The challenges of diabetes support around Australia

I spent the end of last week in Perth, WA and it was a particularly memorable trip for me. Firstly, after almost 4 years  I can say that I have visited each of the state institutions of Diabetes Australia. But secondly, I now fully understand the challenges that those living in rural and outback locations face, primarily due to limited access and support.

Western Australia occupies 2.5million square kilometres with a density of 0.95 people/km² – that’s less than one person per square kilometre! The sparse density of the state makes challenging work for Diabetes WA to ensure that everyone affected by diabetes has the access to the support they need. I admire the work that they do to make sure that they can help as many people as possible through communications and supply.

The reason for my business trip was to attend the FYI Series 2014 Corporate Lunch, held at a Kings Park in Perth. It was a gathering of over 250 individuals, from commercial relationships to support group leaders – it was a real diabetes community!

I was there to represent the Victorian arm of Diabetes Australia and was joined by other key leaders in the Australian diabetes community – National CEO Greg Johnson, DA-NSW CEO Sturt Eastwood and Diabetes Australia’s President, The Hon Judi Moylan. It was an excellent opportunity to listen to the key note speakers and to help raise awareness of diabetes amongst these groups. I left, as I often do on work trips, feeling empowered to make a change. The gathering of these people in one room demonstrated the interest and determination to raise awareness of diabetes across Australia. Diabetes is a huge health burden that I (and all of you reading this blog) are at the centre of vehicle to drive change because we know the facts. We care. We want to shape the future.

I hope that all those who attended the lunch also left feeling passionate and determined to make a difference. They can start in many ways, whether it is checking their risk of type 2 diabetes (http://www.checkmyrisk.org.au), encouraging friends and family to do so, or making a donation to Diabetes Australia. Together, we can reduce the impact of diabetes.

Michael Goldman

Michael Goldman is Deputy Chief Executive Officer at Diabetes Australia – Vic. You can follow him on Twitter @MGoldman_ the thoughts and opinions expressed in this blog are his own.

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Reflections on Sweet 16 the movie

Eliza Nolan is DA–Vic’s Program Events Officer and also lives with type 1 diabetes. During National Diabetes Week she attended DA–Vic’s screening of Sweet 16: A journey into teen diabetes which made her reflect on her journey with diabetes.

sweet 16 27x40 FINAL print
This is a film worth watching. It’s worth watching if you have type 1 diabetes, it’s worth watching if you’re a parent of a child with type 1 diabetes, it’s worth watching if you know a person with type 1 diabetes. It’s no action packed, rom-com, thriller, but an understated and realistic documentary into type 1 diabetes from a range of valuable perspectives.

What hit me most was the strain on the parents. This might seem strange considering how hard it can be to live with diabetes – I am a person with type 1 diabetes and it often batters me around. However, I loved this film and its insight because it showed the strain that this quite invisible condition puts on everyone, not just the person living with type 1.

It was also great to have some of my own feelings about diabetes articulated and mirrored it the film. Katia says two things that struck a chord with me. The first one I want to scream from the rooftop to everyone who has diabetes, of either type – if someone has a problem with you because you have diabetes, or an insulin pump, or do injections – you wouldn’t want them, and don’t need them, as a friend anyway! People who treat you differently because of your diabetes don’t deserve your company, their reaction reflects on them, not you.

The second thing that struck me from the film was the quote: “(diabetes) it’s so big, but you can’t see it.” Until quite recently I hadn‘t seen my diabetes as a big part of me. The older I get, the more I realise how it impacts on my health, mood, sleep, and overall life – it’s huge!  It penetrates every facet of our lives and does not go away. This is where I’ve found support and perspective is so important. In Sweet 16, Katia finds this support, love, personal acceptance and perspective through her admirable work overseas. It allows her to realise she is bigger than her diabetes, and in a number of ways she is, and all of us living in a well-developed country with a decent health system are, ultimately lucky.

This is just part of what the DVD opened up for me. It’s raw, real and at times awkward ‘protagonist’ really does the world a favour by opening up about her private experience. This DVD hits a niche market of people who suffer from a number of associated difficulties thanks to diabetes but also have the ability to live life to the absolute fullest (with a tad more planning).

It was wonderful to see the cinema packed out for DA–Vic’s Screening of Sweet 16. Support groups, diabetes camps and other ‘diabetes’ events are rarely about sitting and talking diabetes with other people with diabetes but this was about being in a space with people who inherently and utterly understand a part of you in a way that no one else can. There is a sense of belonging. This screening provided this space for attendees and their families, and I’m pleased to say that the feedback collected was glowing.

Watch the trailer:

Sweet16 documentary trailer from dan shannon on Vimeo.

Posted in children, Diabetes, Health, National Diabetes Week, stigma, Support, type 1, Young people | Leave a comment

Together we’re united for diabetes

NDW homepage banner sharkyNational Diabetes Week this year focusses on the prevention of type 2 diabetes through an interesting campaign. Diabetes Australia uses images to represent people’s irrational fears such as clowns, spiders and sharks and compared it to the real and hidden threat of diabetes. So it absolutely made sense that the launch of this campaign was done at the Melbourne Aquarium! Therefore, it’s only fitting that this post will feature happy shots from the aquarium!

Professor Greg Johnson, CEO of Diabetes Australia launching the new campaign.

Professor Greg Johnson, CEO of Diabetes Australia launching the new campaign.

Did you know that more than 2 million Aussies are at high risk of developing type 2 diabetes? Some people may scoff at this. But when one in three people don’t even know they are already living with diabetes, it’s pretty scary.

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Is the prevalence of diabetes as scary as a huntsmen though? (no…um…yes…um…maybe?)

You can check your risk for type 2 diabetes at checkmyrisk.org.au. It’s important to note that this is not a direct predictor for developing (not contracting) type 2 diabetes. Even if you are at low or no risk, it definitely doesn’t mean you’re immune from it. Trust me, I know from experience!

Are lizards immune from diabetes too, I wonder?

Are lizards immune from diabetes too, I wonder?

Not being aware or looking after your diabetes can have serious implications. All the negative things associated with diabetes such as amputations and loss of sight becomes much more of a reality.

According to some, caring for your diabetes can be compared to looking after a child!

According to some, caring for your diabetes can be compared to looking after a child!

Diabetes isn’t all doom and gloom. The sooner you put things in place to manage your diabetes, the risk of complications generally reduces too. There are also increasingly more support networks for people living with diabetes. You are never alone.

No matter what your connection to diabetes is, you are not alone.

No matter what your connection to diabetes is, you are not alone.

This campaign is targeting those at risk of type 2 diabetes. But healthy eating and exercise doesn’t just benefit people with pre-diabetes. It benefits EVERYONE.

Don't ignore your weight!

Don’t ignore your weight!

National Diabetes Week, to me, means that we put side our differences to work together. We are here to help each other out. Together we are one voice to fight against the discrimination and the stigma that has been fanned by misinformation and through the media. Together, we are united for diabetes.

Together, we can make a difference!

Together, we can make a difference!

Ashley Ng, of Caufield, is 24 years young. Ashley was diagnosed with diabetes in 2009, and blogs more regularly at Bittersweet Diagnosis. This post was re-blogged from Bittersweet Diagnosis after consent from the author.

The opinions and thoughts expressed in Ashley’s occasional blogs are her own.

Posted in Diabetes, National Diabetes Week, nutrition, obesity, physical activity, prevention, stigma, type 1, type 2, Young people | Tagged , , , , | Leave a comment

Keeping it nice

NDW homepage banner sharkyIt’s the Friday before National Diabetes Week here in Australia. Over the next 10 days, diabetes will be in the press. A lot. And that means a lot of misreporting and a lot of people saying the wrong things about diabetes.

So, here are some of my thoughts about how to address this:

  1.     Stay calm. If you hear or see or read something about diabetes that is incorrect, don’t get angry. Send a balanced, calm response to the journalist, radio/TV station/person talking with CORRECT information. Be brief, use facts – dot points are good.
  2.     Know your facts! And that means no perpetuating other myths to bust the one that’s pissed you off.
  3.     Get over the type 1 versus type 2 thing. Seriously. Don’t bash the ‘other’ diabetes.
  4.     I send the Diabetes Australia Language Position Statement out to any journalist who uses damaging language when writing about diabetes. I tweet the link directly to journos all the time!
  5.     Naming and shaming is okay if you’re nice and polite about it.
  6.     Don’t engage. Make your point and walk away. There is no need to enter into an argument that will most likely get heated and result in abuse. Grace and dignity are amazing qualities; demonstrate them in spades!
  7.     Action! If you’re going to complain, make sure you actually do something meaningful with it. It’s all very well to bitch and moan amongst your peers, but find the source of whatever has upset you and write to them directly. (See point 1 for the tone to use.)
  8.     Follow up. And if you do take the time to write, you should expect a response. If you don’t get one within a reasonable time, re-send your correspondence.
  9.     Pick your battles. I can tell you now that no one has bucket loads of money to spend on diabetes campaigns, so no matter how much you want the government or diabetes organisation in your state to run a full-blown campaign explaining the difference between type 1 and type 2 diabetes, it’s not gonna happen. Accept it!
  10.     Remember that you know a lot about diabetes out of pure necessity. Don’t expect that same level of knowledge from everyone. Most of the stupid things people say are out of sheer ignorance or bad manners. Politely correct and move on.
  11.     There are some great resources out there that can help. Check out this and this.

The primary aim of National Diabetes Week is to raise awareness of the condition – specifically awareness about prevention of type 2 diabetes. Consider any misreporting or silly comments an opportunity to provide information and education in the hope that the people perpetuating the myths won’t do it again. And as your (and everyone’s) grandmother would say: Keep yourself nice.

It’s Friday! And it’s freezing here in Melbourne. I’m trying to imagine warm sun on bare skin, so here are The Beatles with ‘I’ll Follow the Sun’.

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

Renza blogs regularly at Diabetogenic about real life with type 1 diabetes and you can also follow her on Twitter @RenzaS This post was re-blogged from Diabetogenic after consent from the author.

Posted in Diabetes, facts, National Diabetes Week, stigma, type 1, type 2 | Tagged , , , , , | Leave a comment

Pumping on Diabetes Camp

A few weekends ago marked a milestone for pumpagotchi and I. We went on a trip that was longer than an overnight stay. We went on a diabetes camp together. That’s four days and three nights away from home.

Being the coordinator of this camp, I was counting on my diabetes to behave nicely while I made sure everything ran smoothly. I needed to do a site change on the second day of camp. So I packed an infusion set. I always carry my insulin pen and a needle around as a back up. However, I had forgotten to check if I had enough insulin in my pen! It was only by a slim stroke of luck that I decided and remembered to throw in a spare vial of insulin. I also had not even considered the possibility of doing a dud line change. In hindsight, I should’ve packed an extra infusion set just in case!

Luckily everything did run well. My sugars were running a little higher than normal probably due to the stress and excitement and the constant eating that is diabetes camp. The only issue I ran into was my pump falling out from my pocket while I was running around doing a parachuting activity with the kids. Running around with a dangling a pump isn’t very fun. Next time, I’ll have to find a more secure place to put it if I decide to get involved. But I wasn’t too nervous about any diabetes emergency I may come across as I WAS at a diabetes camp. Having several well experienced diabetes nurse educators, people with diabetes and an abundance of spare diabetes supplies such as meters, test strips and needles definitely gave me a peace of mind.

Despite the terrible weather, the camp ran really well. We had children from 4-8 years old with one parent and ran activities with the kids while parents attended informational sessions with health professionals. I learned about this whole loom band craze the kids are into and also mused over toilet tiggy (where did this even come from and how did it get so big?). After hearing one of the kids repeatedly saying that ‘this is the place where fun never ends’, I think it’s safe to say that everyone got something positive out if it. Here’s to another smooth sailing camp this weekend with nicer weather.

Sunset view over our campsite

Sunset view over our campsite

Loom band madness!

Loom band madness!

For more information about Diabetes Camps Victoria, please visit their website here.

Ashley Ng, of Caufield, is 24 years young. Ashley was diagnosed with diabetes in 2009, and blogs more regularly at Bittersweet Diagnosis. This post was re-blogged from Bittersweet Diagnosis after consent from the author.

The opinions and thoughts expressed in Ashley’s occasional blogs are her own.

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Aboriginal health is very important to us

This week is NAIDOC week. NAIDOC week is a time to celebrate Aboriginal and Torres Strait Islander cultures, and is a great opportunity to recognise the contributions that Indigenous Australians make to our society. Thanks to the hard work of our Aboriginal and Cultural Diversity team, staff at DA–Vic will be able to get involved this week in some special activities, including a visit to Federation Square for the flag raising ceremony, a NAIDOC Week quiz (with a great prize of movie tickets for the winner!) and a morning tea at each DA–Vic office where Colin Mitchell, our Aboriginal Liaison Officer will talk about the importance of NAIDOC week, and the winner of the quiz will be announced.

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Aboriginal health is very important to us at DA–Vic, because we know that Aboriginal and Torres Strait Islanders are 3–4 times more likely to develop diabetes than the national average. Colin does a great job raising awareness of diabetes to Aboriginal communities across Victoria. But it can’t just be Colin’s responsibility. Aboriginal health is everybody’s business, and at DA–Vic, we are trying to increase our cultural awareness and activities across all areas of the organisation.

We recently completed an Aboriginal Cultural Audit where we rated our performance across areas such as planning, people and partnerships. I know this process well and feel that it is a great way to reflect on what we do and what we can do better.

For me, the audit was also a time for personal reflection. We were shown a video clip of an Aboriginal man speaking about his life, and the impact that the Stolen Generations and colonisation have had on him. It was a powerful reminder of the importance of family and Country to Aboriginal communities, and the effect that dispossession has had on their health and wellbeing. Diabetes is one consequence of this, and it’s our job to try and bridge the gap in diabetes health inequality. I was delighted that DA–Vic rated well in many areas of the audit, but there is still much work to do. We have drafted an action plan of things we need to do to improve our work in Aboriginal health, and I’m really looking forward to working on this with the group of committed staff from all areas of the organisation who sit on our Diversity Working Group.

Read more about our Aboriginal and Torres Strait Islander Program

Carolyn HinesCarolyn Hines is the Diabetes Education Manager at DA–Vic. The opinions and thoughts expressed in her occasional blogs are her own.

Posted in Diabetes, Health | Tagged , , , , , , | Leave a comment

Asked and answered

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:

CAKERENZA

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. 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?) or using abusive language does us no favours at all. Being rude does not get our point across at all. Also, I couldn’t help thinking ‘pot, kettle, black’ 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.

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. Even more endearing would be making 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 comments from yesterday have been deleted, and the stand-alone comment/post by anyone function, along with the ratings function have been disabled. Should they have removed the negative comments and stopped allowing people to comment on their page? Social media 101 would say no, but that is up to them to decide.

So what do we, the diabetes community, do now? Acknowledging and being grateful for the apology is important here. I’m kinda disappointed that many people have said ‘not enough’ and continued to be angry and abusive. But actually, 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

Here is where we should be gracious and simply move on. 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. Read her article.

Following on from this post, which I believe is quite gracious in its treatment of the cafe, I was disappointed to see that all comments that were in any way negative were removed from the cafe’s Facebook page. The site was then 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.

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

Renza blogs regularly at Diabetogenic about real life with type 1 diabetes and you can also follow her on Twitter @RenzaS

This post first appeared at Diabetogenic and has been published here with the writer’s consent.

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