Diabetes Australia

That Time I Was In The Newspaper

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A few weeks ago, I agreed to be a media ambassador for Diabetes WA’s National Diabetes Week campaign. If you’ve been living under a rock this week, the campaign is calling on earlier detection of the signs and symptoms of diabetes.

Obviously the urgent and life threatening nature of type 1 diabetes is what picked the Editor’s interest the most, and I was told that The West Australian newspaper was interested in running a story. This is despite Diabetes WA’s media release providing equal attention to type 2 diabetes. (However, I do not know if the person with type 2 diabetes profiled in the release was prepared to do media).

The West Australian, in my opinion, are notoriously bad. The quality of journalism, in my opinion, is absolutely terrible. Unless you regard AFL footballers, Channel Seven personalities and Channel Seven television programs as news. The last diabetes article I read had the headline ‘cash strapped diabetic sufferers.’

So, it’s safe to say that I was feeling my fair share of nerves as I opened that newspaper to read how the story was covered yesterday morning.

I found out that The West were planning on running this story last Tuesday. The Editor left me a voice message late on Friday, which I promptly responded to with another voice message outlining my availability and willingness to chat. After a few SMS exchanges a day later, a photograph was arranged for Wednesday morning during Diabetes Research WA’s event for National Diabetes Week.

I was so looking forward to getting a professional photograph done, and jokingly told the photographer to make sure that I was smiling. I like to call myself Chandler Bing, because I always think that I am smiling during a photograph, only to see a very serious looking end result. I was also looking forward to getting a cheeky Instagram of me being photographed, and was bitterly disappointed to be told that I wasn’t allowed to.

We made our way across the road to the beautiful Lake Monger reserve, overlooking the city skyline and glorious Perth sunshine. Instead, the photographer placed me into the bushes, stuck a camera onto one of the trees and told me to walk toward him while looking sideways at this camera. I was then asked to go back and repeat the exercise, this time looking forward at him.

“Shouldn’t I be smiling?” I asked after realising that this was not a warm up exercise but the real thing.

“Isn’t this supposed to be a really serious story?” He replied.

After taking a few photos of me smiling, purely to humour me, our exercise was over.

As I made my way back toward the event I was attending, I expected that the Editor did not plan to ring me as she had said and that I would not have a chance to deliver some key messages on language.

I knew that I would have to get in touch with her and politely deliver the two key messages I had developed from some crowdsourcing during Tuesday night’s OzDOC chat, along with a copy of Diabetes Australia’s Position Statement on Language and Diabetes. I didn’t even care if my message didn’t get through, I only knew that I wouldn’t be able to live with myself if I hadn’t seized this chance to put my case forward.

As expected, I received a pointy email response back highlighting this Editor’s 25 years of medical writing experience. After somewhat defensively being told that terms such as ‘diabetic sufferers’ aren’t used, I had a suspicion that my message had gotten through.

Back to that moment where I was a bundle of nerves, flicking through the pages of that newspaper yesterday morning. Despite the serious photo, I couldn’t be prouder of the outcome.

‘Diabetic sufferer’ is nowhere to be found!

Its About Time…To Raise Awareness of Diabetes!

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This week, I’ve been lending my voice to Diabetes Australia’s National Diabetes Week campaign that is calling on earlier detection of both types of diabetes. It is a campaign that I am really, really proud to support.

As a person living with diabetes, previous campaigns have been difficult to stomach. They’ve often focussed purely on the serious side to diabetes. While these campaigns understandably carry a political agenda for things like greater funding and improved outcomes for people with diabetes, they often lack one crucial element. Audience participation from people with diabetes.

People with diabetes want nothing more than to raise awareness of diabetes during diabetes week. What I love so much about this year’s ‘Its About Time’ campaign (and last year’s, for that matter), is that it hits the right balance of seriousness while also encouraging those of us living with diabetes to raise our voices and promote greater awareness of diabetes.

The type 2 campaign launched on Sunday, calling on everyone at risk to get their diabetes screenings, regular bloodwork and checkups with GPs. This is especially true for those over the age of 40, those who may have a family history of diabetes, those with a waist measurement of over 40 inches and many others. If you know someone who might be at risk, encourage them to get their diabetes screening! There’s also a free calculator that will help you to assess your diabetes risk here.

People can live with type 2 diabetes for up to seven years before it is diagnosed. The onset of symptoms are relatively slow compared to type 1, and many people still feel normal until the condition has progressed further and complications may have developed. Most of these complications would be preventable with earlier detection.

The type 1 campaign launched today, calling on everyone to know the four ‘Ts’ of type 1 diabetes – Tired, Toilet, Thirsty and Thinner. 1 in 5 people are still presenting to hospital in a life threatening state of Diabetic Ketoacidosis (DKA) before being diagnosed with type 1. DKA and hospital admissions could be prevented with earlier detection of the four Ts from both our peers and our healthcare professionals.

One common argument that I see in the diabetes community, and one that I’ve certainly been guilty of in the past, is that type 2 diabetes takes focus away from type 1.

I see this campaign as something that brings the whole diabetes community together.

I think we can all agree that no matter the type of diabetes we have, we would all benefit from earlier detection. However we were diagnosed, I think many of us would still be able to find something small that could have been done better through a greater awareness of those signs and symptoms.

I truly believe that Diabetes Australia are doing a fantastic job at championing people with diabetes. Perhaps I am slightly biased as I have been involved with them in the past, but I truly believe that this is a brilliant campaign.

Let’s shout diabetes awareness to the rooftops!

Fellow people with diabetes, this is our week!

The 4Ts of Type 1 Diabetes

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Happy National Diabetes Week! This year, it’s once again all about raising awareness of the signs and symptoms of both type 1 and type 2 diabetes. I know that I’ve been critical of diabetes campaigns in the past, but hit play and let me tell you why I think this a really good one.

(If you listen carefully, you might even be able to hear the whirl of the washing machine in the background…)

Diabetes Advocacy at #DX2Melbourne

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One of the speakers I was most looking forward to hearing from at DX2Melbourne last week was Greg Johnson, CEO of Diabetes Australia. Professor Johnson was leading a session on diabetes advocacy, and I was thrilled that he would be engaging with a room full of consumer advocates.

Professor Johnson talked about the history of diabetes organisations in Australia (with a book of the exact title in tow!), with a movement by people with diabetes, for people with diabetes. Many of the original goals around patient centred care remain the same today, suggesting that we may have to reinvent our approach towards them.

At the time there wasn’t much of an understanding of the psychological aspects of diabetes. Establishing the Australian Centre for Behavioural Research in Diabetes (ACBRD) in 2010 was a big step towards helping better understand those elements and improve the quality of life for people with diabetes.

He highlighted the importance of the National Diabetes Services Scheme (NDSS), which is responsible for the delivery of subsidised diabetes consumables here in Australia. There were 106,000 newly diagnosed people with diabetes registered on the NDSS in the past 12 months. 9,000 people didn’t fit within type 1 or type 2 diabetes, while a further 37,000 were diagnosed with gestational diabetes.

He talked about advocacy, most notably the win on securing funding for Continuous Glucose Monitoring from the federal government in under 21s. This election promise was finally delivered when new Federal Health Minister Greg Hunt took over the role earlier this year. Many consumers didn’t realise the years of groundwork that went into achieving the outcome we have today.

How do we, as advocates, get out out there and create change?

How do we empower the consumer voice, and lived experience?

There’s a real need for us to come together, listen to many different stakeholders and advocate for ALL.

There’s a lot of frustration from people with diabetes who are still seeing shaming messages from diabetes organisations.

People don’t feel empowered to raise awareness and seek out communities.

These were just some of the questions and comments raised by the attendees in the room. Despite some robust discussion among the advocates, I didn’t feel that I got many answers to those questions during that session.

Sitting amongst some of the most influential diabetes advocates in the country, I was itching to know what I could do to help bring about change. I wanted to know where consumers sit in the scope of what Diabetes Australia is trying to achieve.

To be honest, I often feel frustrated by communications from diabetes organisations. When I think about what people with diabetes are doing in the real world – chatting in closed Facebook groups, writing powerful blog posts, reading the scoop on the latest tech, sharing opinions and organising amazing events and meetups – these things often feel ignored, rather than supported.

Professor Johnson rounded out his talk by saying that advocacy doesn’t end once a decision is made, and that we have to keep working with people to create change.

I feel that revisiting the level of engagement with consumers would be a powerful way for diabetes organisations to bring about further change.

Disclosures: Abbott Diabetes Care covered my travel expenses from Perth to attend this event. Further disclosures can be found at the bottom of this post.

Time to Rethink National Diabetes Week?

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As I watched the response towards an amputation-themed National Diabetes Week escalate late last week, I’ve been thinking about my own stance on Diabetes Australia’s campaign. I made my opinion clear though my vlog last Monday (which you can watch here), and have steered clear from most of the conversation since. While it was disappointing to see some of the commentary getting out of hand, it will not make me feel any less guilty for having an opinion of my own. 

Diabetes Australia advocates for the language used when talking about diabetes, and for the way it has the power to shape our thoughts, beliefs and behaviours. I support this wholeheartedly – both online and off. To quote Diabetes Australia’s Language Position Statement:

“Language needs to engage people with diabetes and support their daily self-care efforts. Importantly, language that de-motivates or induces fear, guilt or distress needs to be avoided and countered.”

I can’t help but feel that a campaign focussing on diabetes amputations does induce fear, guilt and distress, and contradicts this language position statement. Two diabetes educators in our community even went further to suggest this:

“In my practice I’ll be working with newly diagnosed and people who have had diabetes for years and dealing with the heightened anxiety that comes from the strong messaging around this. Powerful messaging can do more harm than good and many people choosing this style of awareness campaign are often not at the clinical coal face dealing with the aftermath” – Ann Morris, Facebook.

“Diabetes distress is real and palpable when people talk about their fear of complications – especially in relation to the fear of foot or leg amputation. Fear is further fuelled by the negative campaign being run in this year’s Diabetes Awareness Week. We shouldn’t be surprised if they disengage about their risk or move to a default mode of thinking that they are ‘here for a good time not a long time’, then adopting behaviours that increase complication risk.” – Jayne Lehmann, Ed Health Australia.

Diabetes Australia admirably responded to some of the criticisms of the campaign in a Facebook post on Friday afternoon, which you can read here.

Diabetes Australia were campaigning for a Diabetes Amputation Prevention Initiative from our government to help prevent 85% of diabetes related amputations each year through early detection and proper care. We were also told that the campaign was not really about the person with diabetes, but to help make the broader public more aware of this issue.

While I don’t doubt the seriousness of this issue, I do question whether a very public National Diabetes Week campaign was the appropriate avenue for this lobbying. People don’t know enough about diabetes. People don’t know enough about what it is, what it entails, and how to best support those of us living with the condition. This was supposed to be our week, where we raise awareness and be proud of the condition we live with. A campaign focussing only on one issue – a negative one – does not achieve this. It only creates stigma.

I blogged about National Diabetes Week positively. I vocalised my feelings about the campaign with those around me. I enthusiastically followed the #NDW16 hashtag on Twitter all week. Yet from what I saw, very few people were actually jumping on board. Yes, there were plenty of automated-looking tweets from diabetes and health-related organisations. There were some retweets. However I saw very few people actually jumping in and talking about it.

Diabetes Queensland and Diabetes Victoria were both calling for submissions to their Diabetes Life Hacks and Diabetes Won’t Stop Me campaigns, and I don’t feel that either gathered the momentum they deserved in terms of social media engagement. I would go as far to suggest that even these more positive campaigns were overshadowed by a negative national theme.

Watching many passionately vocalise their feelings (some inappropriately) towards the campaign on Facebook, I couldn’t help but wonder what the outcome would have been if the campaign were a positive one. 

Okay, so the theme was foot health. The underlying message was to look at and take care of your feet. Why not set up a few booths across the city where people could get their feet examined for free? The CBD, universities, shopping centres, etc. Create a cool hashtag, and encourage people to post photos on social media as they’re getting their feet examined. Make an event out of it, and give people something to remember when it’s time for their next foot check.

I thought Diabetes NSW were onto something by staging a Guinness World Record – it’s just a shame that they went with “Standing on One Leg,” which seemingly made a mockery of amputees. 

I personally did not like the theme of this year’s National Diabetes Week. And if the response on social media is anything to go by, Diabetes Australia will need to reconsider their messaging in 2017.