Peer Support

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.

Yesterday’s Incident.

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Over the weekend, an uncomfortable incident caught my attention in a closed diabetes Facebook group. A new member to this group introduced himself as a health coach, sharing a before and after graphic depicting drastic weight loss and an image of a book he was publishing. Apart from the brief mention of the words ‘T1D for 20 years,’ there was no real substance to his post and I seriously doubted that he actually did have a connection to diabetes.

While the moderators of this group were likely out enjoying their Sunday, the community in this Facebook group impressively called this behaviour out for what it was. This man was clearly soliciting his products and services, and many in the group made it clear to him that this kind of a post did not belong in a peer support group.

While many healthcare professionals are still skeptical of online communities replacing their fundamental role, I felt that yesterday’s incident was an impressive example of how peer support is clearly not a place for medical advice.

The Diabetes Online Community typically does a stellar job at self moderation, with the community fostering a culture where participants feel welcomed, encouraged and able to seek support from those who truly ‘get’ it. 

Sure, a big part of our involvement in peer support is asking questions and sharing experiences, but the majority of the community embraces the philosophy that ‘one size does not fit all’ and that ‘your diabetes may vary.’ The DOC does not belong to any one person, and I believe that the majority of the community truly embraces this.

In my experience, keeping these philosophies in mind has made my experience an overwhelmingly positive one. Sure, I have witnessed uglier corners of online communities, and for the most part it’s where participants fail to acknowledge perspectives that might not be aligned with theirs.

One of the best things that has come from participating in the DOC is hearing these diverse perspectives, that have opened my eyes to the reality that not everyone is in as privileged a position as I am.

As for this individual, I expect that he is likely no longer a part of this online peer support group. I, for one, am glad that the DOC has the best interests of each other at heart.

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.

Diabetes and Mental Health at #DX2Melbourne

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On Monday evening, the attendees at #DX2Melbourne took part in a live webcast discussing the emotional, psychological and mental elements of living with diabetes. The panel was joined by psychologist Lisa Robins, who has experience in diabetes clinical psychology. I was actually thrilled for the opportunity to address this topic at an event of this scale.

Again, I am only relaying what I heard and talked about as honestly as I can recall…

It was quite interesting to hear one member of the panel comment that during earlier times he thought he was doing okay, but looking back on his journey today he has second thoughts. I actually feel the same way. I never thought that it was okay not to be okay, or to consider the impact that type 1 diabetes can have on my mental and emotional wellbeing. Today, I have no hesitation in saying that I felt isolated, emotional, not very well supported and in hiding from my condition.

Who was offered psychological support when they were diagnosed? A quick show of hands from the panel indicated two or three out of eleven. I shared with the panel that I was visited by a social worker in hospital. At the time, I felt relieved to feel normal and energetic once again. I felt that she was pressing for something that wasn’t there. However, how great would it have been if she had:

  1. Taken my word that I was fine.
  2. Highlighted some of the symptoms that I might expect further down the road.
  3. Pointed me to what other people with diabetes are doing to feel well with diabetes – weekly OzDOC chats, Twitter accounts, closed Facebook groups, forums, in person meet ups and peer support.
  4. Left me her card if I did feel that I needed that professional support.

17 year old me would likely have still ignored it, but I digress…

How do we best approach the issue of mental health? It’s something many of us prefer to stay silent about, and treated like its something to be ashamed of. A lot of us like to prove that we are stronger than diabetes, and in doing so we might ignore our vulnerabilities.

The consensus from the panel was that our healthcare professionals don’t take the time to simply ask “how are you going?” in reference to emotional health. The panel suggested that we need to normalise psychological support within diabetes, building it into our annual checklist with our eyes and bloodwork and feet. I’d also add changing the word ‘health’ in mental health to ‘wellbeing’ or ‘wellness.’

I was also thrilled to hear other panel members praising informal peer support. One panel member shared that in the absence of psychological support, it was peer support that had aided her mental wellbeing for so long.

Personally, online communities were the first form of connection I had to anyone else with diabetes. There is so much knowledge out there that helped me to become better engaged in my diabetes management. Those communities were my bridge to finding in person peer support, both of which help me to maintain relatively good emotional wellbeing today.

Touching on the stigma from healthcare professionals associated with online communities, panel members commented that it was more accessible, and no different from going to a coffee shop. One gem was that online communities complement, rather than replace psychological support.

Diabetes burnout was the next topic, and the panel pondered ways of how we identify those triggers that might suggest we need to take a step further.

I did ask Lisa how well she thought our healthcare professionals would be able to pick up those triggers and refer to adequate support. She was very confident, especially in reference to a GP. My personal view is that the right healthcare professional would be able to identify those triggers, so it’s definitely important to shop around and have healthcare professionals on your team that are meeting your needs.

Instead of trying to fix everything, one gem from a panel member was to instead focus on one element that you can fix. When I’m feeling burned out I might turn off my phone for 12 hours, go outside to ease my mind or go to bed early so that I feel more rested. Take small steps.

Another panel member talked about diabetes as extra years thanks to modern medicine, and all of the wonderful things she’s been around to experience.

Without a doubt, this was the highlight of my time at DX2Melbourne, and a topic that really did need to be discussed. The live webcast will be available on demand in a couple of days, once the camera crew (yes, there was a crew filming us) processes it all together. I will keep you posted.

If you’re in Perth and would like to connect with other type 1s and learn more about mental health in a supportive environment, then I highly recommend that you come along to this event on Thursday, August 24.

Disclosures: Abbott covered my travel expenses from Perth to attend #DX2Melbourne. I was put up at The Blackman Hotel on Monday evening, and was fed and watered across the duration of the event. There was a lovely goodie bag with a FreeStyle Libre reader, two sensors and some branded stationery. There was no expectation that I would participate in this webcast if I did not wish to, nor was there any expectation that I would blog about the event at all!