Peer Support

Farewell, #OzDOC.

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When I first dipped my toes into Twitter three years ago, the Oz Diabetes Online Community was one of the first places where I found peer support online.

I very much looked forward to Tuesday night Twitter chats, where participants would come together and answer structured questions about diabetes in a very supportive and engaging environment.

Inbetween chats, it was not uncommon to put a random diabetes question out there with the hashtag OzDOC and have it answered. OzDOC gave me the opportunity to network with other people with diabetes here in Australia, something I did not have in my own life at the time.

Over the past five and a half years, OzDOC has been largely led by co-founder and operator Kim. She has been the one responsible for making sure the moderator’s throne is occupied each week, and that there is a topic and questions ready to go.

Kim does a stellar job in welcoming participants to the chat, steering the conversation, and most importantly supporting and encouraging participants as they share candid insights about living with diabetes. To this day, chats just don’t feel the same when she is not in the moderator’s seat!

More recently, I stepped up and formed part of a moderator’s group of seven. Together we brainstormed topic ideas and took turns in moderating weekly chats. We’ve also seen healthcare professionals engage in our weekly chats, valuing the insights that I can only imagine would be difficult to gain in a clinic setting.

Another highlight from OzDOC would surely be having the opportunity to meet some of these amazing individuals at Abbott’s Diabetes Exchange in Sydney last year.

When Kim recently announced to the group her intention to step away from OzDOC co-ordination duties, it was a decision I totally understood. Running a support group like OzDOC in one’s own time is a big commitment each week. Even with a team of moderators, Kim still shoulders a great deal of responsibility in making sure chat slots are covered, questions are suitable, social media reminder posts are scheduled, and all of the other behind the scenes administration.

Members of the moderators group were offered the opportunity to take over Kim’s co-ordination duties, however nobody felt they were in a position or capacity to lead. I felt that realistically, this was not a commitment that I would be able to make next year and that the time was right for me to move on.

The final OzDOC chat will take place Tonight at 8.30pm AEDT. Be sure to also check out the Oz Diabetes Online Community Facebook page, where Kim has been sharing a bit of a retrospective over the past couple of days.

After tonight’s final chat, the @OzDiabetesOC Twitter account will cease. Does this mark the end for OzDOC? Who knows. If members of the community would really like for it to continue, then I’m sure that they’ll find a way.

To Kim and to everyone else involved in the OzDOC community in some way or another, I just wanted to say a massive thank you. You have all made my world just that little bit smaller.

Throwback Thursday: Thinking About An Insulin Pump

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Almost two years ago, I attended an insulin pump information evening. Today I’m looking back at that evening, and some of the reasons why I began thinking about pumping.

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Last night, I attended an information session on insulin pumping.

I’ve been on Multiple Daily Injections since I was diagnosed five years ago. I’ve never seriously considered an insulin pump, and I can’t say that I know too much about them. I’ve thought about going to one of these information sessions over the years, but it was just one of those things that I never got around to. Okay, truth be told I procratinated on RSVPing to those events until it was too late. Over and over.

I guess what motivated me this year was the fact that I am now a part of the Diabetes Online Community. I think, talk and write about diabetes every day. I feel more motivated towards my diabetes managment, just from interacting with you. I see so many of you blogging, tweeting, screenshotting and instagramming pump stuff each day. I want to understand it. And I want to seriously consider it as an option going forward.

Representatives from a few of the insulin pump companies were there to chat to before and after the session. I’ve never seen such eager salespeople out there in full force, desperately wanting our business. When our fantastic host asked for some sample tubing to show us, it literally seemed like a race to see which rep could get to her first. As I asked one of the reps if a meal bolus was as simple as inputting the number of carbs into the device, she began hurriedly cramming in as much information as she could before the talk resumed. I’ve never seen anything like it.

The topic of Continuous Glucose Monitors came up briefly. As I have written in recent days, Continuous Glucose Monitors aren’t subsidised by the government here in Australia. The cost of purchasing a CGM device and its operating consumables is excessive. While having a CGM may not matter to myself, I know that it could make a world of difference to young children and parents out there.

I thought it was rather interesting to hear the representatives in the room quickly removing themselves of any responsibility for those excessive costs. They urged us to write to our Members of Parliament. They urged us to lobby the government for subsidies towards CGMs and diabetes devices. As though it’s out of their hands.

These companies are responsible for the excessive costs of these devices. I hardly got the feeling that these people genuinely wanted to help me make my diabetes management easier. I so badly wanted to know if they even had diabetes themselves!

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Excuse ranty, 2015 Frank. In hindsight, that evening probably could have been designed a little bit better. The good news is that on Thursday October 12, Perth Diabetes Care will be hosting a tech evening, designed by people with diabetes. I’ll be speaking about my own journey with technology, all of the highs, lows and everything I wish I was told on that evening. If you’re in Perth I highly recommend you come along, have a play with the tech and meet other people with diabetes. Details below.

Technology Changing Diabetes Outcomes at #ADSADEA2017

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Another standout session from my time at the ADS-ADEA conference was a symposium on technologies changing digital health outcomes.

Professor Brian Oldenburg introduced us to the ‘new’ health communications landscape in a digital era, which was nothing new to many of the consumers in the room! The promise of technology is great, but how do we ensure that it has sufficient reach and sustainability? With technology ever evolving and enhancing, keeping up with it is a real issue.

The buzz word of the conference popped up once again, with talk of the need for ‘person centred’ design in these digital technologies. I felt that this would be a great opportunity to engage with digitally savvy consumers, such as the DA People’s Voice team who were all there frantically tweeting in the room! I would hope that the healthcare professionals in the room were reassured by the promise of digital technologies complementing, rather than replacing their fundamental role.

Digital health programs were challenged by their usability, engagement and outcomes. As we were introduced to a digital diabetes coach, I was really struggling to see how such a program would be engaging or motivating. While it’s true there is no judgement in a robot’s voice, there are also no expressions of empathy or other human elements that help us to foster trust. I was also skeptical that older people would have the computer literacy or appreciation for these programs. Many still prefer to be served by a teller at the bank, or by a person at the checkout. I’m a big advocate for providing options and not forcing technology on those who don’t want it. However, I was surprised to hear that these programs were being taken up by both older and younger people.

You can see the digital health coach for yourself and decide:

Bec Johnson of the Telethon Type 1 Diabetes Family Centre was next to take to the stage, talking to us about how digital technologies have played a fundamental role in helping the family centre to reach across the whole of WA. Can I just say how nice it was to sit there as a West Australian, having something that the East Coasters around me envied? You can check out my sneak peek inside the Family Centre right here.

Bec began talking about how isolating type 1 was for her, and her sentiments just echoed among many of the consumers in the room. She shared that it took 10 years until she first began connecting to other people with diabetes through the Reality Check forums here in Australia. Those forums were her saviour, and she knew that online communities would be a pivotal part of building a type 1 community here in WA.

The Family Centre’s closed community Facebook group is about connections, rather than information sharing. I was rather impressed as Bec told us that the group had ‘conditioned’ this culture among the group, with many participants quick to politely call out posts seeking clinical advice. New entrants to the group are screened with a series of questions, in order to maintain a safe space for parents to share some of their deepest darkest thoughts. The Facebook group also allows consultation with the community on events or programs, in order to deliver the needs of the community.

Bec highlighted the Diabetes Detective program, which would not be possible without shared CGM data and remote contact with Diabetes Educator Amy Rush to smooth out any blood sugar issues. Other examples of online education from the Family Centre include the ‘Cyber Carbs’ online carb counting course and Type 1 Babysitters training. Bec also touched on online crowdfunding, raising an impressive $10,000 for the Family Centre for her swim to Rottnest Island earlier this year.

I was only saying last night how it often feels that the contribution of an actual person with diabetes doesn’t feel valued by healthcare professionals, conference organisers, organisations and companies in the diabetes space.

What I loved most about Bec’s talk was how much it proved the value of having a person who has hands on experience in diabetes, working in diabetes.

Also, I’d really love to see the foundation of the Telethon Type 1 Community translate into something for young adults one day.

Disclosures: Diabetes Australia provided me with a media pass to attend the ADS-ADEA 2017 conference, with the view that I was interested in attending and delivering my own, honest insights to the wider diabetes community.

Championing Peer Support at #ADSADEA2017

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One of my favourite sessions at this year’s ADS-ADEA conference was the peer support symposium. Not only did it cover one of my favourite topics, but it also provided me with valuable insights into the work carried out by the Australian Centre for Behavioural Research in Diabetes (ACBRD) and Diabetes Victoria.

Renza took to the stage with her personal story, which I’m sure many consumers in the room could identify with. People with diabetes only receive a few hours of clinical support each year. They turn to peer support because it’s easily accessible, and in the case of the Diabetes Online Community, it’s available 24 hours a day.

The point that most resonated for me was the importance of timing. I know that I wouldn’t have been ready or willing to meet other people with diabetes at the age of 17, nor would I have seen any value in doing so. But today, having connection to people who simply ‘get’ it is so very valuable.

It brought me to this idea of the strong bond that diabetes creates among peers. As Renza touched on peers helping peers with diabetes, it really reminded me of how much more trusting we are of each other because of our condition. I’ve certainly gone out of my way to help other people with diabetes, some of whom I barely know. If only more of our healthcare professionals could foster this much trust, imagine how much better they would be able to support their patients?

Later in the session, Dr Jessica Browne of the ACBRD took to the stage to highlight some recommendations for peer support in Australia. Only 11% of survey respondents were taking part in peer support, suggesting that many programs did not have enough reach.

When I look at some of the communications from diabetes organisations, I would have to agree. I don’t often see weekly OzDOC chats promoted. People’s insightful blogs aren’t often shared. I don’t see cross promotion of events here in Perth from some of the leading diabetes centres. Technology companies are too focussed on marketing their products, and could definitely employ a bit more of a community focus. We are not enemies, nor should we be viewing each other as competition. We really should be supporting each other in order to better serve our communities and promote choice.

Unsurprisingly, 1 in 3 survey participants had not discussed their involvement in peer support with their healthcare professional, and 1 in 10 believed that it would not be endorsed. Dr Browne touched on the need for more heathcare professionals to link their patients up to peer support, which I wholeheartedly agreed with. It took me five years before I began to uncover some of the many forms of peer support out there. Online alone there are closed Facebook groups, Twitter chats, diabetes Instagrammers, people’s blogs and forums such as Reality Check and TuDiabetes. The possibilities are endless, and without peer support I would not be in such a good place today both physically and emotionally.

The elephant in the room was addressed, with Dr Browne and many consumers in the room expressing that peer support complements, rather than replaces the advice of a healthcare professional. Yet I felt that a conference targeted at diabetes healthcare professionals and promoting patient centred care really missed a golden opportunity to give them a taste of something that we were telling them was so valuable. There were no Tweet stands or promotional material in the conference bags to encourage healthcare professionals to get online. There was not one tweet throughout the whole conference from the @ADSADEA twitter account. The #ADSADEA2017 hashtag was largely flooded by the consumers in attendance.

Carolyn Jones was the final person to take to the stage, and she provided an impressive insight into how Diabetes Victoria engage with their peer support groups to more effectively deliver programs and events that consumers want. She touched on the need for choice so that the consumer could pick the option that suited them best, as well as the need for any peer support to empower the consumer. There are 80 peer support groups running across Victoria consisting of type 1, type 2, mixed groups and online groups. I feel that other states pale in comparison. There were more in rural than metro areas. More of the in person support groups were type 2 specific, which was reassuring to hear given that type 2s aren’t very active in online support.

A massive thank you to everyone involved in putting together such an insightful session. I felt that our consumer perspective on peer support was both championed, and nicely complemented with the research and evidence.

Disclosures: Diabetes Australia provided me with a media pass to attend the ADS-ADEA 2017 conference, with the view that I was interested in attending and delivering my own honest insights to the wider diabetes community. 

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.