Peer Support

#HealtheVoicesAU 2018

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Last weekend, I was lucky enough to get to Sydney to attend HealtheVoices (which I learned is actually spoken more like ‘healthy voices’ rather than ‘health-e-voices’).

After seeing the wild popularity of this conference among folks in the diabetes community who had attended US editions in recent years, I was curious to see what it was all about. This was the second edition that had been held in Australia, and my first time attending. Even if I didn’t get anything out of it, I figured it would still be worth attending just to catch up with some of the diabetes gang that would be there.

HealtheVoices is run by a company called Janssen (pronounced yaan-sen), which I believe is the pharmaceutical division of Johnson and Johnson. Their mission is to create a world without disease, and hence this program which is designed to support online health communities and advocates.

I guess this was a uniquely unique conference experience for me, because it put diabetes into a broader perspective of other health conditions. Just like diabetes, many of the other conditions represented there appeared largely invisible. I’d be lying if I said I didn’t find myself wondering where diabetes ‘sits’ in relation to all of the other conditions there.

Some of the other health conditions represented there included crohn’s, colitis, arthritis, various cancers and cystic fibrosis related diabetes. There were people living with the conditions, representatives from health organisations and carers. I was once again on the receiving end of stunned looks upon telling people I had travelled all the way from Perth.

SANE Australia, who appeared to be a major partner of the conference, supplied at least 20 or 30 mental health peer ambassadors, which speaks volumes about the prevalence and need to address mental health.

Throughout the weekend, I found myself explaining to others how the diabetes community operates, and how the diabetes ‘gang’ has become somewhat of a close knit group through social media, industry sponsored events, advocacy work and similar interests.

As I was listening to keynote speeches and personal experiences being shared on stage, I was left wondering what ‘community’ looked like for people living with health conditions other than diabetes.

Just last week, I wrote about how I have so many different ‘tribes’ that make up my diabetes support system. It couldn’t be more true. Because no matter where I am or who I am with, being part of the diabetes community always makes me feel that I am part of something bigger. I always, always, always feel like I am part of a community that has my back.

I really wondered about the dynamics of other health communities, what sort of a role consumers have in those communities, and whether they were as ‘closely knit’ as mine.

Something tells me that the diabetes community really is leading the way.

Disclosure: Janssen ANZ covered my flights, accommodation and shuttle to Sydney airport to attend HealtheVoices. Dad gave me a lift to and from Perth airport, and I happily paid for my train fare into Sydney CBD as I wished to arrive earlier in the day. I was fed and watered across the duration of the event, and also received a tote bag with some HealtheVoices stationery. 

The only condition of my attendance is that I would disclose the above if I chose to share my experience online. These thoughts are entirely my own. I happily gave up a day of annual leave from work to attend, as well as my Saturday.

My Diabetes Family

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Diabetes is an incredibly isolating condition to live with. Nobody around me can see the relentless decision making, thought processes and feelings that I am left to deal with on my own. To add to that, I do most of the housework including finger pricks, pump maintenance and eating glucose tabs in a quiet place.

When I was first diagnosed, I didn’t know a single other person like me. Over the weekend, I connected with three fellow type 1s, each of whom had developed strong peer support networks within a short timeframe after their diagnosis. I was in awe. I didn’t even think of searching for diabetes in my search bar or on Facebook. Mind you, I can’t say that I would have had an open mind to peer support at the time. Regardless, I kind of stumbled across it by accident.

Abbott’s first DX event in 2016 is a memory that will always hold a special place in my heart. It was the first real time I had spent in the company of a group of people with diabetes just like me. It was a place where I was finally able to put faces to many OzDOC folk who I had only ever chatted with online.

Today, I count myself lucky that I have so many more ‘tribes’ of people with diabetes that I can rely on for peer support. They truly have changed my outlook on life with diabetes for the better.

Some are near, while others are further away. Some are people with diabetes, while others are connected to diabetes. I chat with them online and see them in person at diabetes meetups. I’ve learned a lot from them, and they have definitely inspired me. They are the ones who truly ‘get’ it. They are a reminder that I am not alone in the highs, the lows, the unicorns, the emotions and everything inbetween.

I’m also super grateful for my own two parents, who have supported me unconditionally since the day I was diagnosed (or should I say, born!). Little things like offering to accompany me to appointments in the earlier days, listening to me talk about diabetes, helping me out financially and reminding me that they’ll always have my back.

On World Diabetes Day, Diabetes Australia are asking us to shine a light on ‘My Diabetes Family.’

Today I’d like to raise a coffee mug to mine.

You have all truly changed my life for the better.

I honestly don’t know what I would do without all of you.

Championing the Consumer Voice

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I walked away from the Australasian Diabetes Congress feeling that consumers had an even bigger impact than last year.

This was my second year attending the joint Annual Scientific Meeting of the Australian Diabetes Society (ADS) and the Australian Diabetes Educators Association (ADEA). Diabetes Australia pioneered a fantastic initiative called the ‘People’s Voice,’ which brought the voices of a few bloggers and consumer advocates to the Congress.

I don’t, for a minute, ever pretend to be representing anyone other than myself at events like these. I fully accept the privilege I have, knowing that I do not even come close to representing all people out there with diabetes. I’m super proud of all of the people with diabetes in attendance who drove this narrative home to the delegates, speakers and pharmaceuticals in attendance. In particular those with gestational diabetes, those with type 2 diabetes and those who are not as engaged as we are.

On Wednesday afternoon, I was lucky enough to contribute to a session which presented case studies on ‘co designing’ diabetes services with the involvement of people with diabetes. I spoke about my involvement with Perth Diabetes Care through the Young Adult Diabetes Committee. For more of a taste of what we do, you can find our Facebook page here. Melinda Seed at Twice Diabetes also spoke about her involvement with Reality Check and the resources that she helped to develop for people with diabetes.

As I said last year, I was so humbled to be in the presence of so many people that simply wanted to learn from us. The idea of this session was to plant ‘seeds’ in the minds of delegates, and we really did delve deep into some of the issues that were prohibiting the engagement of people with diabetes. I spoke about how big of a step it was for me to come along to a gathering of people with diabetes for the first time, and also sharing how much of a ‘slow burn’ some of our work in this space can truly be.

I have personally found the Diabetes Educators to be the most supportive, open minded and willing to learn from us. They are truly the people who approached me the most during the course of the week, and hopefully they will only bring more healthcare professionals and researchers along for the ride with us. I really do apologise for our narrative that, at times, can come across as assuming that all healthcare professionals are not person centred. We really are just passionate about person centred care!

The consumer voice was also championed on Friday morning during a technology symposium. As Professor Anthony Russell presented a narrative about the administration of insulin in a hospital setting, the dialogue that followed on Twitter was more interesting.

One of the biggest issues that I have heard from other people with diabetes is the forced relinquishment of self management in a hospital setting. People with diabetes are forced to relinquish their insulin. People have had to fight for the right to hold onto their insulin pumps or CGMs. Highly capable people with diabetes are often treated as incapable of self managing a condition that they spend relentless hours managing on their own.

I really hope to see a resource developed around the rights of people with diabetes to self manage in a hospital setting. If there are two organisations that I would like to see tackle this issue, it would have to be the Australian Centre for Behavioural Research in Diabetes (ACBRD) and Diabetes Australia.

People with diabetes also slayed the Twitter conversation. In a short two years, it really does make you wonder what they ever did without us? Ashley Ng ran a Twitter masterclass with the support of ADEA, encouraging healthcare professionals to get online. Just look at these amazing stats!

I am super proud of everything that the people with diabetes in attendance achieved throughout the week. I truly feel that the consumer voice was championed, and that we have proven our worth.

This is EXACTLY why we need to be at events like these.

Disclosure: Diabetes Australia covered my registration, travel and accommodation costs to attend the Australasian Diabetes Congress. My opinions and my time, including the annual leave I took from work to attend, are my own.

Day 3 at the Australasian Diabetes Congress

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Day 3 at the Australasian Diabetes Congress kicked off today with breakfast at the Adelaide Central Markets. I was absolutely flattered that Renza sacrificed participating in the 6.45am Novo Nordisk Fun Run to join myself, Ashley and Bionic Wookiee David for the best brekky in Adelaide! 

Class convened at 9am with a symposium on diabetes technology that, quite frankly, could have gone on for hours. Diabetes Australia CEO Greg Johnson was first up onto the stage to share an update on diabetes technology, much of which I had already heard at Abbott’s DX2Sydney event back in May. 

Diabetes Australia advocated for CGM funding for high risk and high need groups, with no age limits. Advocacy had also focussed on co-payments, as has been the case with insulin pump consumables and test strips. The federal government’s announcement of fully subsidised CGM was a complete surprise and will make advocacy more complicated going forward. 

Over 9,000 people have taken up CGM since the federal government’s full subsidy launched in April 2017. I also felt slightly patriotic as Professor Johnson highlighted that our NDSS should be the universal access pathway for diabetes technologies. 

There is also a product tender of syringes, test strips and urine ketone strips currently listed on the NDSS. It is expected that lower volume items will be removed to reduce costs, with an expected implementation date of December 1. 

We are also still waiting on an outcome on the subsidy (not reimbursement!) of Flash Glucose Monitoring. A public health consultation commenced in July 2017. Despite many healthcare professionals spreading Chinese whispers that the FreeStyle Libre will be subsidised soon, a final decision rests with the department of health. This really is anyone’s guess! 

Jane Speight of the Australian Centre for Behavioural Research in Diabetes took to the stage next to present some of the research into the psychosocial issues around Diabetes technology. My takeaways were that the tech is only as beneficial as the commitment from the person using it. The studies also prove that technology won’t be for everyone. It all comes down to individual choice.

Sue Wyatt rounded out our session, pursuing the topic of how well we have closed the loop. Although not made clear, the research presented referred to clinical trials in Medtronic’s 670G hybrid closed loop system only. 

Closed loop systems automatically adjust basal insulin based on CGM readings in order to regulate blood glucose levels. The system had a blood glucose target of 6.6mmol, with a target of 8.3mmol set during exercise. This is disappointing, and I know for a fact that these targets wouldn’t be suitable for many people with diabetes. 

However, I completely get that this blood glucose target may help to get a hybrid closed loop system as such approved for use sooner. I also expect there’s a commercial motivation for this as well, with the ability to sell an upgraded or enhanced hybrid system down the line. 

The major benefit of Medtronic’s 670G was seen in overnight blood glucose levels. Interestingly, we were told that this 6 month study was only in its infancy. It leaves a lot to be said about the timing of approval for Medtronic’s 670G system (the 670G pump has been approved, the 670G compatible CGM sensors are yet to receive approval).

Congratulations to Amy Rush of the Telethon Type 1 Diabetes Family Centre, who was awarded Credentialed Diabetes Educator of the year. Go, WA! 

I was also delighted to hear that SA based CDE Jayne Lehman was also awarded an honorary life membership to the Australian Diabetes Educators Association (ADEA). Well done, Jayne! 

The day rounded out with a debate on whether diabetes technology was helpful or harmful. This was a complete letdown, given that people with diabetes were on the affirmative side and people without diabetes were on the negative side. Without technology, we’d all be living in caves!

I would like to extend a massive thank you to Diabetes Australia for inviting me to be part of the ‘Peoples Voice’ team once again this year. While they covered my travel, accommodation and registration costs to attend the Congress, they did not pay for my opinions or my time. While I certainly don’t claim to represent anyone other than myself, I hope that I have been able to bring a consumer voice to the Congress. 

My gratitude also extends to joint Congress hosts – the Australian Diabetes Educators Association (ADEA) and the Australian Diabetes Society (ADS) – for their support of Diabetes Australia’s ‘People’s Voice’ initiative. 

Finally, a massive thank you to my amazing tribe of people with diabetes that made my week so special. I feel so privileged to spend time in your company call you all friends.

It’s been an insanely busy week with long days and late nights attending product launches, networking and blogging. I haven’t even began to scratch the surface of the exciting developments that have come out of this week.

I’m homeward bound as we speak and look forward to sleeping in my own bed tonight, having a coffee machine at my disposal tomorrow morning, and spending my weekend recouperating.

Stay tuned.

Remembering My ‘Why.’

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I often marvel at just how much I’ve gained from being a part of the diabetes community.

From talking to people connected to diabetes, to being my own advocate in my diabetes care, raising my voice, asking questions, attending local diabetes events and volunteering my own time toward causes that I am passionate about.

While it’s true that diabetes, and more specifically diabetes blogging, has given me a lot of amazing opportunities, it truly is the community around the diabetes that has given me the most.

Four years ago, I knew next to nothing about diabetes. I was injecting insulin and checking my blood sugar, feeling very conscious of the people around me. I had no confidence in what I was doing. I was riding the rollercoaster, ever so helplessly.

Unfortunately the public system here in Australia, while fantastic, is geared toward clearing those clinic corridors and pushing the person with diabetes toward self-management as soon as possible. More so when you’re someone who is coping relatively better than other patients, even if it doesn’t necessarily feel that way to you.

For me, the lightbulb switched on when I first joined Twitter in 2015.

I had no clue that there was such a valuable resource in other people with diabetes available at the touch of my fingertips. I had no clue that talking to other people with diabetes was a thing, whether that be on Twitter, closed Facebook groups, Instagram, blogs, forums or something else. Those online connections eventually led to in person ones.

The diabetes community would have to be the single biggest thing that has helped me to live well with diabetes, both physically and mentally.

A great deal of what I have learned about diabetes has come from hearing the experiences of others. It certainly goes a long way in complementing the 99.9% of time that I spend outside the company of a healthcare professional.

It makes such a huge difference to know that there are others going through what I’m going through. I daresay that it even inspires, and motivates me to keep going in the daily grind that doesn’t end at 4pm on a Friday or the week before Christmas.

At the same time, I’ve also been authoring this little blog that you’re reading. Here’s the thing. I’ve always admired blogs. Long before diabetes came into my life, and also long before they were somewhat replaced by social media.

I blog for one reason, and one reason alone.

Myself.

I can’t speak for, or represent anyone other than myself through my words here.

However I do hope that through this little corner of the internet, I’ve been able to get some of that information out that I so desperately needed to find four years ago.

As I round out blog post number 500 here at Type 1 Writes, I can confidently say that this is my ‘why.’

Marvelling at the beauty of this building in Leichhardt, NSW, in the same way I marvel at how much diabetes has given me.