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It’s been a big week in diabetes…

August 29, 2014 in Advocacy, Conferences, Diabetes, DOC | Leave a comment

I’ve been at the Australian Diabetes Society-Australian Diabetes Educators Association Annual Scientific Meeting this week. It’s been a big few days with some really interesting sessions, terrific opportunities to catch up with people, trying to avoid (unsuccessfully) Conference Hypo Syndrome, and a gorgeous poodle called Gaby.

Today is the final day of the conference and it’s the first ever Consumer Outreach day. I’m really pleased to be spending the day with some inspiring diabetes consumer advocates who are all about promoting the ‘patient voice’.

I’ll be writing about it next week. But in the meantime, it’s Friday and for some reason I’ve had this Tom Lehrer song going through my head. Enjoy!

Interweb Jumble 2

July 31, 2014 in Awareness, Devices, Diabetes, DOC | Leave a comment

So much going on. So much to do. So much to plan. So many presentations to write.

So….naturally, I’m surfing!

BIONIC
I’m still really excited about the Bionic Pancreas. I know that when we hear of new research it’s often about mice, labs, five years’ time etc. So hearing and reading about the ‘real-life’ applications of this technology has been so very exciting. And hopeful. I interviewed someone who participated in the Melbourne trials (you can read about it in the next edition of Conquest). And for another beautiful, goose bump-inducing read about it, here’s what Kerri wrote at Six Until Me.

BLUE CIRLCE APP
A couple of months ago, the IDF launched a new photo app to help raise awareness of diabetes. You can add a blue circle to any photo and then share on social media. Here’s my latest masterpiece:

ZOE BOWIE SINGS
Earlier this year, I sat on a Google Hangout panel with Jamie Tripp Utitis who recently presented at the Doctors 2.0 and You conference in Paris about her beautiful new book ‘Zoe Bowie Sings, Despite All Sad Things’. Jamie wrote this book for kids with a parent with MS. Jamie writes an awesome blog of her life with MS. You can read it here.

WHERE ARE THE PEOPLE?
I threw a huge tantrum let out a huge sigh of defeat when this appeared in my (virtual and real) inbox today. It’s the promotion of a conference in Melbourne later this year about the future of primary care. One of the focuses is patient outcomes. Looking through the myriad speakers what do I find? Not. A. Single. Patient. In. Sight.

SCRIBBLES
Mike Lawson (who I was lucky enough to meet briefly at year’s ADA conference) recently started ‘Scribbling My Life Away’, a blog of his drawings. It’s not really, diabetes-related (although there is the occasional diabetes reference) but nonetheless very cool. (And, Mike, if you’re reading this, can you please do me a scribble of a jar of Nutella and a big spoon. I’d like to put it up in my office?)

SWEET PRETTY THINGS
Totally, completely and utterly not diabetes-related, but I can’t stop looking at the gorgeous artwork of Aussie Illustrator Kerri Hess. I am trying to work out how I could commission a life-size piece that would fit perfectly on a big blank wall in our bedroom.

MEOW
In other news, a cat café opened in Melbourne this week.

CRAZY BIKE RIDING TYPE 1 PEOPLE HEADING TO VIENNA
Last year a group of mad folk with type 1 diabetes rode from Brussels to Barcelona as part of the mHealth Grand Tour. Not content with this achievement, the group known as Team BG, will be doing it all again, kicking off in Barcelona and heading to the location of this year’s EASD conference, Vienna, where I intend to greet them and call them all crazy. I might then buy them a beer.

HAVE YOU REGISTERED YET?
A reminder that TODAY IS THE LAST DAY to get the early bird rate to attend the first ever ADS-ADEA Consumer Outreach program. Book now!

Kinda wordless Wednesday

July 23, 2014 in #dblogcheck, Advocacy, DOC, Social media | 1 comment

Apparently there is more to write about than diabetes. (The photo is blurred, but the book’s title is 642 Things to Write About.)

After a busy #dblogcheck day, I’m not sure I believe that….

Totally irrelevant, but this was taken on a cold Friday night in Readings, Carlton at an in-store performance by local guitarists Paul Carey and Julian Scheffer. Check them out here, just jamming in the kitchen….As you do.

On the Fourth Day of #NDW

July 16, 2014 in Advocacy, Awareness, Diabetes, DOC, Pumps, Social media | Leave a comment

On the fourth day of #NDW, I’m considering the reach of social media and the diabetes online community.

After a friend found herself stranded overseas with a malfunctioning (i.e. dead) pump, she put out a call to her online friends for help using the communication tools of the 21^st century – Twitter and Facebook. In less than 24 hours (the delay was because of bloody time zones!) and after being introduced online to many DOC folks, she has, in her hands (and attached to her body) an operating pump. Social media was the vehicle and members of the DOC from all over the world got on board to help. (Interestingly, or perhaps disappointingly, the pump company proved no help at all.)

And last night, #OzDOC celebrated its second birthday in the best way – with a party-themed tweet chat that brought people together from across the globe. It was fun and frivolous with many laughs – and ’80s song quotes. And mentions of Nutella.

Yesterday, with National Diabetes Week less than half over, I was starting to feel a little burnt out. It was getting hard to see so much diabetes everywhere (says the woman with diabetes, who writes a diabetes blog, is an active member of the DOC and works for a diabetes organisation). It was hard to stay focused on the things that help and the messages that work. It was tough seeing through the murkiness of negative messages. It was getting hard to stay on message!

But thanks to last night’s chat and knowing that my friend has a working pump again, I’m hurdling the negativity and the judgement and moving on. I’m focusing on connectedness. And so – I am sending virtual jars of Nutella to everyone at last night’s chat and to the many people who joined the dots to get my friend a pump. And just like that, I’m back on message!

The PWD are coming!

July 9, 2014 in Advocacy, Awareness, Conferences, Diabetes, DOC | 4 comments

Next month the annual ADS-ADEA Scientific Meeting will be held in Melbourme. This is the leading diabetes conference in Australia and attracts diabetes healthcare professionals from all over the country and boasts a program of outstanding local and international speakers.

This year, for the first time, there will be a consumer stream as part of the conference. This is really exciting because it seems that finally, after many years of petitioning (by petitioning, I mean whining), people with diabetes are actually involved and encouraged to attend.

Details of the Consumer Outreach day are below.

Someone has commented to me on Facebook that registration should be free for consumers and whilst I understand the reasoning behind that, I also know the costs involved in putting on a conference of this magnitude. I also know that sponsorship dollars are tight at the moment. I would urge anyone who wants to attend, but cannot afford it, to contact their local diabetes organisation and see if there is any way they can contribute to the costs.

I also know that having an event during the day on a Friday may not be ideal for many who work. But that’s the reality – conferences are held during the week. If you have any time in lieu owed, or an annual leave day you are prepared to take, this is a great way to spend it! Not only will you get to hear some interesting presentations, but it will be an opportunity to hang out with some incredibly awesome diabetes people.

Peer support for the win!

SCHOLARSHIPS AVAILABLE

#OzDOC will be providing two scholarships to cover the cost of registration for the event. To apply, jump on Twitter and send a direct message to @OzDiabetesOC. Make sure you include your email address in your message. You’ll then receive an application form. See you there!

DISCLAIMER

I am on the organising committee for the Consumer Outreach program. I am not receiving any payment for my involvement in this committee; however, my registration fee for the entire conference has been covered. I am also an invited speaker at the ADS-ADEA conference (at both the healthcare professional and consumer sessions and I have been involved in the submission of two abstracts that have been accepted for presentation at the conference).

Divided

July 4, 2014 in Advocacy, Awareness, Diabetes, DOC, Social media, Stigma | 6 comments

It’s been a big week. Of advocacy and misconceptions and stigma and messages getting lost.

DessertCalledDiabetesGate was exhausting and the wash up of it for me is really just how disappointed I am in the whole situation.

This post is not about trying to keep the issue alive – especially given that when I wrote about it on Tuesday I was suggesting we all just walk away. In fact, this post isn’t really about the café and the dessert at all.

No, this post is about how we, as a community, dealt with the situation and how, in my opinion, many of us got it wrong. And because we got it wrong, our real message was lost.

While many people asked the café politely to change the name of the dessert and were able to articulate the reasons why, many others got defensive and aggressive. Some attacked the café, others attacked individuals who disagreed with their stance. It got ugly at times – very ugly. Our community went from looking like people genuinely concerned about trying to stop stigma about our health condition to a bunch of wowsers.

And from there, it was a short leap to ‘Australians can’t take a joke anymore’ and ‘it’s political correctness gone mad’. Our community was attacked on Facebook, in the comments sections of news articles and on television. Studio 10 picked up the story and the show’s panel discussed it. Thanks to Jessica Rowe for being the voice of reason on the show who tried see the situation from ‘our’ side.

But that’s where the message got lost. It stopped being about diabetes. Instead, it became about people needing to lighten up and have a laugh. I laugh at myself and MY diabetes all the time. But I don’t do it at the expense of others. I would never make a joke about someone else’s medical condition or someone else’s diabetes.

We need people to understand why it’s not okay to call a dessert diabetes. We need people to understand the hurt and the stigma they are contributing to when they use this ‘humour’. We need people to understand that it’s not that we can’t laugh at ourselves – it’s just that we are a little sick of the misconceptions out there about diabetes.

We can’t get the wider community to understand our side when we get abusive or aggressive or get our messages mixed up. We can’t successful advocate anything if we can’t do it collaboratively, evenly and calmly. This doesn’t mean that we all need to agree – clearly there were some people who couldn’t have cared less about this particular issue – and that’s fine!

United we stand, divided we fall. This week, on this occasion, I believe we fell. Quite spectacularly.

There’s lots coming up in the next few weeks and if you live in Melbourne, you may be interested in these couple of events. These events are all run by Diabetes Australia – Vic. (I’m employed by DA – Vic, but they have not asked me to promote their activities here. I’m doing it simply because the events are great and people should try to get along if they can!)

Smack bang in the middle of National Diabetes Week, Diabetes Australia – Vic is hosting a movie evening where we’ll be showing a film called Sweet 16. It’s free, but bookings are essential. Here are the details.

If you are aged 18 – 25 years and live with type 1 diabetes, check out Connect – In – also coming up in July. It’s a weekend full of information and social activities. Details here – book quickly!

The latest in type 1 diabetes research and technology will be covered at the annual Research Revealed event on 26 July. Book now!

Hope you all have a great weekend. Here’s some Alicia Keys for your Friday and for my New York dreaming and planning.

Asked and answered

July 1, 2014 in Advocacy, Awareness, DOC | 5 comments

I am all for a clever joke. Smart puns have me smiling wryly – and feeling a little envious, generally because I’m not intelligent enough to come up with them. Clever satirists and humourists are wonderful because they make us laugh and think at the same time.

But I am not for lazy, insensitive humour that adds to the stigma of diabetes (or any health condition for that matter).

A link to this showed up in my inbox yesterday:

I’ve removed the name of the café, because, quite frankly, I don’t want to give them any publicity. I left a polite comment on their Facebook page suggesting that they help stop diabetes stigma rather than contribute to it and change the name of the (rather yummy-looking) dessert.

When I left my post, there were a few little comments suggesting that perhaps the name was a little insensitive. At that time (about mid-afternoon), there were 33 comments after the photo of the dessert – most of them saying how delicious it looked with a couple of detractors asking the name of the dessert be changed. There was nothing abusive – nothing rude at that point. I then tweeted the café, pointing to the offensive name of the dessert, and shared the photo on my Facebook page, suggesting that people leave a polite comment on the café’s page about why such behaviour is stigmatising to people with diabetes. By 9.00 last night, there were over 180 comments after the photo as well as many ratings and stand-alone comments – all negative.

Here’s the thing. The post was stupid. It wasn’t funny.

But neither were a lot of the comments that followed. Threatening legal action (Really? For what? Bad humour?) does us no favours at all. Also, I couldn’t help thinking ‘pot, meet kettle’ at several commenters who were claiming the café was stigmatising diabetes – only to then add further misinformation with a ‘type 2s cause it themselves….’ type remark. Sigh.

Yesterday was Social Media Day and this exercise was an outstanding example of just how effective social platforms can be at getting messages across. It wasn’t a great day for the café – they received a lot of negative comments on their page. But they have dealt with it correctly.

This morning, the café issued an apology and have renamed the dessert. Their apology was short, to the point and generally fair. It would have been more endearing promising to make a donation to a diabetes organisation, but it’s a start. (Even MORE endearing would be finding a way to send me one of those desserts, because, yes, I can eat that!)

The café’s Facebook page looks significantly different today. All negative comments from yesterday have been deleted, and the ratings function has been disabled. Should they have removed the negative comments and stopped allowing ratings on their page? Social media 101 would say no, but I guess that is up to them to decide.

So what do we, the diabetes community, do now? Acknowledging the apology is important here, and so is moving on. Many people have said ‘not enough’ and continued to be angry and abusive. I think it is enough. I don’t believe for a moment that naming a dessert ‘diabetes’ was done with any malice at all. It was stupid and careless. But there is no way that it was a personal attack on those of us living with diabetes. But there is definitely room for a discussion about why diabetes continues to be seen as fodder for bad jokes, and mindless behaviour like this. Until we get the language about diabetes right, this will continue to happen. Again. And again. And again. That is the discussion I’m interesting in having now.

For now, our point has been made; the café listened to our request that the name of the dessert be changed. Walk away; there’s nothing to see here any more.

UPDATE

Just after this blog was posted, I was interviewed by Fairfax Media journalist, Rose Powell. Her article appears here.

Following on from this post, which I believe is quite gracious in its treatment of the cafe, I was disappointed to see the site has been flooded with positive comments – many of them incredibly offensive to people living with diabetes. The cafe has, in my opinion, undone its good work by allowing these comments to remain on their Facebook page.

Interweb jumble

June 25, 2014 in Advocacy, Awareness, Devices, Diabetes, DOC, Social media, technology | Leave a comment

One of my favourite websites is Messy Nessy Chic. This is a site full of whimsy and fun and the completely unexpected. And each week, there is a list of 13 things I found on the internet today.

This is my all-time favourite find on this site and I’m still trying to work out how to buy them both, ship them to me and spend my days driving around in them, wearing a flowery dress and scarf in my hair.

In my internet wanderings lately, I’ve found a few things. They are nowhere near as quirky or quaint. But nonetheless, I thought they were worth a share.

OVER TO YOU, MS SPARLING

Kerri Sparling needs no introduction to the diabetes blogging world. She keeps on getting better and better and better (and publishes a book!) and then goes on the telly and does this.

It’s all perfect, but for me this was the line that resonated most: ‘Patient stories are the new wave of advocacy’. Yes, they are! Thanks, Kerri.

TYPE 1 MYTH BUSTING – QLD STYLE

This isn’t really new – in fact it was launched on WDD last year. But just in case you missed it, D-QLD has this great campaign busting myths about type 1 diabetes.

IT’S NOT JUST DIABETES

The annoying things we face as people with diabetes translate to other things as well. I was sent a link to this gorgeous blog. It’s written by a mum who has a child with Autism. Her post ‘What not to say to someone who has a child with autism’ is brilliant. This is my favourite part:

If I tell you Poss is on the Spectrum, the appropriate response is not “I’m sorry”. I know it may feel like it’s the right thing to say, but chances are, if I’m telling you, it’s because you need to know – not because I’m after your sympathy. Instead maybe say “ok – what do I need to know?”.

That thing about wishing that we could legislate against stupidity? It goes far beyond people who say inconsiderate, insensitive, offensive things about diabetes.

DIABETES REVERSED IN MICE

Whatever.

PLEASE FORWARD MY BIONIC PANCREAS ASAP

But THIS! If you’ve missed it somehow (get out from the rock!) there’s been lots about the bionic pancreas all over the interwebs. I spoke about it on the radio.

And here’s a blog from someone who was on the trial.

WEARABLE DIABETES STUFF

Apple (et al) are going to make a diabetes watch! Or something. It’s exciting, although I’m not sure that it will ever really be their core business (see what I did there?). Anyway, we’ll see if Apple get there first, or if Samsung or Google pip them at the post (and there?). I don’t have in-cider information (I’m done), but hopefully, this is something that will be for real in the next few years. (Thank you! I’m here until Friday; try the chicken.)

Today’s post is dedicated to Jane, who sent me the link to About a Bugg, and recommends you try the veal rather than the chicken.