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There is an indescribable feeling I have following a diabetes conference. Swirled in amongst the exhaustion, information overload, jet lag (because conferences are always in ridiculous time zones that are not AET), and memories, I come back galvanised in a way that can only happen when spending time with those in my tribe: others living with diabetes.

I returned from three days in Vienna bone-achingly exhausted. After being reunited with my family and not being able to stop hugging them, a few days of not-great-but-okay sleep and bucket-loads of Melbourne coffee under my belt, and time to process and write about what I learnt, I find myself recalibrated and ready for what’s next.

The hours of travel is a memory, the conference sits comfortably alongside all the others I’ve been too, my conference name badge is hanging in my office with all the others, and I’ve plans already underway from successful meetings.

In a lot of ways, the status quo has been restored and I am back to my real life after a few days of conference life.

But what is not the same is the level of vitality I now have, my veins pounding with the vigour that comes only from spending time with the people who are working to and for the same things because they get it at a personal level that is only apparent to those of us whose very DNA is affected by this condition.

I came to realise a few years ago that I have an invisible jar in my mind, and how empty or full that jar is depends on the time I’ve spent with likeminded diabetes friends. When the jar is nearing empty, I find it difficult to focus my energies on the advocacy and support issues that often are front and centre of my mind. I feel myself flailing and falling short because I don’t have the support of those I need to boost me up.

Of course, I am lucky enough to have others with diabetes around me even when I am in Melbourne (hello neighbour!), but it is those I see at these sorts of conferences – the ones whose minds and hearts are full of similar ideas, similar frustrations and find similar reasons to celebrate– that fill that jar right up. It is when I can simply turn to someone because they are sitting right there, have an animated conversation and high five each other with our enthusiasm that I feel capable and able to take on the world.

Those people who share my pancreatically-challenged existence, who breathe the same health condition, and struggle, celebrate and despair in similar ways to me, are the ones who fill up the jar ways to sustain me until the next time. My motivation is high, the momentum fast, my mind is working overtime. And my jar is overflowing right now with those people who may have beta cells that don’t work, but they make up for it in ways you couldn’t even begin to imagine.

Tine – who inspires me every time we speak.

I was very lucky to be invited to attend the Roche #DiabetesMeetup held at ATTD in Vienna. About 60 advocates were brought together on the thirty-fifth floor of a building high above Vienna. I reconnected with friends and fellow advocates from Italy, Sweden, Germany, Belgium and welcomed UK advocates for the first time to the blogger group. The dynamic in this room is electrifying – these are smart, passionate, funny, outspoken, opinionated people with high expectations when it comes to their diabetes management experience – exactly the sort of people you want around you when you are developing diabetes technology solutions.

Elena from Italy.

I remain fascinated – and impressed – by these Roche events, even though this is the fourth one I’ve attended. I have a level of frustration at times when attending similar events because instead of them being used as an opportunity for engagement and interaction, they become sales pitches, with attendees being spoken at. I have sat in other events feeling as though I am being told what and how I should feel about my own diabetes with those speaking at me making all sorts of assumptions based on some ridiculous market research that involved anyone other than real people with real diabetes!

By and large, these #DiabetesMeetup events are the very opposite of that.

As I have said before, I am not naïve. I am fully aware that we as bloggers and patient advocates are worth a lot to industry. We blog, we Instagram, we Tweet, we Facebook. We  have a voice and we use it. We have a platform – however big – that means we are very privileged to be able to speak about our experiences and have people listen.

By engaging with us in this way, we have become part of Roche’s – a very big drug and device company – 21st century marketing and communications plan. We are part of their PR machine. And I am absolutely okay with that. I can leave at any time. I can not write about what goes on at these events if I don’t want to.

I have also said before that it would be worse for us to not be part of their plan – or if they were stuck in the 20th century and refusing to actually work with people with diabetes.

Ute Volkmann from Roche Global doing a stellar job running the day.

The reason these events continue to leave an impression is because they are absolutely not an opportunity for Roche to lecture us and do a big whizz bang display of their technologies. Of course we see what they’re up to. But then we tell them what we think. (At the first Roche #DiabetesMeetup I attended in Munich, we were shown their in-development CGM device. The feedback wasn’t all that favourable. I have not seen or heard anything more about this product, and can only imagine that their R&D team had a lot to think about after rather negative reviews from the people who were hoped to be using the device.)

Previously, I have refused to attend advocate sessions in the past because there was an expectation that all attendees would be using the company’s product, and if not, we were expected to hide away any competing devices . Not once at these events has anyone asked me what I use, tried to give me a Roche product or suggested I use one of their devices. (For the record and full transparency, the only Roche product I use is my lancing device which I paid for myself and the lancets that come with it. I’ve not needed to buy more lancets because I think the lancet device came with about 10 of them, so I’m good until about the middle of the century.)

The big ticket item in Roche’s diabetes tech bag at present is the Eversense XL. The announcement at #DibetesMeetup that the implantable sensor now has a lifespan of 180 days. To illustrate the point, we heard that if you inserted a sensor while there was snow on the ground, you would need to replace it in the height of Summer.

Annie and I can always be trusted to bring down the overall tone of an event.

I am all for continued innovation in sensor development, and I can certainly see the appeal of the Eversense. I spoke with a couple of people at the event who were wearing them and their experience had been super positive. I’ve not worn the device and am most interested in the real life experience: how does it feel on?; how annoying is the transmitter and does it fall off?; the tape required for the transmitter to adhere to the skin – does it irritate?  I am also keen to see how Eversense will be able to integrate with existing diabetes tech. And, I’m ever mindful of expected cost to the person with diabetes because I want to know if this is something that will be available and accessible to many people, or just a lucky few.

Roche followed up the blogger event with a symposium on the Friday of ATTD. It was here they announced they would be supporting JDRF’s Open Protocol proposal (which I discussed in yesterday’s post.)

While the formalities are all interesting, it is often the discussions that happen outside the official program that have real impact. I had a couple of very robust conversations about the role PWD have when working with industry. We know there are people in the diabetes community who have a complete and utter aversion to any interaction with device and drug companies.

My position on this is and has always been clear: our role is to be part of every single discussion about diabetes and every level and every step of the way. My only insistence is that there is transparency. I always disclose when I have been funded to attend an event, if I have been given product or working with any company on a project.

I was also involved in a brilliant conversation about the whole idea of sharing CGM data with loved ones. Some people were completely against the idea, unable to consider a single time when they would ever want anyone else to see their CGM numbers or find it useful. Others are big fans of share capabilities, because it makes their families feel safe when they are away. I see both sides to this story.

I had lots of chances to hear what people had been up to and how their advocacy efforts were playing out. One of the wonderful things about coming together every six months or so is that there has been time for projects to grow, blossom and show results. It is always great to hear people doing so well in their endeavours to provide support to others with diabetes.

In a connected world where I see most of these European diabetes advocates online at least every week, it is undeniable that these face-to-face opportunities provide an extra level of support and engagement. I am extraordinarily grateful to have that opportunity – to see, learn from and work with such a dynamic group of people I am fortunate to call friends.

What’s the collective noun for a group of dynamic diabetes advocates?

DISCLOSURE

Roche Diabetes Care (Global) covered my travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #ATTD2018. They also assisted with providing me press registration to attend all areas of ATTD2018. As always, my agreement to attend their blogger day does not include any commitment from me, or expectation from them, to write about them, the event or their products. 

Three days in Vienna is never going to be enough, and neither were three days at ATTD. But mother guilt is a very strong motivator for getting back home as quickly as possible.

This is the second ATTD conference I attended. Last year, I returned a little bewildered because it was such a different diabetes conference to what I was used to. But this year, knowing what to expect, I was ready and hit the ground running.

There will be more to come – this is the initial brain dump! But come back from more in coming weeks. Also, if you emailed me, shot me a text, Facebooked me, Tweeted me or sent me a owl last week, I’ll get back to you soon. I promise. Long days, and long nights made me a little inaccessible last week, but the 3am wake up thanks to jet lag is certainly helping me catch up!

So, some standouts for me:

DIY

The conversation shift in 12 months around DIY systems was significant. While last year it was mentioned occasionally, 2018 could have been called the ATTD of DIY APS! Which means that clearly, HCPs cannot afford to think about DIY systems as simply a fringe idea being considered by only a few.

And if anyone thinks the whole DIY thing is a passing phase and will soon go away, the announcement from Roche that they would support JDRF’s call for open protocols should set in stone that it’s not. DANA has already made this call. And smaller pump developers such as Ypsomed are making noises about doing the same. So surely, this begs to the question: Medtronic, as market leaders, where are you in this?

It was fantastic to see true patient-led innovation so firmly planted on the program  over and over and over again at ATTD. After my talk at ADATS last year – and the way it was received – it’s clear that it’s time for Australian HCPs to step up and start to speak about this sensibly instead of with fear.

Nasal glucagon

Possibly one of the most brilliant things I attended was a talk about nasal glucagon, and if diabetes was a game, this would be a game changer! Alas, diabetes is not a game, but nasal glucagon is going to be huge. And long overdue.

Some things to consider here: Current glucagon ‘rescue therapy’ involves 8 steps before deliver. Not only that, but there are a lot of limitations to injectable glucagon.

Nasal glucagon takes about 30 seconds to deliver and is far easier to administer and most hypos resolved within 30 minutes of administration. There have been pivotal and real world studies and both show similar results and safety. Watch this space!

Time in Range

Another significant shift in focus is the move towards time in range as a measure of glucose management rather than just A1c. Alleluia that this is being acknowledged more and more as a useful tool, and the limitations of A1c recognised. Of course, increasing CGM availability is critical if more people are going to be able to tap into this data – this was certainly conceded as an issue.

I think that it’s really important to credit the diaTribe team for continuing to push the TIR agenda. Well done, folks!

BITS AND PIECES

MedAngel again reminded us how their simple sensor product really should become a part of everyone’s kit if they take insulin. This little slide shows the invisible problem within our invisible illness

Affordability was not left out of the discussion and thank goodness because as we were sitting there hearing about the absolute latest and greatest tech advantages, we must never forget that there are still people not able to afford the basics to keep them alive. This was a real challenge for me at ATTD last year, and as technologies become better and better that gap between those able to access emerging technology and those unable to afford insulin seems to widening. We cannot allow that to happen.

Hello T-Slim! The rumours are true – Tandem is heading outside the US with official announcements at ATTD that they will be supplying to Scandinavia and Italy in coming months. There are very, very, very loud rumours about an Australian launch soon but as my source on this is unofficial, best not to add to the conjecture.

How’s this for a soundbite:

GOLD STARS GO TO….

Massive congrats to the ATTD team on their outstanding SoMe engagement throughout the conference. Not a single ‘No cameras’ sign to be seen, instead attendees were encouraged to share information in every space at the meeting.

Aaron Kowalski from JDRF gave an inspired and inspiring talk in the Access to Novel Technologies session where he focused on the significant role PWD have in increasing access to new treatments and his absolute focus on the person with diabetes had me fist pumping with glee!

Ascensia Diabetes packed away The Grumpy Pumper into their conference bag and sent him into the conference to write and share what he learnt. Great to see another group stepping into this space and providing the means for an advocate and writer to attend the meetings and report back. You can read Grumps’ stream of consciousness here.

Dr Pratik Choudhary from the UK was my favourite HCP at ATTD with this little gem of #LangaugeMatters. Nice work, Pratik!

ANY DISAPPOINTMENTS?

Well, yes. I am still disappointed that there were no PWD speaking as PWD on the program. This is a continued source of frustration for me, especially in sessions that claim to be about ‘patient empowerment’. Also, considering that there was so much talk about ‘patient-led innovation’, it may be useful to have some of those ‘patient leaders’ on the stage talking about their motivations for the whole #WeAreNotWaiting business and where we feel we’re being let down.

I will not stop saying #NothingAboutUsWithoutUs until I feel that we are well and truly part of the planning, coordination and delivery of conferences about the health condition that affects us far more personally that any HCP, industry rep or other organisation.

DISCLOSURE

Roche Diabetes Care (Global) covered my travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #ATTD2018 (more to come on that). They also assisted with providing me press registration to attend all areas of ATTD2018. As always, my agreement to attend their blogger day does not include any commitment from me, or expectation from them, to write about them, the event or their products. It is, however, worth noting that they are doing a stellar job engaging with people with diabetes, and you bet I want to say thank you to them and acknowledge them for doing so in such a meaningful way.

This morning, I saw news that President of the Australian Medical Association, Michael Gannon, wants a shock campaign, similar to our hugely successful QUIT (anti-smoking) campaign, to address growing obesity rates, and increase understanding of the ‘frightening end-stage health results of obesity-related type 2 diabetes such as limb amputation, blindness, stroke, heart and kidney failure.’ (The Courier Mail article where this quote is from can be found beyond a paywall here. Some details also freely available here.)

That quote alone would have put me off my breakfast if I was the breakfast eating type. Alas, I am not. Which is good, because there was more…

In an accompanying editorial (also behind a paywall), there was the brilliant idea that ‘…there is room for some shock and awe education…child-friendly information that is both understandable and impactful when it comes to the consequence of living with type 2 diabetes’. The editorial again made the flawed connection between this idea and the success of anti-smoking campaigns.

We can point to the triumph of the QUIT campaign – and should do so as it has been an extraordinarily successful – and long term – initiative. But if anyone believes the success of QUIT came from some shock advertisements on TV, they are so wrong. This campaign has always been a multi-pronged approach: advertising, legislation, taxes, education and – most importantly – funding, and that is why it’s been so successful.

Alongside the high-rotation television, radio and print media commercials (and in more recent times, online ads), there was legislation. Cigarette advertising was banned. As a kid, I remember Summer being brought to us by Benson and Hedges. As we watched the Aussies playing the West Indies in the cricket (seriously, you want me on your trivia team if the questions are about the 1980s West Indian cricket team. I still have a crush on wicket keeper Jeffrey Dujon) it was advertisement after advertisement of cigarettes. The fence around the MCG was adorned with golden B&H logos.

And then, that stopped. Tobacco advertising on television and radio was prohibited as was all print advertising. No longer could cigarette companies hire billboards to spruik their products. Today, cigarettes sold in stores must be hidden away in a cupboard without any advertising at all.

And new and steep taxes were introduced, increasing the cost of cigarettes more and more and more each year.

Smoking became illegal in more and more places: firstly there was no smoking in restaurants and cafes, then pubs. Most recently, smoking has been banned anywhere that food is served, meaning that the last place to have a smoke while eating (outside seating at a café or in an open beer garden) is now not an option either.

There were education programs funded to provide information about the dangers of smoking.

But smoking is not obesity. Tobacco is not food. We can’t use the same approach as the ‘every cigarette is doing you harm’ idea (used recently as part of QUIT). Food is much more nuanced. It’s fine to eat so-called ‘junk food’ occasionally. While there is no safe level of smoking, there is a safe level of eating a little bit of everything!

The idea that some scary advertisements on prime time will in any way solve the issue of obesity is ridiculous. Will these advertisements be shown alongside those for Macdonald’s latest burger, or a new sugary breakfast cereal? Will telling kids the dangers of being overweight and eating ‘bad’ foods happen before or after their Milo– or KFC–sponsored sporting activities?

If we are seriously going to address the obesity issue, we need to get serious with all aspects required for significant change. We need advertising controls, we need (sugar) taxes, we need proper, funded education programs.

And we need to get the messaging right. I was so disappointed to see Michael Gannon single out type 2 diabetes in today’s news. When we talk about the consequences of obesity, we need to stop being so selective about what we connect it to.

Obesity may be a risk factor for type 2 diabetes, but it is also a risk factor for other conditions, including some cancers and cardiovascular disease. And yet we would never,  ever blame someone for developing breast or bowel cancer – a diagnosis of which obesity may or may not have contributed to. It is too easy – and lazy – to single out type 2 diabetes.

I don’t for a moment think that we should bury our head in the sand and do nothing about the obesity situation in Australia. But we need to do it properly, we need to do it collaboratively, we need to do it honestly, and we need to do it sensitively.

Here I am speaking too fast, hands waving erratically (#TooMuchCoffee), with an idea about how we can get Spare a Rose, Save a Child better known outside the diabetes community…

 

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It’s easy to remember the difficult moments we’ve experienced at the hands of healthcare professionals who have been less than kind.

And, equally, we remember those moments where kindness was shown in spades.

I know I certainly remember moments of kindness in healthcare. And those moments transformed me. I so appreciated the kindness that came from HCPs at moments when a tsunami of grief or despair or pain or a diagnosis washed over me, knocked me to the ground and left me doubtful that I would ever be able to get back up again.

I remember kind words, the silences afforded to me giving me a moment or two (or dozens) to think, the time I was given to understand what was happening and formulate a plan to manage… I remember them all because they left me stronger, more determined, better supported and far more empowered to cope.

Kindness is a highly underrated quality in healthcare. I’m not sure how it should be included in a curriculum full of critically essential information, but it needs to be taught from the very beginning of any healthcare courses, and it’s importance highlighted and stated over and over and over again.

In the last year or so, I’ve read a few books written by (as the publicity often claims) ‘healthcare professionals turned patients’. (I’ve found this to be quite an odd term, because surely everyone at one point or another has been a patient.)

A recurring theme throughout the books is how difficult the HCPs have found it being on the other side of the HCP / patient divide. They often appear astounded at the red tape and bureaucracy they came up against, the hoops they need to jump through to receive the appropriate care, and the sheer unfriendliness of the system. And they write about the extraordinary moments of kindness that often feel far too infrequent.

Sometimes, they have written about how they didn’t realise that the way they themselves behaved could be interpreted as having a lack of consideration and kindness – explaining it was simply their manner and how they made sure they got through the day as efficiently as possible in a system often built on the foundation of complete and utter inefficiency. And yet now…now they understood.

While the books I read have been beautifully written, heart breaking at times, and often end terribly, the stories in them were not surprising. They tell truths about the system – and the lack of kindness – that people with diabetes face every day in every encounter.

When Kate Grainger launched #HelloMyNameIs, she was echoing the calls of countless people before her: please treat us like people. Please tell us what you are doing here. Please know we are scared. Please tell us who you are and what your role in my care will be.

She did it beautifully, simply, eloquently and changed the landscape of healthcare communication. I am so sad that she had to be so ill for this to happen. But her legacy is one for which I am so grateful.

Kindness in healthcare makes all the difference. Some may think it is completely unnecessary and that as long as we are receiving the right diagnosis, good care and excellent treatment, there is nothing more we need. But that is not true. Kindness adds a human element. We need warm hands, warm hearts and warm words alongside the cool tech, sterile environments and scary diagnoses.

Kindness takes no more time; it takes no more effort. But it’s effects can indeed be monumental.

Recently, I spoke with someone who had been diagnosed with type 1 diabetes about twelve months ago. A mutual friend had connected us.

‘How long have you had diabetes?’ That was her first question.

‘Almost 20 years,’ I said.

‘I’m really struggling. Will I move on and get over it?’

I wish I had been able to say something to ease her anxiety. Instead I just nodded and told her she would be okay.

But I haven’t been able to stop thinking about that question.

Because, the truth is, I don’t think we do move on. I don’t think we do get over it. We move through it. We learn to get through it, but it’s a chronic health condition and it never, ever goes away.

I went through some tough times a few years ago and I remember a conversation with a friend who was a great source of comfort to me. ‘When does this awfulness stop? When does it go away?’ I asked, tearily, one day.

‘It doesn’t, but it will get easier. Think of it like this… You’re in your car and you’ve just driven past a horrific car accident. You can’t stop, you have to keep driving, but you are driving very, very slowly because there is a lot of traffic backed up. You’re shocked and can’t believe what you have just seen. It’s gruesome. You look in the rear view mirror and you can still see it – all the details, all the goriness, all the pain.

You can’t help but keep checking the mirror. Every time you do, you feel the horror of what you saw, but the accident is a little further away in the mirror’s reflection, so the detail of what you are seeing is a little less.

After a while, all you can see are some flashing lights and a crumpled mess, but no details – it’s starting to be a blur and the shock and pain you felt is starting to numb.

And then, eventually, after a long time, you look back and you see nothing. You’re on the open road, going about your driving, and all you see behind you is road and other cars. But you still think about what you saw. You still have flashes of it. You still remember it.

It doesn’t go away – you don’t get over it. But you got through it. And your life will be forever changed by it. But it will always be there.’

I remember being incredibly reassured by this analogy. And it was actually so true. The pain I felt did wane – I never forgot it and I’m not ‘over’ it. But it is far more distant in my rear view mirror now and eventually, it may completely disappear from view. But it is still part of my memory bank.

I’d never applied this way of thinking to diabetes – that analogy belonged to a time of incredible and quite acute emotional pain – but it actually is perfect for diabetes too.

I wish my response to my new friend’s question was simply: ‘I don’t think that I have moved on from diabetes; I don’t think I am over it. But it is easier today than it was twenty years ago. And every day I move through it, and I get through it. I hope that gives you some comfort.’

I look at those who have gone before me and those who are living a diabetes life alongside me and I see us all moving through it. Some days are harder, some days are easier. But we keep moving. We move through diabetes. As best we can.

It’s that time again. Supermarkets are covered in red heart-shaped foil balloons, fluffy heart-shaped pillows and velvet heart-shaped boxes of chocolates. Florists are about to hike up the price of roses by three or four hundred percent. And the sex shop in my neighbourhood has an odd display of edible underwear in the front window, surely begging the question: who the hell actually thinks that is a good idea as a gift for any occasion? Anyway, I digress..

It must be Valentine’s Day.

We don’t do Valentine’s Day in our place. It is a Hallmark occasion if ever there was one and quite frankly, the idea of being loving and affectionate and amorous one day a year is ridiculous and would leave me feeling very short-changed.

But despite my complete and utter aversion to organised romance, I have, for the last few years, thrown my weight behind Spare a Rose, Save a Child. And today, with two weeks until Valentine’s Day, it’s time for me to start talking about it again…A reminder of how the whole Spare a Rose thing works:

Instead of giving your Valentine twelve (overpriced) roses, give them 11, saving yourself about AUD$6. Donate that six bucks you’ve saved to Spare a Rose.

All funds raised by Spare a Rose go directly to the Life for a Child program which provides insulin and diabetes supplies for kids in need and your six dollar donation is enough to provide a month’s worth of insulin to a kid who might otherwise not have any.

It’s pretty easy and you don’t need to be good at maths to work out how much to donate to actually make a difference.

Of course you can give more – you can forgo the flower thing altogether, donating the cost of the whole dozen (meaning you’ve just provided a full year’s worth of insulin for a child). Aaron knows my favourite sort of vase on Valentine’s Day is an empty one, with the cost of the whole bunch going to Spare a Rose.

You know, here in Australia it the most it will cost to buy insulin is $39.50. If you have a healthcare card it’s $6.40. We really are so fortunate that the vast majority of Aussies don’t have to worry about insulin prices increasing at terrifying rates or insulin not actually getting into the country. I don’t for a moment think our healthcare system is perfect.

But it is a far cry from places where children and adults are dying because they cannot access insulin. That is the reality for a lot of people, and we can do something about it.

Six dollars. That’s all it takes. And it is as easy as clicking here. Please donate.

DISCLOSURE

Spare a Rose Save a Child is an initiative of a few well known advocates from the DOC in the US. In the last couple of years, they’ve invited me and advocates from the UK to be involve in the campaign. (Obviously, I receive no funding to work on this, and am doing it because I believe in it.)

New year, new jumble. And lots of saved links from the last few weeks to share.

#OzDOC 2.0

Did you know that after OzDOC had it’s ‘final’ tweetchat at the beginning of December last year, it’s had a reboot and is now continuing to go at a great rate. David Burren (AKA Bionic Wookiee) kicked off the chat but is looking for people to volunteer to the moderators’ roster. There’s a brand new Twitter account to follow (@OzDOC_host), but the #OzDOC hashtag continues to shine brightly.

Same #OzDOC time, same #OzDOC channel. (i.e. Tuesdays at 8.30pm AEDT)

And while we’re talking tweetchats…

…make sure you keep an eye out on the #GBDOC tweetchats, which also had a bit of a restart last year and are going absolutely brilliantly. Follow @GbdocTChost for topics and moderators.

Now is a great time for Aussies to participate in #GBDOC because with the time zone difference, the chat is on Thursday 8am AEDT…which is actually quite pleasant. (It all goes to pot and becomes more difficult when daylight saving kicks in/out in respective hemispheres in coming months, but for now, it’s certainly manageable!)

Jane’s profile

It’s no secret that I’m a huge fan of Professor Jane Speight and I make no apologies for mentioning her so frequently on this blog. She is truly a champion for and of people with diabetes and her pioneering work on diabetes and #LanguageMatters, and social stigma are changing the landscape for those of us living with diabetes.

Last week, a profile of Jane and her work was published in The Lancet. Congrats, Jane. I can’t imagine a more worthy recipient of this attention. Please keep on keeping on. I for one am very grateful to have you on our side!

Read the article here – it’s free, but you will need to register/log in to access it.

(Click photo for source)

Dear ‘patient’

I was really interested to read this BMJ Opinion piece about medical letters, with the writers suggesting that instead of addressing ‘report letters’ to referring (and other) doctors and HCPs, that they should be addressed directly to the person, CCing in the doctor who would ordinarily have been sent the letter.

I love that idea! My endo generally copies me in on anything she sends out to my other HCPs to keep me in the loop, but I think that actually writing directly to me is even better.

HCPs would need to completely reconsider the language they adopt, the terminology they use and the overall tone of the communication, and I believe that there is nothing that should be shared with another HCP about me that shouldn’t be shared directly with me.

Interesting idea. And interesting to see if it has legs…

Writing for Grumps

After writing for me a few weeks ago, I returned the favour and wrote a post for The Grumpy Pumper. (I think the deal he made was something like ‘I’ll show you mine if you show me yours’, so I had to come up with the goods.)

This is all part of Grumps’ attempts to get people with diabetes speaking about #TalkAboutComplications in an open and honest way to help reduce the shame that seem to go hand in hand with a complications diagnosis.

Get ready for Spare a Rose spam

This year’s campaign is about to kick off. And if you want to know why I support this campaign, here’s just one reason.

Hospital admissions and T1D study

Rebecca Munt from Flinders University is currently enrolled in a PhD at Flinders University and is looking for participants in her research.

The focus of her study is to explore the experiences of self-management for adults with type 1 diabetes in the hospital setting (when T1D is not the primary admission diagnosis). If you’re interested in participating in Rebecca’s study, have type 1 diabetes, are over 18 years of age and have been admitted to hospital within the last two to five years (not for diabetes), please call Rebecca on (08) 8201 5749 or email rebecca.munt@flinders.edu.au

(The project has Social Behavioural Research Ethics Committee approval from Flinders University.)

Future of medical conferences

I have been very vocal in recent years about the shortcomings of diabetes conferences, specifically the lack of involvement and engagement of people with diabetes as part of the planning, running and presenting of the conference. So this piece really resonated about why medical meetings need a revamp, and some ideas for what could be done differently.

(Click for original tweet)

Because #NothingAboutUsWithoutUs.

Does the story we know and love about Banting need a rewrite?

I was fascinated to watch the short documentary shared in this story which suggests that the frequently-told story of the discovery of insulin is missing out a critical part.

It was the best of times, it was the worst of times…

This blog post by Sue Robins detailing two vastly different medical appointments is compelling – and quite heartbreaking –reading.

More D Merch

Totally true!

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