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I get to meet some pretty awesome people with diabetes around the globe. At EASD I caught up with Cathy Van de Moortele who has lived with diabetes for fifteen years. She lives in Belgium and, according to her Instagram feed, spends a lot of time baking and cooking. Her photos of her culinary creations look straight out of a cookbook…She really should write one!

Cathy and I were messaging last week and she told me about an awful experience she had when she was in hospital recently. While she wasn’t the target of the unpleasantness, she took it upon herself to stand up to the hospital staff, in the hope that other people would not need to go through the same thing. She has kindly written it out for me to share here. Thanks, Cathy!

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‘Good day sir. Unfortunately we were not able to save your toes. There’s no need to worry though. We’ll bring you back into surgery tomorrow and we’ll amputate your foot. It won’t bother you much. We’ll put some sort of prosthetic in your shoe and you’ll barely notice…’

I’m shocked. Still waking up from my own surgery, I’m in the recovery room. Between myself and my neighbour, there’s no more than a curtain on a rail separating us. I feel his pain and anxiety. He is just waking up from a surgery that couldn’t save his toes. This man, who is facing surgery again, leaving him without his foot. How is he gonna get through this day? How will he have to go on?

The nurse besides my bed, is prepping me to go back to my room. I tell him I’m shocked. He doesn’t understand. I ask him if he didn’t hear the conversation? His reaction makes me burst into tears.

‘Oh well, it’s probably one of those type 2 diabetics, who could not care less about taking care of himself.’

I’m angry, disappointed, sad and confounded. I ask him if he knows this person. Does he know his background? Did this man get the education he deserves and does he have a doctor who has the best interest in his patient? Is he being provided with the right medication? Did he have bad luck? Does he, as a nurse, have any idea how hard diabetes is?

The nurse can tell I’m angry. He takes me upstairs in silence. My eyes are wet with tears and I can only feel for this man and for anyone who is facing prejudice day in day out. I’m afraid to face him when we pass his bed. All I can see is the white sheet over his feet. Over his foot, without toes. Over his foot, that will no longer be there tomorrow. I want to wish him all the best, but no words can express how I feel.

What am I supposed to do about this? Not care? Where did respect go? How is this even possible? Why do we accept this as normal? Have we become immune for other people’s misery?

I file a complaint against the policy of this hospital. A meeting is scheduled. They don’t understand how I feel about the lack of respect for this patient. They tell me to shake if off. Am I even sure this patient overheard the conversation? Well, I heard it… it was disrespectful and totally unacceptable.

Medical staff need to get the opportunity to vent, I totally agree. They have a hard job and they face misery and pain on a daily basis. They take care of their patients and do whatever is in their power to assist when needed. They need a way to vent in order to go home and relax. I get that. This was not the right place. It was wrong and it still is wrong. This is NOT OKAY!

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Yesterday, I woke to the news that the American Diabetes Association – American Association of Diabetes Educators guidance paper on language had been published.

You can read the article here, and then check out this awesome two-pager that has been developed as a quick guide for anyone working with people with diabetes.

I love the four core principles that guided this work. How wonderful it would be if these principles were at the front of everyone’s mind anytime they were speaking about diabetes or to people with diabetes!

But that wasn’t the only exciting piece of #LanguageMatters to hit the interwebs yesterday.

#LanguageMatters superstar, Professor Jane Speight co-authored (with Professor Richard Holt) this editorial about the language of diabetes for Diabetic Medicine. (And yes, the irony of this piece being published in a journal with that name is not lost on me…)

We’re not done yet – there is still much to do. But I do think we are heading in the right direction and there certainly is evidence that the message is getting through.

I’m an invited speaker at a diabetes meeting tomorrow and as part of my speaker information pack, I was sent a link to the Diabetes Australia Language Position Statement, with instructions to use it as a guide for the language I use in my talk.

And the organising team of the Roche Educators Day back in August did the same thing.

But no one is resting yet… We need to keep pushing and keep insisting that anytime anyone is talking to or about people with diabetes it is done with complete and utter respect. When I say #LanguageMatters it is not about political correctness gone mad. It is about fundamentally understanding how the words used – and the way they are used – impact and affect people with diabetes.

So pleased to keep pushing the #LanguageMatters agenda with Jane Speight!

I really tried to switch off from the external diabetes world during my recent holiday. (I would have liked to have switched off from my own diabetes too, but apparently this diabetes gig doesn’t work that way.)

But now, I’m back and playing catch up on all the things I book-marked and planned to read later. Join me!

PLAID

Do you read PLAID Journal? It’s a truly terrific open access peer-reviewed research journal full of interesting articles and research news.

The latest edition is out now, and it includes a little piece I wrote about day to day diabetes.

PROPORTIONAL

My friend Hope Warsaw alerted me to this graph which was tweeted during the recent MedX conference. I like-y very much!

WORDS AND MUSIC

Gee I have some talented friends! Melissa Lee, (there are truly not enough adjectives to describe her aweseomess), has been recording D-Parodies for a number of years now. In recent efforts to raise money for Bigfoot Biomedical’s recent JDRF walk team, she enticed people to donate with promises of new tunes. And boy did she deliver. You can see all of her parodies via her YouTube channel.

But start here for a gorgeous diabetes-themed rendition of Fleetwood Mac’s Landslide – obviously renamed ‘Lancet…’

COVERAGE ON ANIMAS

There has been A LOT written about the recent Animas announcement that they will be ceasing business in the USA and Canada.

If you’re looking to catch up, here are some things I’ve found to be particularly useful:

This comprehensive update from Diabetes Mine.

This great piece from Georgie Peters reminding us how personal these devices are to those of us wearing them.

This piece from Diabetes Wookiee, David Burren, urging Roche to step up with their pump which is still available in Australia despite no longer being in the US market.)

And just a reminder of the situation in Australia: Animas is not going anywhere yet, with disruptor AMSL’s update that it’s ‘business as usual’. Unlike our US and Canadian friends who need to make a decision quickly about changing pumps, there is no suggestions that we need to do the same. Animas is still in the Australian pump market – along with Medtronic’s offerings, the Roche Accucheck Spirit Combo pump and (from 1 November) Cellnovo.

HAVE ANOTHER COFFEE

Presented at EASD – the results of a ten-year study that showed people who drink coffee regularly are less likely to die of diabetes. Another latte, please.


DIABETES EMPOWERMENT SUMMIT

How’s this? A free 5-day diabetes summit that anyone can attend. The online Diabetes Empowerment Summit is the brainchild of Danielle Hargenrader.

Read all about it and get your ticket here. 

YOGA FOR DIABETES

More from talented friends! Rachel Zinman is currently on a book tour in the US promoting her new book – Yoga for Diabetes: How to manage your health with Yoga and Ayurveda.

You can buy a copy here.

THROW OUT THE FAX!

I was delighted when Scott Johnson included this slide in his presentation about MySugr at the recent Roche Blogger MeetUp at EASD:

Clearly I’m not alone in my frustration at the insistence of some HCPs to continue to champion (and only use) fax machines!

PEER SUPPORT SESSION WRAP UP

I wrote about the peer support session at ADS-ADEA, and my talk in the symposium. Here’s the wrap up from the ACBRD – the organisers of the symposium.

ALSO FROM THE ACBRD…

If you live in Australia or the UK, please take part in the yourSAY quality of life study. Have your say about the impact living with diabetes has on your life.

Click here to take the survey.

BINGO!

I couldn’t help but laugh when Melinda Seed developed this neat little bingo chart to be used at diabetes conferences. She tweeted it out at the beginning of EASD, just as I was lamenting that questionable language being used by presenters at the conference.

Unfortunately, I couldn’t play during talks. I would have spent far too much time shouting Bingo at inappropriate moments. Come on, people; do better!

I was slightly mortified at an exchange I heard recently between a person with diabetes and a healthcare professional. The HCP was correcting the PWD, who repeatedly referred to themselves as ‘(a) diabetic’, urging them to not use the word as some find it offensive.

Sometimes, it seems that we forget that the idea of discussing, and hopefully improving, the language used about diabetes is to better the experience of people with diabetes. My personal crusade is not about completely eliminating the word ‘diabetic’, for example.

I know many people with diabetes who use the word – as both a noun and an adjective – and are very comfortable to refer to themselves that way. This piece from Mel Seed at Twice Diabetes explains why she is more than happy to use the word. I appreciated her side of the debate. It all fits neatly into my philosophy of ‘My diabetes, my rules’.

But the point of the whole #LanguageMatters movement is not about people with diabetes defending the language choices we make. It’s about others. The Diabetes Australia Language Position Statement as never intended to be for people with diabetes. It was always for healthcare professionals, the media and the general community.

Rosie Walker, on her Successful Diabetes blog, captured it all perfectly when she said this in a recent post about diabetes language matters:

‘This is not a call for people living with diabetes themselves to ‘mind their language’. Anyone is perfectly free to refer to themselves and their condition however they wish – as in most other areas of life. This is about how other people, and especially health professionals and scientists, use language in relation to diabetes and those with it, and especially when they are not in earshot or attendance…’

When a healthcare professional tells someone with diabetes to not use a word to describe themselves, it’s just another example of trying to control the PWD. In the same way that we want choice about the devices we use or the treatment plan we employ, we demand choice in the words we use to describe ourselves and our diabetes.

I have started a separate page on Diabetogenic about all things #LanguageMatters. Click here or on the link at the top of the page for more. 


You know that old word play about why we should not assume anything? Because ‘assume’ makes an ‘ass’ out of ‘u’ and ‘me’. Yes, it’s lame and I don’t like using ‘u’ for ‘you’ (because I’m a word nerd and don’t do ‘text speak’), but the sentiment is good.

There are so many assumptions that come with diabetes. And almost all of them are destructive.

‘People with diabetes must have eaten too much <insert food/drink type> as a kid.’

‘People get diabetes because they’re fat.’ 

‘People get diabetes because they don’t exercise.’

‘Diabetes means you are sick.’ 

‘People with diabetes could be managing better if they just tried.’

Many of us will have had these sorts of comments made directly at us. Some of us will have heard people say these things. Most of us will have seen these sorts of comment perpetuated in the media and in popular culture anytime diabetes gets a mention.

And they are all wrong.

It’s time that we removed all negative assumptions and replaced it with just this:

Imagine how different things would be if that was the starting point of diabetes discussions. Instead of the judgement and finger pointing that often is associated with a diabetes diagnosis, the first thing that everyone said was ‘And now let’s talk about living well with it.’ Instead of the threats, the attitude was ‘You can thrive with the right treatment’.

Finding out someone has diabetes does not in any way give you a window into their life or an indication into their behaviour. But it does tell you that they have a health condition that requires regular management and the best possible treatment.

Imagine how much easier life with diabetes would be – and how much kinder the conversation would sound – if the next time we told someone we have diabetes, the only thing we heard was ‘Are you getting the healthcare and treatment you need?’

Wouldn’t that be a great place to start the conversation?

A week away from blogging during what happened to be a super busy week in the diabetes world. Let’s play catch up!

ICYMI #1

Bigfoot Biomedical + Abbott Diabetes Care. Details here. Great commentary from diaTribe here, and Diabetes Mine here.

ICYMI #2

Did you see Adam Browne’s piece on diaTribe about the worst food advice he’s received?

When I was diagnosed I was told ‘Eat as much low GI food as you like’ and I remember at the time that not sitting well with me. It turned out to be a disaster because I wasn’t taught to count carbs, but there was this expectation that I would be eating large quantities of rice, pasta, bread and potatoes to match the insulin dose I was prescribed.

I do wonder how different things would be had I instead been given advice that helped me manage my glucose levels, rather than feel I was constantly scuffling with them!

Vaccine buzz

I’ve always been interested in the research developing vaccinations to prevent T1D. This out of Finland was doing the rounds yesterday.

I for one welcome our new robot doctors

This article from Forbes is all about how robots will be taking on an increased role in healthcare.

#LanguageMatters in the UK

After ADA, I wrote that there was some excitement from the UK about developing a language position statement. This blog post from Rosie Walker (Successful Diabetes) and Anne Cooper got the ball rolling in terms of getting some feedback from people with diabetes with a call out for people to have their say.

(And there is a tweet chat about this very topic, which for those playing at home (i.e. Australia) kicks off on Wednesday morning at 5am. I’m going to try to be there, but seriously, I suspect I’ll read up on it at a decent hour once the coffee kicks in!)

And while we’re talking language

I am interested in language beyond just the diabetes space and was interested to read this piece about US Senator John McCain’s diagnosis of brain cancer and the inevitable rhetoric that followed. Many promised that Senator McCain would survive because he is a ‘fighter’ and a ‘battler’.

I don’t like using this sort of language to discuss health conditions, because in a fight, there is always a winner and a loser. And it suggests that people who do not survive must not have fought or battled hard enough when we know that is absolutely not true.

Why I write…

There was a lot in this piece on Medivizor from Stephanie Zimmerman, where she shares why she writes about healthcare.

Type 1 and the egg

This is a beautiful and so simple metaphor by  Maureen, who tweets as @MumofType1 to explain what living with type 1 is all about for her son.

How much access do you have to your HCP notes?

This study looked into the experiences of healthcare users with reading and providing feedback on their visit notes.

#HelloMyNameIs heading to Sydney

If you are in Sydney on 26 September, you may be interested in this free event about the #HelloMyNameIs campaign which was created by Dr Kate Granger, (I wrote about the campaign here). This week marks the anniversary of Kate’s death, and her husband, Chris Pointon, will speak about the movement. 

And finally something funny…except it’s not

Gwyneth Paltrow is an acteress, so why anyone would seek medical advice from her is a little confusing. But apparently, she has armed herself with a team of healthcare hacks professionals so that she feels that she is more than qualified to sprout wellness rubbish.

In recent times she has faced the wrath of the science community on Twitter because, amongst other absurd ideas, she suggested that women should shove a jade egg up their vaginas to…actually, I’m not really sure why. I’m not going to comment on that (beyond saying: don’t do it) because superhero OB/GYN Dr Jen Gunter has already done that.

But when one of her healthcare hacks starts talking about autoimmune conditions, you bet I’m going to chime in. Especially, when one of them, Dr Steven Gundry, claims this: ‘I have yet to see an autoimmune disease that cannot be cured or put into remission by simple dietary changes and supplementation’ and then goes on to suggest which supplements will cure autoimmune diseases. Stop it!

Gwyneth – I really liked you in that movie about deadly viruses (possibly because you died in the first 15 mins), but you need to really shush now about healthcare. And stop suggesting women shove jade eggs up our vaginas, for god’s sake!

 

Saturday afternoon I was flaked out on the sofa, the Winter sun shining palely through the front window. It had been a cold day and I’d been dealing with an unpleasant and tedious head cold, so I was enjoying the comfort of the house, a dog snoozing on my feet helping to keep me warm.

I was lazily scrolling through some things that I’d missed on Twitter and I stumbled across a protracted twitter exchange that began with this tweet:

Fair point. And reading David Gilbert’s Twitter feed and skimming through his blog, his commitment to patient-led healthcare is strong. He has a lot of experience fighting for the rights of healthcare users to be true partners in the system.

I was interested in the commentary that followed after Partha Kar, an NHS clinical director, quoted the tweet suggesting that things are different in the diabetes world. You can read that thread here.

I struggled with the exchange, feeling a little discomfort when every point made by the original poster was almost dismissed with a ‘but we are doing better’ comment, which completely and utterly missed the point.

I typed a couple of quick responses, deleting all of them. My head was foggy and I was not sure that my thoughts could be condensed in 140 characters or fewer. But I was trying to say that while I actually agree that ‘patients’ do have very limited ‘power’ and are often actively excluded from processes, that isn’t the point. For me, the discomfort was stemming from someone’s personal experiences being rejected by someone who is actually not in the same position – or rather, by someone who holds a position of responsibility in the very system being questioned.

Let’s reframe it this way. There is a gender pay gap that continues in every industry. Women are significantly under-represented as Company Board Directors, as CEOs, and in politics. Health outcomes for women are worse than they are for men. As a woman, I am conscious of the imbalance; I have fought for equality for as long as I can remember; I see the discrimination; I have experienced the discrimination firsthand.

Are there initiatives in place to try to address these gaps? Yep. Is the situation improved today as compared with 100 years ago? Perhaps. Are there men who are fighting for the rights of women? Of course there are.

But does that mean that women who are affected by the imbalance should have their (our) concerns and experiences dismissed because some are ‘trying to make a difference’? Absolutely not.

It is the same in healthcare. Just because there are some dedicated people steadfastly working to support and deliver a more person-centred, inclusive approach with its foundations in true partnership doesn’t mean that the problems are not still there. And it certainly doesn’t mean that we should stop paying attention to those who speak up about the inequality.

If people are feeling excluded – especially people with 30 years of experience in health advocacy, a Twitter following and a blog – we need to believe people are being excluded.

Just as it is not the place for men – even men who might be unequivocally feminist in their words and actions – to tell women that we need not feel discrimination because there are people committed to levelling the playing field, it is not up to HCPs to question the experience of healthcare consumers when we say we have no power and no ability to influence.

For the record, I agree with David’s original tweet. How much power do healthcare consumers really have in shaping healthcare? How much opportunity is there to truly influence the way the system, activities and programs are designed? In fact, how much of the system, and how many of the activities and programs are co-designed?

If we look at diabetes, how many positions are dedicated specifically to people affected by diabetes on Boards, expert reference groups, working parties, organising committees (etc.)? Can you think of an example when the split between HCPs and people with diabetes was equal?

And finally, a thought on language. The word ‘patient’ was used throughout the Twitter discussion and I believe it is problematic. It’s not a word I use; I don’t refer to myself that way. The Diabetes Australia Language Positions Statement advises against the use of the word because it ‘implies the person is a passive recipient of care, rather than an active agent in his or her own self-care’.

In a discussion about people feeling they have no power, using a word that clearly diminishes the role and involvement of the central person in the healthcare equation speaks volumes. At least I think it does.

Yesterday, I wrote a quick review of the language session at #2017ADA and my excitement as I anticipated the session.

I don’t want to sound Grinch-like, but I walked out of the session feeling less enthused than I had when I walked in. That’s not because the speakers weren’t good. They hit the mark and said all the right things.

And it’s not because I am not excited to see the ADA and AADE developing and getting ready to launch their Language Consensus Statement (it’s due out in August). I am; I am so excited!

It’s because I didn’t hear anything new, and the time has come for us to do something more with language matters. Because, #LanguageMatters.

It was six years ago that Diabetes Australia launched ‘A New Language for Diabetes’ position statement. In collaboration with the Australian Centre for Behavioural Research in Diabetes, Diabetes Australia wanted a concise, easily shareable document that could straightforwardly and succinctly explain how to communicate with and about people with diabetes. Unapologetically, it called out the words that harmed and offered replacements that were more inclusive, less judgemental, all in an attempt to use language that didn’t make us feel like we were constantly failing at life with diabetes.

Six years is a long time in diabetes. Disappointingly, there’s still a lot that’s not great about the way diabetes is discussed in the media, in healthcare settings and, unfortunately, by healthcare professionals. We haven’t reached a position of respect; we have not managed to leave all judgement at the door when speaking about diabetes; we have not even started to eliminate stigma.

When the Language Position Statement was initially launched in Australia, I saw it very much as as first and most welcome step. Was it perfect? No. It was a starting point, not the end of it all.

It was never considered as definitive document, but it certainly a great place to begin; a living resource that could evolve. As the ACBRD did more and more work in the stigma space, it became very clear that words do indeed matter, and Diabetes Australia took the evidence and continued to push the envelope and innovate in this previously unexplored space.

Perhaps that’s not actually a correct statement. Language and words had long been on the radar of people living with diabetes. Diabetes camps had stopped using words such as ‘good’ and ‘bad’ to describe glucose numbers; the debate on the word ‘diabetic’ had been going for years, and many rallied against the words used that blamed, judged and slurred people with diabetes – whether it be for developing diabetes in the first place, or how well we are managing it.

But the Language Position Statement was the first time that it was all there in one neat document, backed by evidence to support the thoughts of PWD. (Jane Speight and I gave a number of talks which started with me ranting and waving my hands around about how language and words affects those of us living with diabetes, and concluded with Jane stepping up to present the evidence. Those talks packed a punch and made it very difficult for people to ignore the issue or to keep referring to it as political correctness gone mad.)

But now, six years on, I want more. I don’t want it to just be a debate about whether or not we use the word ‘diabetic’ (although this is still an important issue). We get waylaid when that is our whole focus, and I feel that anywhere that is just now coming to the language party needs to be a step ahead of the development of a language position statement. That’s been done and has been in circulation for over half a decade. Use it, adapt it, rebrand it and make it your own, but I’m not sure there is a need to recreate the wheel and start from scratch?

Not when there is still a lot more to do.

What’s the next frontier in language and diabetes? Maybe it’s diabetes conferences.

Because, they are a mess, with many presentations still peppered with words such as ‘non-compliant, non-adherent, poor control’, or referring to participants in research as ‘subjects’, and often (and sadly) a not a great understanding of the difficulties of living with diabetes.

With a Language Positions Statement already in existence, a great (and simple!) start to remedy these shortcomings could be for conference organisers to send a copy of it to all speakers, explaining there is an expectation that slide decks and talks will be in line with the document and its recommendations. And while they’re at it, the same expectations should be in place for anyone showing in the exhibition hall at the conference, or writing about the event. Along with embargo regulations, press corps could also be sent the position statement.

We know that organisations have the capacity to be vigilant – perhaps had the ADA put effort into urging appropriate use of language at the conference instead of enforcing their archaic photo ban, they wouldn’t have been hit so hard on the socials.

It’s time for us all to expect more and to demand better. How are YOU going to do that?

‘What was your favourite thing about ADA?’

I’ve been asked this question a few times now since returning from San Diego. And even though the meeting was so busy, with a lot of super interesting information being shared, it was actually an easy question for me to answer.

‘Language’, I answer without hesitating. ‘Specifically, that language was on the agenda at the meeting for the first time.’

On Sunday, there was a whole session dedicated to language in diabetes: ADA – AADE Joint Consensus Statement on the Use of Language in Diabetes. I attended eagerly because, of course, #LanguageMatters is my thing. It’s also the ‘thing’ of others far smarter than me, including these two women who let me sit with them and jump up and down like an excited puppy:


Professor Jane Speight led the development of the Diabetes Australia Language Position Statement, and Ann Morris, last year’s Australia Diabetes Educator of the Year, has been a champion of people with diabetes for a very long time.

There were some highlights in the language session for me, particularly from the first speaker, Dr Jane Dickinson. Jane recently wrote about a piece for Diabetes Spectrum about the effect of language on diabetes. She has type 1 diabetes herself and is a CDE, and her presentation was peppered with personal experiences of the role of language in diabetes care. (You can read more from Jane via her blog here.)

One particular comment Jane made really highlighted the rock and hard place between which PWD often find ourselves:

Susan Guzman was the second speaker and she pointed out that words not only affect the person with diabetes, but also create a bias for people working with us. The second that a PWD is described as ‘non-compliant’, ‘uncontrolled’ or that they ‘don’t care’, HCPs feel differently about the person. Appropriate language use isn’t important only for the person living with diabetes. It also matters if we want those working with us to treat us respectfully.

The final speaker was Melinda Maryniuk, CDE, from the Joslin Center and she spoke about the ADA-AADE Language Consensus Statement, and the five guiding principles that form the basis of the document as captured in this tweet from @MarkHarmel:

It’s not surprising that I was excited that this session was on the program. It was the first event I added to my calendar and I rearranged meetings to ensure that I didn’t miss it.

But I left wanting more.  A lot more. And tomorrow, I’ll write about why.

Back from the ADA conference after whirlwind few days in San Diego which basically involved 19-hour days sandwiched between the first day (and 8-hour meeting) and the final day (a couple of short meetings before heading to the airport to fly home). Unsurprisingly, I slept most of the way home.

There were some absolute standouts of the meeting and here they are in super quick dot points. Some I’ll write about in more detail when I’ve finished hugging my family and infusing Melbourne coffee back into my exhausted body.

PR Fail

The ADA’s PR machine needs attention after the completely misjudged way they dealt with objections to their misplaced and archaic ‘photo ban’. It became the story of the first few days of the meeting and they really will need to reconsider what they do next year. (More on this another time, but here is a good summary from Medscape.)

Innovation away from the conference

While the conference is always full of late-breaking research and an exhibition hall of diabetes technology, the satellite events are often where the real innovation is at! On Friday afternoon, I went to the Diabetes Mine DData-Exchange event and was lucky to see and hear some of the latest and most innovative tech advances happening in diabetes, including lots in the DIY/#WeAreNotWaiting world.

Mostly, the room was full of those who knew what was going on in this space, so there really were only a few people who were surprised that there are many walking around with their own DIY kits, (which always makes me chuckle, especially if it’s a HCP having their mind blown by something PWD have known about and been doing for a while…)

(A bit of a watch this space from me as I am about to embark on my own build, which is slightly terrifying. The only thing giving me any confidence is that I have these two Wonder Women to call on if (when) I am completely lost!)

Wonder Women! Dana Lewis and Melissa Lee and their magical machines.

More at #Ddata17

Life for a Child

The IDF Life for a Child update, annually held at the start of the meeting, was, in equal measure, enlightening and despairing.

In this video, hear from Life for a Child Education Director, Angie Middlehurst, who recently visited the Diabetes Association of Sri Lanka and met some young people benefitting from the Program.

If you would like to consider helping Life for a Child, it costs only $1 per day to provide full diabetes care for a child. That’s right, one dollar a day. If you can, please do donate.

 

With Life for a Child’s Education Director, Angie and Health Systems Reform Specialist, Emma.

 

Who has a meeting at 5.30am?

Anyone who believes these meetings are junkets would reconsider the first time they need to be dressed, coherent, communicative and respectable for a 5.30 session. That’s 5.30am. And on the Saturday morning of the conference, I found myself in a room with a lot of other people (also foolishly awake at that time), to listen to the latest in CGM studies.

Thankfully, the session was super interesting with a lot of very valuable information being shared. (I really would have been pissed if I got up and it was a waste of time…)

Dr Steven Edelman from TCOYD was, as always, enlightening and added a most important ‘personal touch’ as he shared some of his own experiences of CGM. And some brilliantly relevant sound bites to remind the audience that while they may be focused on the machines and the algorithms and the clinical outcomes, this is about people living with diabetes.

Trying to tweet everything Dr Steven Edelman was saying…

Diabetes Hands Foundation wake

The news about the closure of the Diabetes Hands Foundation, and the move of its forums to Beyond Type 1 was met with sadness, but also a lot of optimism. Innovators in the online community, DHF was the first online diabetes network I ever felt a part of. It spoke to me, but mostly, it was inclusive. That’s what happens when you have people like Manny Hernandez, and later Melissa Lee, at the helm, and a team around you of people like Mila, Corrina, Emily and Mike.

DHF founder, Manny Hernandez.

We farewelled the DHF at a wake in a bar on 5th Ave in San Diego on Saturday evening and the love and gratitude for DHF was overwhelming. Melissa asked us to recall DHF’s Word in Your Hand campaign as a tribute to Manny and DHF.

My word on my hand… We can always use more of this.

I’m honoured to have been a part of it.

Language

Oh yeah, there was a language session at #2017ADA and I have PLENTY to say about it. Maybe next week….

Sex, Insulin and Rock ‘n’ Roll

The team from Insulet threw an event on Sunday night way up in the sky, overlooking Petco Ballpark, home to the San Diego Padres, and we were presented with a panel of diabetes advocates prepared to talk about anything and everything. Brilliant in the way it was candid, unashamedly open and, possibly for some, confronting. Well done to the panel members who really were prepared to answer every question with personal insight and experience. This format really should be rolled-out as widely as possible to as many people as possible to help breakdown any embarrassment, or idea that there are taboo topics in diabetes.

Children with Diabetes

I was lucky enough to be invited to attend the annual CWD-ISPAD dinner on Monday night and speak with a number of healthcare professionals working to improve the lives of children living with diabetes.

Jeff Hitchcock, founder of CWD, is a personal friend now. I guess that’s what happens after you attend a Friends for Life conference and are welcomed into the family. FFL Orlando is taking palce in three weeks and my family’s time at FFL remains one of the most overwhelming and positive experiences of my life with diabetes.

I caught up with Jeff a few times throughout the conference to speak about the organisation’s work. He gave me a CWD medallion, which is now firmly wedged in my wallet as a reminder of not only my FFL experience, but also value of Children with Diabetes.

diaTribe

I could complain about my 19-hour days, but then I think about Kelly Close from diaTribe and then feel sheepish for even suggesting that I’m working hard! On the final night of the conference, diaTribe hosted three events and I attended the later two: Musings Under the Moon and Musings After Hours.

These events bring together leaders in diabetes technology and innovation and digital health and offer an opportunity to ask questions and challenge (and be challenged!) in a far less formal situation that the official ADA conference. For me, this is where I learn the most as the speakers are prompted by hosts Kelly and Adam Browne to really reflect on where we are going in diabetes innovation. My only misgiving about these events is that there are not enough people attending. That’s not to say that the spaces were not packed to the brim – they absolutely were. But I do wonder if  perhaps it’s the people who really need to hear the realities of diabetes technology are not in the room…

MedAngel

I meet Amin from MedAngel as part of my time with the European Roche Blogger Group. Amin has created an easy-to-use sensor and app to help people with diabetes ensure insulin is kept at the right temperature. More about this another day, but in the meantime (after I’ve been using my sensor for a while), you can read about it here.

Learning all about MedAngel, with Amin.

Take aways

ADA is a very large conference. There is a lot going on, there are a lot of people around and I always leave with a lot to think about. Over the next few days…weeks…I’ll start to gain some clarity about a lot of what I saw, heard and learnt. It’s always the way after a big meeting like this one.

Someone asked me if I enjoyed the meeting and I suggested that was probably the wrong word to use. It was very worthwhile. I learnt plenty. I was able to catch up with advocates in the space who continue to push boundaries and lead the way in insisting that all work in the diabetes space is ‘person-centred’. People with diabetes are expected at this conference and seeing us as just being there – rather than having to fight for our place – inspires me to keep working better and harder.

Disclosures

I attended the ADA Scientific Sessions as part of my role at Diabetes Australia who covered my expenses, except for my first two nights’ accommodation which were covered by the International Diabetes Foundation so I could participate in meetings for the World Diabetes Congress where I am Deputy Lead for the Living with Diabetes Stream. 

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