There are workshops being held across the country for parents of primary and secondary aged children. There is also an online consultation for parents here.

Teachers and school staff are also part of this development phase and there are separate workshops being held for this group as well. And there is also an online consultation for for teachers and school staff here.

Now is the time to have your say.

Disappointingly, numbers for workshops has been extraordinarily low – some sessions have had to be cancelled due to low numbers. Considering the constant criticisms I have heard in the past about parents being excluded from discussions about diabetes and schools programs, I’m a little flabbergasted that this is the case.

At the risk of sounding slightly bossy and harrying, I am urging parents of school aged children to please get involved and help shape this important program. You need to show up. You need to register and attend the workshops. And you need to complete the online consultation.

All the details are here. Share them amongst your networks. Encourage parents and teachers of kids with diabetes to have their say. Everyone – everyone!– wants kids with diabetes to feel safe and supported in schools. Help make that happen.

The Diabetes in Schools program is being funded by the Federal Government and will be delivered through the National Diabetes Services Scheme (NDSS). The program is supported by the key national diabetes health professional and consumer organisations in Australia: Diabetes Australia, the Australian Diabetes Educators Association, the Australian Diabetes Society , the Australasian Paediatric Endocrine Group and JDRF Australia.

I work for Diabetes Australia. I have not been asked to write about this program, however as I am always banging the drum about consumer consultation, it more than makes sense that I am encouraging – and pleading – relevant stakeholders to take the opportunity to be a part of the program consultation.

Almost wordless Wednesday – Old school

October 24, 2018 in Diabetes, Real life | 1 comment

I may use the latest and greatest in diabetes tech, built my own pancreas, become completely reliant on automated insulin delivery, wear devices that send, read and respond to data 24/7. I can set reminders and alerts and alarms and all the fanciest of fancy bells and whistles to help remind me to do diabetes.

But sometimes, the best way is totally old school!

The weight

October 23, 2018 in Diabetes, Family, Real life | 5 comments

‘When I hear from and read about you and other adults like you with diabetes, you make me think everything will be okay.’

This comment was made to me recently – and not for the first time. I have heard this more times than I care to remember (directed to me as well as to others with diabetes) from others (often newly diagnosed) with diabetes, as well as loved ones of people with diabetes.

While I believe that it is often said as something that is meant to be complimentary, it has become one of the comments I absolutely dread hearing. It’s not a new thing – I have heard people say things like this and similar for as long as I have had diabetes. And I know that I have, in the past, said things like this too – especially around Kellion medal time each year when I get to meet with PWD who have lived with diabetes for far more years than me.

But in recent times, I have stopped saying it, following a conversation with someone who received a Kellion medal this year and read my post about the ceremony. ‘I have nothing to teach you,’ they said to me, as we were chatting. ‘All I do is live with diabetes. I don’t have a choice. It’s not remarkable. It’s just my life. And I get annoyed at people who want to give me a medal for simply living with diabetes.’ We both then giggled at their choice of words because we were, of course, actually speaking about (Kellion) medals, but I think I understood what they were saying.

And it got me thinking to how we speak about others living with diabetes and other health conditions, and what we are saying when we start to use words like ‘inspirational’, ‘brave’, ‘amazing’, ‘incredible’, ‘magical’, ‘motivating’, ‘heroic’ and all the other syrupy superlatives you can imagine.

I have used every single one of those words at some point when talking about other PWD. And people have used these words when talking about me, and I can tell you all I feel is uncomfortable and like an absolute fraud. I’m none of those things. I’m a bumbling mess most days. So it doesn’t sit well at all if the only reason that someone is using hyperboles to describe me is because of diabetes.

And then when someone goes a step further and starts to say a PWD make them feel better about themselves, their situation, or their (or their kid’s) future, that’s just placing a whole lot more expectations on the shoulders of that person with PWD. Or, when someone says that they want to learn from us, suddenly on top of everything else, we also have to be teachers? More weight on an already extremely heavy situation.

Of course, there is a darker side to this. Not always are we seen as beacons of inspiration. In fact, sometimes, people want to hold us up as examples of ‘what not to do’. I cringe every time I hear the suggestion that newly diagnosed PWD should meet someone with diabetes-related complications as a warning of what can go wrong. Absolutely no better is the idea that rather than underlining diabetes-complications as a threat, it’s a good idea to look at PWD living with complications as examples of proof that life goes. I’m pretty sure that’s not what anyone is thinking when they get up in the morning and go about living their life with that complication.

Suddenly, alongside the responsibility of doing diabetes and all that comes with it, (complications or no complications) we are also now responsible for making others feel better and more knowledgeable about their own situation? That just seems like another task to add to the endless demands diabetes already places on us.

And it also seems a little unfair.

It’s true – there are days that some of us may be brave; we may be seen as inspiring; we may amaze you. Some days it may even be me who seems to be some of those things. But not if the only reason you see us like that is because we are living with diabetes. Last Friday the fact that I got up and out the door and to the airport before 6am in matching shoes, stockings, lipstick within my lip line, and a pencil dress that wasn’t wrinkled is actually quite remarkable, and I would be grateful for someone to acknowledge that. Oh, and a couple of weeks ago, there was a spider the size of a saucer on the ceiling of our bedroom and I more than capably dealt with it. You may call me brave for that, because: Australian wildlife. But nothing to do with diabetes.

We are people with diabetes and we do what we can to manage that however possible. We are not here to make other people feel better about their own lives, or allay concerns they have about their loved ones with diabetes. We’re not here to be a teaching moment. An equally, we’re not here to be a cautionary tale. We are just here to muddle through with the lives we have; lives that contain diabetes.

I have always loved this song.

Automated insulin delivery at #ADATS18

October 22, 2018 in Devices, Diabetes, Pumps, Research | 2 comments

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.

Interweb jumble #32

October 19, 2018 in Awareness, Communication, Complications, Conferences, Diabetes, Health, Interweb Jumble, Language, Mental health, Real life, Research | Leave a comment

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.

An incomplete picture

October 17, 2018 in Conferences, Diabetes, Engagement, Health, Real life, Wellbeing | Leave a comment

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.

Solid 3.5

October 16, 2018 in Complications, Devices, Diabetes, Health, Real life, Wellbeing | 1 comment

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.