“I personally wish that my diabetes healthcare professionals had asked me how are you going more often. Not how are your blood sugar levels going. Not how is your diet and exercise going. Not how are the number of hypos you are having every week going, either. A new diagnosis is a huge thing to deal with. A little empathy and understanding would have gone a long way in helping me to acknowledge that sometimes it might be okay not to be okay.”
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.
“A couple of weeks ago, I saw a photo posted into a closed diabetes Facebook group. This photo showed an individual’s pathology report, displaying their latest A1C result. It was an amazing, amazing result. I tip my hat. People were expressing their amazement in the comments. The moderator kindly congratulated the individual, before expressing that everyone is different and that onlookers shouldn’t compare.
I thought that the moderator’s response was impeccable. More so, because it reminded me of why I am reluctant to post my A1c result online.”
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?
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.
The Cellnovo Mobile Insulin Pump officially launched in Australia last week at the ADS-ADEA conference (ADS-ADEA disclosures are at the bottom of this post). The pump is being distributed by Medical Specialties Australia, and subsidised consumables will be available through the NDSS from October 1. MSA’s Diabetes Division Manager, Aaron Cook, was kind enough to come and meet with myself and a few other consumers last week outside of the trade hall to give us the scoop.
The Cellnovo system consists of a small insulin pump that sits on the skin via a Velcro patch, in close proximity to the infusion set. Tubing is virtually non-existent. The pump is rechargeable, rather than battery operated, with each charge typically lasting 3-5 days. There is a second identical pump included in the box, so that the user can charge one up while using the other.
If you know me in person, you’ll know that I’ve dreamt of a touch screen insulin pump that I could control from my Smartphone (yes, I’m well aware of Looping and We Are Not Waiting). Frankly, the interface on my Animas Vibe looks like something out of the 1990s.
So for me, the real selling point of the Cellnovo system is the touch screen mobile handset that connects to the pump via Bluetooth. The screen is bright and colourful. There are menus for insulin delivery settings, bolus calculations, activity tracking and food databases. The handset also has a built in blood glucose meter, which uses Accu Chek Performa strips.
Aaron was telling us something about wax and pistons inside the cartridge (or possibly the pump) that allows for more superior and precise delivery of insulin infusions. Insulin cartridges can only hold 150 units of insulin, which may be a consideration for those on larger doses. I would rarely fit the maximum amount of insulin into my cartridge once air bubbles have been primed out, so this may be closer to 100-120 units of insulin. Your Diabetes May Vary…
There were a few choices of infusion sets, with 5.5mm being the smallest. Aaron informed me that all infusion sets are 90 degrees, which is an issue for me personally as I prefer my 45 degree angled ones. However, I was encouraged to hear that there are options for manual insertion rather than insets.
Another consideration was the minimum basal profile being 0.05, rather than 0.025. To put this into perspective, my pump gives me the option of delivering 0.300, 0.325, 0.350 or 0.375 units of basal insulin per hour. The Cellnovo would reduce this to 0.300 or 0.350 units of insulin per hour. For some this might not be an issue, but during overnight fasting 0.025 does make a massive difference between a steady or a steadily dropping blood glucose level.
I’m also a little concerned about sleeping or lounging comfortably with the pump stuck to my stomach, so placement of the infusion site would be a big consideration. That being said, consumers overseas are happily wearing the Omnipod tubeless pump in similar fashion. Diabetes Educator Fiona was also questioning how well the pump would stick to the Velcro patch, however I thought that it indeed looked very tough.
Aaron describes Cellnovo as a medium sized startup company. They have been in the UK for around 2 years. Aaron is currently the only sales representative for Australia, and is basically travelling where the demand takes him. I am a little concerned around how well they will be able to handle customer service issues, although I am told this will soon change. Updated: I am told there will be a full customer service team in the office to deal with any issues. They are the same team who looked after the Cozmo pump.
It is really, really exciting that we have a new insulin pump option on the market. I can’t wait to hear from people who do decide to take up this pump, and whether it would be a worthy option for me to consider in two years time. While it won’t be for everyone, I believe that this might be just the thing that some have been waiting for.
Special thanks to Aaron for being so patient with a group of crazily excited people with diabetes and answering all of our questions. No, Aaron does not have diabetes himself…
From the left: Me, Aaron, my friend Tammy, fellow blogger Ashley and Victorian Diabetes Educator Fiona.
Excitement that only someone with diabetes would understand!