Diabetes Australia

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.

Day 2 at the Australasian Diabetes Congress

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Day 2 of the Australasian Diabetes Congress kicked off with a Plenary session covering communication in diabetes care. Even though she was only the understudy stepping in, I couldn’t think of a better person to cover this issue than Jane Speight of the Australian Centre for Behavioural Research in Diabetes (ACBRD). Much of the ACBRD’s research simply speaks to me, because they truly get how people with diabetes think and feel. Much of their awesome work is used to support policy and resource development over at Diabetes Australia.

Jane championed the ‘Language Matters’ movement, urging clinicians to enhance their communication skills when talking about and to people with diabetes to improve consultation outcomes. This video has been doing the rounds recently and it is absolutely amazing!

The theme of consumers carried onto the next speaker in this session, Elissa Renouf, wife and mother to four men with type 1 diabetes. It was so powerful hearing Elissa speak about doing everything she could to ensure that her three sons would grow up to live a healthy life. While she never deprived her boys of anything because of their diabetes, she did put a big focus on ensuring they performed the necessary diabetes management tasks before doing so.

After morning tea I attended the Australian Diabetes Research Foundation showcase, where I was able to hear about some of the outstanding research that had been funded. The awesome Kirstie Bell recounted her research into fat and protein bolusing, which you can read more about here.

Tammie Choi delivered an insightful presentation on her project ‘Not Scared of Sugar,’ a program which was designed to empower self care in a way that resonated with Chinese culture. We were told that Chinese culture preferred to hear from an authoritative figure when learning, and Tammie expressed that the Chinese did not respond well to an ambiguous answer!

Finally, Steve Trawley linked in by video to talk about his research into blood glucose testing prior to getting behind the wheel. The most interesting point highlighted was that Vic Roads does not endorse the use of blood glucose monitors or CGMs while a vehicle is in use. Bionic Wookiee David Burren and I both questioned the impact of not being able to know our blood glucose data while behind the wheel, and how the integration of smartphones with diabetes management might influence future regulations.

After lunch I had an extended wander through the exhibition hall, and I have been posting digests on both my Facebook and Instagram pages of what’s new in diabetes technology. Head on over for Cellnovo and Medtronic news!

The afternoon rounded out with a session on exercise and diabetes. While I proclaim to the world that Frank does not ‘do’ exercise, the reality is that physical activity is integral to my day job. The most valuable speaker in this session was Carmel Smart, providing some nutrition guidelines to minimise hypoglycaemia both during and after physical activity. It was interesting to hear how protein was recommended to replace glycogen stores following intense activity, and also as a way to prevent hypoglycaemia many hours after exercise.

I did wonder why the guidelines were so reliant on ingesting carbohydrate – and significantly large amounts – to avoid hypoglycemia. How would the person feel trying to exercise after ingesting all of those carbs? I know that many low carb people use ‘fat adaption’ to navigate physical activity, and I think this would be an interesting avenue for further research.

That’s day 2! I’m struggling to zip my suitcase shut for the journey home tomorrow evening, but not before another jam packed agenda for the final day of the Congress here in Adelaide!

Day 1 at the Australasian Diabetes Congress

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The Australasian Diabetes Congress kicked off today in Adelaide, and I count myself lucky that Diabetes Australia has once again asked me to join their ‘People’s Voice’ team of consumer reporters. Diabetes Australia have covered my travel and registration costs to be here, however I am here on my own annual leave from work delivering my own honest opinions.

It’s nearly bedtime, but in being true to my word and delivering the ‘people’s voice’ out of the Congress, here are a few highlights from the sessions I attended today.

The Congress kicked off with a rather dry opening Plenary session this morning. My highlight was hearing Stephanie Amiel discuss some of the attitudes to hypo unawareness from 600 adults living with diabetes in the US who were surveyed. I’m not too sure I agree that the notion of ‘soldiering on’ through a hypo is a thinking trap. I could definitely relate to not wanting to make a big deal out of my hypos, grabbing some glucose tabs and carrying on. I check my blood sugar often enough, I know how to sufficiently treat my hypos, end of story!

I attended a really fascinating session after morning tea about minimising the risk of type 2 diabetes among women in remote Australia who had gestational diabetes. Because if you’re unaware, gestational diabetes significantly increases your chance of developing type 2 diabetes down the track. 52 of 114 invited women participated in a survey with a primary goal of post partum glucose testing. The survey found major challenges in following up with these women. After up to seven follow up contact attempts were made, the final response rate among those 52 women was just 23%. It was suggested that some women were exercising their right not to engage in post partum screening, while others were possibly living in fear or denial of developing type 2 diabetes.

After lunch I headed over to a session where real life case studies were presented by diabetes educators. It was really eye opening to hear the case study of one gentleman who had been blindly dosing insulin and rarely checking his blood sugar. It’s not the first story of this nature that I have heard, and I think our system of care is really failing people in this regard. I also listened to Amy Rush of the Telethon Type 1 Family Centre in Perth talk about how she worked with a young girl and her parents to navigate a family holiday by the pool in Bali and carb heavy pancake breakfasts. This is definitely what person centred care looks like!

The day wrapped with our consumer symposium on Co-Designing diabetes services. I had the pleasure of sharing my motivations for being involved with the Young Adult Diabetes Committee and participating in a ‘co design’ with Perth Diabetes Care – a one stop shop for all allied healthcare professional services. I was a bundle of nerves in presenting, but it was really heartwarming to have so many positive vibes around me from my tribe of fellow people with diabetes.

Diabetes Australia have also launched two new position statements, neither of which I have read thoroughly. The first is about low carbohydrate eating, and I think it’s great that DA are acknowledging something that many people are already doing to manage their diabetes. Low carb is a very broad term, everyone will have varying definitions of what low carb means and this statement won’t please everyone. Diabetes management is not a one size fits all, and the underlying message is that everyone should be supported in their own diabetes decision making under the wing of a supportive healthcare professional.

The second is about DIY Closed Loop Systems that people are building at home. Two of this year’s DA People’s Voice team are using such systems. The statement basically says that these systems are not supported by Diabetes Australia, and that people who choose to engage in them are doing so at their own risk. Again, the underlying takeaway is that DA are acknowledging another big issue in diabetes, and that anyone who chooses to use these systems should be supported and continue to work with a healthcare professional.

It was a massive start to the Diabetes Congress, and I will try my best to blog again tomorrow. The People’s Voice team are live tweeting out of the sessions they attend, and we are doing our best to cover as much of the conference as we can. The best way to follow along from home is to head on over to Twitter. You don’t need to be signed up, you can simply search for the hashtags #DAPeoplesVoice and #18ADC in the search bar and follow along at home!

Overflowing.

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Being diagnosed with diabetes as a young adult came with its own, unique set of challenges. I had lived a ‘normal’ life for 17 years, and then all of a sudden I had this new condition that I had to find a place for in my life.

Nobody around me knew that I had diabetes, and it was difficult to explain such a complex condition to the people around me. In some ways, it was just easier to deal with my diabetes in private rather than having to try and explain what I was doing in the middle of another frustrating high blood sugar.

Today, I think my diabetes is pretty visible. Whether I’m talking with the pump in my hand, checking my blood sugar in the inventory office at work as someone comes to interrupt me, or walking back out again crunching down glucose tabs.

It’s fair to say that I have a pretty big interest in diabetes today. I spend a lot of my spare time writing here, freelancing over at Diabetes Daily, posting about diabetes on my social media, attending community events, as well as being part of a diabetes Committee here in Perth.

“Are you going with the diabetes group?” is now a fairly standard response from colleagues when they hear that I’m taking annual leave from work.

“What are you doing?”

“What’s that?”

I spent so long imagining people’s reactions to a finger prick or an insulin injection. Today, it often feels like they simply don’t take any notice. Those explanations of the condition that I live with don’t seem to have any effect when the same questions pop up again and again. Perhaps others are just sparing my feelings by not asking me what I am doing.

However after National Diabetes Week, it finally began to feel like those messages of awareness were getting through to the people who needed to hear them the most.

The response to my diagnosis story that was shared on Diabetes WA’s Facebook page last Sunday was phenomenal. The story that appeared in The West Australian on Thursday was absolutely huge.

Despite my repeated arguments of just how terrible that photo was, two colleagues at work pulled the newspaper out of my hands on Thursday morning, took it over to the photocopier and stuck it on the staff room wall at work. “It’s a really important issue that could affect the people you work with!”

Doing media is a really big thing, even for an over sharer like myself, but I couldn’t be prouder of the outcome.

After a big week spent raising awareness of diabetes, and hearing stories shared from fellow people with diabetes, my cup is well and truly overflowing.

This is what National Diabetes Week is all about.

itsabouttime.org.au.

Kicking off Diabetes Week with some of my tribe last weekend.