Advocacy

Outside the Bubble.

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“Diabetes! Diabetes! This way!”

The lady behind the counter was shouting and gesturing wildly as I entered the rec centre for an evening on exercise and nutrition put together by my fellow Young Adult Diabetes Committee members.

The YADC came to life a year ago and has since grown into a vibrant community of young adults living with diabetes, who are predominantly type 1s. As I found myself explaining to someone in attendance that night, this group really came about to fulfil a need that was currently missing in the Perth community.

As I took a seat and the evening’s proceedings kicked off, I found myself mentally nodding as I heard concepts being explained by our guest speakers that I was all too familiar with.

I looked around the room, glancing at some of the other people with diabetes and their loved ones in attendance. I observed many of them listening attentively, taking in all of the information they were hearing or jotting it down in note form. My own two parents were sitting behind me, and I wondered how easy this information was for them to take in.

They know the concepts behind managing type 1 diabetes quite well. At home, I find myself talking a lot about some of the exciting developments I read about in the DOC, my advocacy activities and diabetes related travel.

However, I’ve always been very independent in the physical management of my condition. I don’t bother them with all the nitty gritty stuff, like trying to figure out the best time to bolus for a high fat high protein pub dinner when my blood sugar is x mmol.

The evening broke off into group sessions, where I found myself chatting with some of my fellow type 1s in the room. It was nice (but also saddening) to hear other experiences in public hospital diabetes care that mirrored mine, while there were also some inquisitive questions asked of the pumpers and CGM users.

I departed this event with a far greater insight from all of the different perspectives I had heard and observed in the room during the course of the evening, and all of the different motivations for attending.

During our committtee meetings, good ideas simply seem to pop among this very bright group of YADC members. I spend my spare time trawling social media, squealing with excitement over the latest device or venting my frustration over the latest coverage of diabetes in the media. I get to catch up with people in the industry and other diabetes bloggers when I’ve received opportunities to travel, who are people just like me.

This event, however, had finally brought me outside of the diabetes bubble that I so often find myself sitting in. I just need to figure out how I can spend some more time here.

People With Diabetes Panel Discussion at Roche Educators Day

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Last Tuesday, I was a part of the ‘People With Diabetes Panel Discussion’ at the Roche Educators Day. This is the first time that consumers have formed a part of the day’s proceedings, and I do thank Roche for having us there frantically tweeting away! It was also extremely humbling to see consumers being championed throughout the day by some of the presenters and attendees asking questions.

In a refreshing change of pace, West Australians on the panel outnumbered Eastern Australians. I was introduced to fellow type 1 Samantha, who is also Mum to two type 1 children, and Stephanie who lives with type 2 diabetes. The Eastern Australian contingent was represented by Ashley of Bittersweet Diagnosis and Renza of Diabetogenic.

Having two people on the panel who weren’t as immersed in the online world as myself, Ashley and Renza made the discussion richer. It was very insightful to hear Stephanie’s experience as a type 2, and not feeling very enlightened with her diabetes management until completing a DESMOND workshop. Samm’s perspective of “don’t wish for your problems to go away, wish for better skills to deal with them,” has also stuck with me for a number of days.

The highlight of my day was being able to tell a room full of healthcare professionals the importance of building a good support system. A short three years ago, I didn’t know a single person living with diabetes. I was feeling relatively isolated and alone with my condition before I began writing my blog and connecting to others through social media and eventually offline.

Our discussion shifted towards the illusive concept of ‘control,’ and this really challenged a belief that I had held for a long time. I was told I would live a normal life on my diagnosis, more so from my parents than from my healthcare professionals. I long imagined reaching a point where I would feel in control of my diabetes. As much as I wanted to believe that diabetes doesn’t make me any different, it does. Diabetes is not normal. We can only do our best to minimise the disruption of a very lousy condition.

I got the crowd laughing when I began talking about how my healthcare professionals continually bang on about not having more than two hypos a week. Despite their well meaning intentions, it’s simply not a realistic goal. I’ve certainly found that it’s an unfortunate trade off with spending more time in range. Then at the other end of the spectrum, I was ecstatic to see numbers in the single digits after my diagnosis while my diabetes educator told me that I needed to be correcting a blood sugar of 9 mmol. Ah, such a fine art…

So, what is the best thing that’s come from being diagnosed with diabetes?

Confidence.

Diabetes has made me a more confident person. I have learned to speak up for what I want from my diabetes healthcare professionals, and to make sure that they are working for me and meeting my needs. Three years ago I’d hardly have imagined myself being so open about my diabetes, let alone being an advocate for others. I really do think that this confidence has spread beyond my diabetes alone.

We weren’t supposed to talk about our peers as a positive of diabetes, because we talk about them all the time. However, I said it anyway. Diabetes has made the great big world around me a lot smaller through the people I’ve been lucky enough to meet, both online and off. 

When I think about how hard it was for me to say goodbye to each of these amazing individuals on Friday after four days together, I think that peers are definitely the best thing that have come from diabetes.

Disclosures: Roche Diabetes Care Australia covered my registration and travel costs to attend Roche Educator’s Day. I am also being paid an Honoraria for my giving up my time to speak in the People With Diabetes panel discussion. There was no expectation that my participation would bind me to a particular view of Roche, nor was there any expectation that I would blog or Tweet about the event.

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.

Is the DOC Inclusive?

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I’ve only been a part of the Diabetes Online Community for a little over a year.

When I nervously took part in an OzDOC chat for the first time, I felt very welcome. Strangely welcome, because the discussion was so friendly it looked like these guys all knew each other in real life. Somehow Renza stumbled upon my (very crappy at the time) blog, and offered me encouragement. Mike was one of the first people to leave me a comment, welcoming me into the Diabetes Online Community. I later learned he worked for a little site called Diabetes Mine and had included my post in their monthly blog round up. 

I found my place in this community quite easily, and I continue to participate quite actively. It stimulates me, it offers me support when I need it, and it inspires me to do better with my own diabetes.

Yet the other day, I felt compelled to agree that I sometimes I do feel hesitant to speak up because my opinion might differ from that of the majority.

To this day, one of the hardest things for me to accept is that not everyone is going to agree with me. I constantly try to remind myself that we are all different and naturally won’t agree on everything, but it’s still hard. I guess I find it hard to separate the difference of opinion with a dislike for my character. Silly, I know…

There have been some issues circulating around in the DOC that people have really strong opinions about. #DiabetesAccessMatters and Low Carb High Fat diets, are two examples that come to mind. Sometimes as a witness to these intense discussions and advocacy, I do feel hesitant to jump in with an alternate opinion for fear of being attacked or banished from a community I genuinely do love.

Social media only gives us a really small window into a person. When I first jumped in, I knew nobody with diabetes. I know for me, even just meeting a small group of peers at DX2Sydney this May has given me a lot of perspective in regards to the person with diabetes versus the Twitter window. It was a really valuable experience that carries me forward in my online activity to this day.

Some of my peers in the Australian community have set a great example for me in the use of diabetes social media. When I write here, I am increasingly conscious of trying not to “bash” the alternative opinion, or claim that my opinion is the right one, instead focussing on my own experience.

One thing I do admire is this community’s eagerness to comment and voice their thoughts. I often struggle to fit my ideas into 140 characters, and I’m terrible at keeping up in fast paced Twitter conversations. It often feels easier to lurk than to comment, and I feel I could be more inclusive by not being a stranger so often! 

I feel that Diabetes Daily and Diabetes Mine also do an outstanding job of being inclusive of the wider DOC. Diabetes Daily feature a wide variety of perspectives on diabetes management that I find myself reading more and more of. And you need look no further than the @diabetesmine Twitter feed to see how engaged the folks at Diabetes Mine are with the wider community.

Reading Renza’s post on the issue of inclusiveness yesterday really put my mind at ease. We don’t have to agree with one another, but we certainly need to be respectful so that others don’t feel afraid to voice their thoughts. 

I don’t really know how I come across online. But I hope that others would feel that I am respectful towards other opinions, even if I don’t agree all the time. 

Be kind to one another.

Fear as a Motivator For Health?

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During a diabetes themed episode of Sunday Night this week, I noticed several tweets from Diabetes NSW that had been carefully planted into the #SN7 feed on Twitter (the program’s hashtag). Including this one, which sought to tell us that 7,750 people die from diabetes and related complications each year.

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It’s not the first time I’ve seen these kind of Tweets from Diabetes NSW as of late. During the diabetes community’s I Wish People Knew That Diabetes day last month, Diabetes NSW once again hijacked the feed to fill us in on some of the scary facts.

On both occasions, the Tweets appeared automated and displayed little understanding around the respective hashtags they were hijacking.

After seeing this tactic employed once again on Sunday evening, I couldn’t help but call them out.

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As a member based organisation that supposedly represents and supports people with diabetes, messages like these really do members a disservice. Do messages promoting complications and instilling fear around poorly managed diabetes really motivate individuals to look after their health? I think not. And judging by the reaction I received on Twitter, I am not the only person who feels this way.

While stories like these may be effective on people without diabetes, I feel that they sorely overlook those of us who already live with it. In my opinion, health consequences such as obesity, sugar consumption, physical activity or kidney failure are separate issues that need to be dealt with exclusively from diabetes.

The sad reality is that the wider media eat up the sensationalised stories around the complications and fear surrounding life with diabetes. People without any connection to diabetes make assumptions based on what they see reported. Perhaps that a person with diabetes is not fit to work. That a person with diabetes lives an unhealthy lifestyle. Or in the case of the aforementioned Tweet, that a person with diabetes could drop dead at any given moment!

Yet the positive stories, the ones around people with diabetes being able to live healthy and full lives are often overlooked, or overshadowed by the sensationalised stories. Diabetes NSW were quick to point me to a page of positive “ambassador” stories on their website, including another “Frank” who I reminded them of. Yet I am reminded of this recent post from Melinda at Twice Diabetes. I can’t help but wonder whether they are ambassadors who are truly engaged with the organisation and the community, or just figureheads that are referenced when necessary.

To be fair, Diabetes NSW is not the first organisation to instill these messages. We had the dreadful 280 a Day campaign for Diabetes Week last year in Australia, and more recently we had the very confusing World Health Day.

Shaping the conversation around diabetes in public begins with the organisations who represent us. I only wish we weren’t so hard done by all the time.