You are currently browsing the category archive for the ‘Peer support’ category.

On Tuesday night, I finished my World Diabetes Day at an event at the Western Hospital. It was an event for people with type 1 diabetes, and the topic was diabetes technology, including DIY systems.

There were probably about eighty people in the auditorium. I recognised some – a lot of – familiar faces as the usual suspects (or frequent flyers) who attended Type 1 in the City events from when the series was run up until a couple of years ago.

I’m not going to write too much about the actual content of the event, but I do want to commend the Western Hospital for providing a safe and friendly place to discuss new technologies. When there is a diabetes educator like Cheryl Steele involved in organising a diabetes information session – someone who has always been at the absolute forefront of diabetes technology, and is now a ‘Looper’ herself – you can bet that the program would absolutely include THE LATEST technology, not just approved technologies.

It makes sense for her to feel this way. As more and more people start to investigate Open APS and Loop, and decide to try it for themselves, healthcare professionals in all settings will come across people using it. Denying it exists is ridiculous – does anyone truly believe that if HCPs don’t talk about it to their patients, no one will know about it?

Instead of turning their backs on DIY technologies, the Western Hospital opened their doors to people talking about it, and having HCPs in the room to be part of the discussion. It’s important to remember, the Western Hospital and their staff are not endorsing it, (just as my employer is not endorsing it when I speak about my personal experiences, or the ‘DIY movement’). But they are acknowledging it’s there and that #WeAreNotWaiting for regulatory processes to bring commercial products onto the market.

One of the speakers at the event was Dr Barbora Paldus who is involved in the current Medtronic hybrid-closed loop studies in Australia. Her talk was terrific and she gave great clarity about not only the trial she is involved in, but also closed loop trials around the world. She was clearly interested to hear about DIY APS, expressing her nervousness, but still open to discussion.  She had a lot of questions, mostly about how to bring HCPs along in our decision to build our own loops. She wanted to know how we would encourage open dialogue with our HCPs so they better understood.

The discussion was lively. I felt that for most people in the room, they truly had just discovered a whole new part of diabetes treatments and technologies. Some people said that it wasn’t for them – and that’s fine. But they know something else open to them – something they may not have otherwise come to know about.

I got home at about 10pm and walked in the door. ‘How was it?’ asked Aaron. ‘It was brilliant.’ I said, realising that I was actually really quite emotional. ‘I miss these sorts of events. It was like the old days and the small community events at Royal Melbourne Hospital. We got kicked out of the auditorium so security could lock up!’

These days, I mostly attend events for HCPs, presenting at conferences and meetings. I enjoy this part of my work because it means I can provide a PWD perspective of what happens at those events. And I get to be the human face of the topics being discussed. I do love it.

But here I was amongst my people again – my tribe. And it was great to be there.

Looping, alive and deliberately non-compliant.

Click here for where to buy one of these David Burren designed t-shirts. 

Advertisements

I really tried to switch off from the external diabetes world during my recent holiday. (I would have liked to have switched off from my own diabetes too, but apparently this diabetes gig doesn’t work that way.)

But now, I’m back and playing catch up on all the things I book-marked and planned to read later. Join me!

PLAID

Do you read PLAID Journal? It’s a truly terrific open access peer-reviewed research journal full of interesting articles and research news.

The latest edition is out now, and it includes a little piece I wrote about day to day diabetes.

PROPORTIONAL

My friend Hope Warsaw alerted me to this graph which was tweeted during the recent MedX conference. I like-y very much!

WORDS AND MUSIC

Gee I have some talented friends! Melissa Lee, (there are truly not enough adjectives to describe her aweseomess), has been recording D-Parodies for a number of years now. In recent efforts to raise money for Bigfoot Biomedical’s recent JDRF walk team, she enticed people to donate with promises of new tunes. And boy did she deliver. You can see all of her parodies via her YouTube channel.

But start here for a gorgeous diabetes-themed rendition of Fleetwood Mac’s Landslide – obviously renamed ‘Lancet…’

COVERAGE ON ANIMAS

There has been A LOT written about the recent Animas announcement that they will be ceasing business in the USA and Canada.

If you’re looking to catch up, here are some things I’ve found to be particularly useful:

This comprehensive update from Diabetes Mine.

This great piece from Georgie Peters reminding us how personal these devices are to those of us wearing them.

This piece from Diabetes Wookiee, David Burren, urging Roche to step up with their pump which is still available in Australia despite no longer being in the US market.)

And just a reminder of the situation in Australia: Animas is not going anywhere yet, with disruptor AMSL’s update that it’s ‘business as usual’. Unlike our US and Canadian friends who need to make a decision quickly about changing pumps, there is no suggestions that we need to do the same. Animas is still in the Australian pump market – along with Medtronic’s offerings, the Roche Accucheck Spirit Combo pump and (from 1 November) Cellnovo.

HAVE ANOTHER COFFEE

Presented at EASD – the results of a ten-year study that showed people who drink coffee regularly are less likely to die of diabetes. Another latte, please.


DIABETES EMPOWERMENT SUMMIT

How’s this? A free 5-day diabetes summit that anyone can attend. The online Diabetes Empowerment Summit is the brainchild of Danielle Hargenrader.

Read all about it and get your ticket here. 

YOGA FOR DIABETES

More from talented friends! Rachel Zinman is currently on a book tour in the US promoting her new book – Yoga for Diabetes: How to manage your health with Yoga and Ayurveda.

You can buy a copy here.

THROW OUT THE FAX!

I was delighted when Scott Johnson included this slide in his presentation about MySugr at the recent Roche Blogger MeetUp at EASD:

Clearly I’m not alone in my frustration at the insistence of some HCPs to continue to champion (and only use) fax machines!

PEER SUPPORT SESSION WRAP UP

I wrote about the peer support session at ADS-ADEA, and my talk in the symposium. Here’s the wrap up from the ACBRD – the organisers of the symposium.

ALSO FROM THE ACBRD…

If you live in Australia or the UK, please take part in the yourSAY quality of life study. Have your say about the impact living with diabetes has on your life.

Click here to take the survey.

BINGO!

I couldn’t help but laugh when Melinda Seed developed this neat little bingo chart to be used at diabetes conferences. She tweeted it out at the beginning of EASD, just as I was lamenting that questionable language being used by presenters at the conference.

Unfortunately, I couldn’t play during talks. I would have spent far too much time shouting Bingo at inappropriate moments. Come on, people; do better!

I flew into Lisbon, arriving at my hotel just after midnight on Monday. I get that Australia is a long way from everywhere, but the 38 hours’ transit was a record for me and as I tumbled into bed, I dreaded the alarm that would sound a mere 6 hours away.

However, I’ve done this enough times now to know a sure-fire way to overcome jet lag is to organise a relatively early morning meeting that involves coffee and local pastries. (Hello, Pastelaria Versailles and thank you for your beautiful baked goods.)

The main reason for this trip was to attend the Roche #DiabetesMeetup. (Disclosures? Yep-all at the end of this post….) This is the third one of these meetings I’ve attended (read about the first one at EASD2016 here and the next at ATTD2017 here) and, as always, it was great to see the familiar faces of dynamic diabetes advocates doing dynamic diabetes advocacy.

This year, there were a whole lot of new faces, with over 60 diabetes bloggers from across Europe having been invited to become part of the conversation. As well as attended the dedicated satellite ‘consumer’ events, the bloggers are all given press passes to attend all of EASD.

This is astounding. It means that it is impossible to walk around the conference centre without seeing other people with diabetes. Arms adorned with CGM or Libre are not startling – they’re everywhere. The beeps and vibrations of pumps can be heard in sessions, causing heads to bob up, and knowing glances to be shared. Our presence here is undeniable.

On the first official day of the EASD meeting, the third annual #DOCDAY event was held. While Bastian Hauck (the event organiser) starts by inviting bloggers to the event, he warmly and enthusiastically extends the invitation to HCPs and industry too.

On Tuesday, the room was full of people, discussion and enthusiasm

#DOCDAY has become a platform for anyone who attends to take the stage, and five minutes, to share what they’ve been up to in the diabetes advocacy and support space. I stepped down from my usual language soap box, proving that this pony does indeed have more than one trick.

Instead, I spoke about the role of people with diabetes at diabetes conferences. I couldn’t think of a more appropriate time, or a more suitable room to plead my case, even though I knew that I was preaching to a very converted choir!

Two weeks ago, in Perth, there were a few of us wandering the #ADSADEA conference as part of the Diabetes Australia People’s Voice team. And at one point, on Twitter, where our presence is felt more than anywhere else, an interesting, frustrating and downright offensive (if I’m being honest) discussion started.

It was said that diabetes conferences are the safe place of diabetes healthcare professionals and that perhaps a day at the start of the conference could be dedicated to people with diabetes, but the delegate program (delegates being only HCPs) start the next day.

As you can imagine, that didn’t go down too well with some of the diabetes advocates in attendance.

I am actually unable to provide you with the arguments offered as to why people with diabetes should be excluded, but I think it included reasons such as HCPs need a space to be among peers, these are scientific conferences, HCPs need lectures without people with diabetes (not sure why – are we really that terrifying?).

I’m not into preventing people with diabetes attending diabetes conferences. Melinda Seed’s vision of 1000 people with diabetes at the conference is far more aligned with mine. We are not asking that the conference we ‘dumbed down’. I don’t want the sessions to be any different than they are now (with the exception of having PWD as part of the speaker list – but that is regardless of who is in the audience).

Here’s the thing. Organising a team of three consumers to attend (as happened in Australia) required someone to provide funding and coordination. That was Diabetes Australia and I’m really proud that the organisation I work for created this initiative.

To have over sixty advocates supported takes a commitment. I won’t for one moment suggest that I am naïve enough to believe that we are part of industry’s marketing strategy. But we absolutely should be part of that strategy. I am more than happy to give Roche the shout out and kudos they absolutely deserve for bringing us all together. I don’t use any of their products at the moment (although, in the past have used their meters), so I’m not in any way spruiking their devices or suggesting you go and update your meter with one of theirs.

But I am grateful that as part of their engagement with people with diabetes involves bringing us together at a diabetes conference.

What’s the role of people with diabetes at diabetes conferences? Our role is to share from inside with those not here. We’re here to remind attendees that using language that diminishes us and our experiences and efforts in living with diabetes is not okay. We’re here to tell industry they’ve messed up when they design is not spot on, or their marketing misses the mark. We’re here to challenge the idea that we should be quiet, ‘compliant’ and do what we are told.

As I said at #DOCDAY, we have a responsibility to share what we learn. I acknowledge – every single minute of every single conference day – that I am privileged to be here. And that comes with responsibility to share what I see, hear and learn.

DISCLOSURES

My flights and accommodation costs to attend EASD2017 have been covered by Roche Diabetes Care (Global). Yesterday I attended the Roche #DiabetesMeetup (more on that to come). Roche also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products.

Last week, I was invited to speak as the consumer in a peer support symposium at ADS ADEA. My talk was called ‘People like me’ because more and more, I’ve come to understand that the real value for me in peer support is the combination of the masses with diabetes – as accessed through the DOC – as well as those who form a part of my ‘inner circle’, or tribe.

So, obviously, my first slide was this one:

And then, I introduced the audience to my tribe from last week:

People like me! The #DAPeoplesVoice Team (L-R) Ashley, Melinda, Renza, Frank

The peer support symposium was coordinated by the ACBRD. Last year, they produced this report for the NDSS. They brought together four speakers, each speaking about different considerations of peer support.

After I gave my personal perspective on the peer support that works best for me, Professor David Simmons from Western Sydney University spoke about the evidence. The idea (as outlined in the symposium abstract) was to ‘…identify ways in which they are in synergy and/or tension with one another’.

David began by speaking about the Peers for Progress model, highlighting its four core functions of peer support:

  1. Assistance in daily management
  2. Social and emotional support
  3. Linkages to clinical care and community resources
  4. Ongoing support, extended over time.

I can only speak for myself and my own experiences, but the peer support I have carved out for myself meets all these points. While points 2 and 4 are probably the most relevant to me, I certainly have used my peers to assist with the day-to-day grind of living with diabetes and have also found connections with clinical support through my peers.

My experience is certainly not structured or formal in any way, however, for me, it works and it works superbly. Which was another point that I made – we need to find the right sort of peer support and that may be different for different people.

Some PWD may prefer to have something that is very organised. I prefer a more ad hoc, dip-in-and-out-as-I-need-it approach, and focus my energies on what I require at specific times. I also love the online community and the support it offers because it meets many of the things I’m looking for: flexibility (there’s not a meeting on the first Monday of each month to attend and if I can’t make that, I miss out); broad reach and a variety of people (which means that I will always find someone to provide support, no matter what the issue; diversity of experiences so my own understanding of what is going on with others is constantly growing, evolving and, often, challenged; all over the world allowing me to connect with people whatever the day of day – or wherever I happen to be (speaking of which…anyone in Lisbon next week?).

Another discussion point during the symposium was to do with the need for evidence to strengthen the case for peer support, which will ensure adequate funding to run programs. I find this a slightly double edged debate, really. I understand that with limited funding, those holding the purse need to know that money is going to go to programs that are known to work. But equally, I know peer support works. People with diabetes know peer support works. Melinda Seed, clearly frustrated (as am I) at the constant need to defend the value and importance of peer support, posed an interesting question, here:

Now, I don’t doubt for one moment that HCPs get a lot of benefit from attending diabetes conferences. Of course they do – they hear from leading experts, learn about the latest research finding, network with colleagues, speak with industry about new diabetes technologies and treatments. The leave feeling inspired, have improved knowledge, feel supported by others doing what they are doing, and have new tips and tricks up their sleeves top improve their practice. They know that. We all do. And yet where is the evidence to support it?

(For the record, someone did point out on Twitter to Melinda that the difference is that conferences are privately funded and therefore do not stand up to the same scrutiny that programs seeking public funding do. Melinda responded (quite correctly) that this argument doesn’t really hold water as many attendees there attend on the ‘government dime’. It is an interesting discussion….)

I think one of the problems we might have is that we narrow the definition of peer support sometimes, and perhaps some people think that it’s too fluffy and feel-good, and just about sitting around someone’s kitchen table and chatting. But as I said in my talk, there is much more than mere ‘tea and sympathy’, (although, I’m reticent to dismiss the power of such interactions because I know that sometimes those moments do produce a lot of support from people who are otherwise feeling very isolated and alone.)

I am speaking at the World Diabetes Congress at the end of this year and will be challenging the notion that peer support is all about group meetings. It is more than the traditional ‘support group’ model. One example I gave was the Pumpless in Vienna story (yeah – I’ll tell that whenever I can!). It was through peer connections that my friend Jo found a pump. It can also be seen and found in other ways – camps, information sessions, structured education programs. Peer support can be found in a lot of places, even if that’s not the term we give to it.

CEO of Diabetes Australia, Greg Johnson, and me talking peer support after last week’s symposium.

Disclosures

Roche Diabetes Australia has covered my travel and two night’s accommodation for my stay in Perth as I am a presenter at the Roche Educators Day (RED). There is no expectation from Roche that I will write anything about the RED, but I expect I will because it’s always such an interesting and enjoyable day!

The remainder of my time in Perth is part of my role at Diabetes Australia.

There’s lots happening, but I can’t look away from my Loop app at the moment because I’m so damn excited and obsessed! (I’ll be writing something about it sometime this week.)

But if I wasn’t doing that, I’d be (re)reading these things…

Why it costs so much to see a specialist
I’ve always paid to see my endos privately. In fact, I generally ‘go private’ for all my healthcare needs – I can’t remember the last time I was bulk-billed for a medical consultation.

It does cost a lot, and I am grateful I can afford it, but the excessive costs often discourage people from seeking the right care they need. Of course, we do have excellent public health in Australia. My choice for seeing HCPs privately include wanting continuity of care, and not being subject to frequently very long waiting periods.

This piece in The Conversation looks at why specialist care is so expensive. And what can be done to reduce costs.

Lookiee! A diabetes Wookiee!
For those who participate in OzDOC (and other DOC activities) you may have come across David Burren. I met David last week to talk all things tech (actually, I just fired questions at him about Loop and he patiently answered them without rolling his eyes even once). He’s started a diabetes blog all about diabetes and technology and, thankfully, it is in language that even I can understand.

Check out David’s Bionic Wookiee blog here.

Statues are like tumo(u)rs.
With all the nonsense going on in America at the moment, this piece from McSweeney’s most adequately explains why the ridiculous idea that statues commemorating less than favourable moments in history need to remain. Here’s my favourite part:

I view this tumor as an important symbol of your body’s history and heritage. Removing the tumor would be yet another example of misguided medical correctness in today’s liberal America. I protest this surgery and refuse to whitewash your rich medical history. The tumor must be kept prominently displayed inside your body.

Do better, America. We all know you can.

More on what’s on the inside
Mel Seed’s blog about normalising mental healthcare in diabetes follows on from DX2Melbourne and is well worth a read. Read it here. 

Diabetes is just…
This…

Faster insulin coming to Aus
A couple of weeks ago, I shared on my socials the exciting news that ultra-fast insulin, FIASP, had received TGA registration. No actual ‘launch’ date info as yet, although next week is the ADS ADEA Annual Scientific Meeting, so we may hear more then.

And in news that we already know…
Apparently, CGM is not just for abdomens anymore… File under ‘No Shit Sherlock’.

Swear-y
My blog emails keep getting blocked by the profanity filter at my husband’s work. Every now and then, he forwards me the message he’s received which states that the email was not delivered due to ‘offensive language’. #SwearyWife

This Twitter account definitely wouldn’t make it through, but it’s one of the best things I’ve seen on the interwebs for a while. I’d like to print THIS up poster size and put it on the wall of my office/wear it on a t-shirt, but perhaps that’s not appropriate.

D-parents and sharing the scary parts of their child’s diabetes online
I’ve linked to Moira McCarthy’s writing before because I think that she gets it right every single time she writes about the role of parents in their child’s diabetes.

This piece asks parents to consider if sharing their child’s scary and dramatic diabetes stories online is doing more harm than good. (I rather clumsily explored a similar issue last year in this post.)

Read her piece at ASweetLife here.

4Ts on Diabetes Mine…
Last month, during National Diabetes Week, in an endeavour to get our 4Ts message out as widely as possible, the good folks at Diabetes Mine allowed me to write a little about our campaign. You can read that here.

Living and loving someone with diabetes
As much as I think I am the most delightful and easy-to-live-with person in all the world, I have to admit that diabetes can and does impact on all relationships… and makes me perhaps not the most delightful and easy-to-live-with person. Aaron and I chalked up 23 years together yesterday. Diabetes has been part of the equation for over 19 of those years.

Diabetes advocates Nicole Johnson and Lorraine Stiehl have written a new book which has been called a practical guide to loving a person with diabetes. I’ve ordered a copy and will be leaving relevant pages open for my loved ones to read.

You can get a copy of What To Do When Your Partner Has Diabetes: A Survival Guide from Amazon. 

Meme-y and true
There are a lot of diabetes memes out there, but sometimes I see one that just hits the mark so perfectly. Such as this from a TuDiabetes community member:

On Monday and Tuesday of this week, I attended and facilitated Abbott Diabetes Care’s #Dx2Melbourne event which brought together eleven Australian diabetes bloggers. (All my disclosures can be found at the end of this post.)

(Just a recap – the DX (or Diabetes Exchange) series of events have now been run about half a dozen times. Other than #DX2Sydney and this year’s Melbourne events, the others have been held in hard-to-take cities including Stockholm, Berlin and Lisbon and have been attended by bloggers from the UK and Europe.)

#Dx2Melbourne reunited most of the bloggers who attended last year’s event, with some new faces thrown in for good measure. I was introduced to Alana Hearn for the first time, finally got to meet diabetes yoga guru Rachel Zinman, and caught up with Helen Edwards. (All the links to the blogs of the ‘repeat offenders’ who attended #D2Sydney can be found on this post.)

Some may believe that I am naïve in saying this, but the event is not about product. In fact, apart from a 45-minute presentation – the session that kicked off the two days – there was no other discussion about Libre or any other diabetes product unless it was specifically raised by one of the bloggers. Abbott did not have a new product to push; Libre has been out for over 12 months now in Australia.

(I am not, however, naïve enough to think that events like this are not part of the health industry’s 21st century marketing strategy. But, as I said last year when responding to a comment on my blog about this, this is the 21st century marketing. And I’m glad that consumers have a place in this strategy, because it would be far worse if industry was continuing with 20th century marketing strategies which completely excluded people with diabetes, and did not offer us any opportunity to directly engage and work with industry. Any device company NOT doing this is falling way behind and needs to catch up.)

As the Abbott team stated in their welcome, the idea of the DX events is to continue their commitment to bring together people living with diabetes to share ideas. And for Abbott to get an idea of what it is that is important to people with diabetes and what makes us tick – albeit a very select and privileged sample of advocates.

With this in mind, for me, the most valuable part of the event was the discussions that were completely driven by the bloggers. In an open session where we were exploring ‘why we blog’, I listened carefully as everyone articulated their reasons for going online and sharing their stories with strangers.

Reasons varied – some do it because they simply want to tell their story, some because they love to write, some have specific issues within diabetes they want to open up for discussion, some see it as an advocacy platform. What we don’t hear – ever – is anyone saying ‘Because I want to make money doing it’.  I can be all evangelical about it and say it’s because we’re a choir of angels, but mostly I think it’s because we’re smart enough to know the limitations of what it is that we do, as well as understanding the strength is in connecting, not money-making.

We also considered the shortfalls of having an online presence.

I’m an over-sharer and I know that there is a lot I write that many others wouldn’t feel comfortable sharing – and some people have told me that it is sometimes difficult to read. I also write about issues that are of no real concern to others, and they are more than happy to let me know that I’m wasting my time and energy on such irrelevant (language) matters. I also know that as soon as I put something out there, I am opening myself up for comment – both positive and not-so-positive. We had a discussion about how we manage unwanted attention and, in the most extreme cases, trolling.

I have never regretted anything I have written or shared, and have never taken anything down because I’ve felt it was too personal. But I have had some very unwelcome and sometimes nasty comments sent my way.

I found this a really useful, but somewhat challenging, discussion. I have written about some very personal experiences, probably most notably, pregnancy loss. I’ve also written a lot about how diabetes impacts my mental health. These are two topics that are frequently hidden away, surrounded by shame and secrecy – precisely the reason that I am committed to writing about them.

However, the times I’ve been trolled – and fortunately, that hasn’t been often – it has been when I’ve shared very personal stories. They’ve been the times where I have found myself at my most vulnerable, and being so exposed makes any sort of negativity harrowing.

It was reassuring to discuss – and remind each other – that even though we are voluntarily putting ourselves online, we are not inviting people to be nasty and disrespectful. Online is real life, despite what some people may think. This is the space where many of us convene to work together, support each other and share information; it’s not a place for personal attacks.

I left the event on Tuesday feeling utterly exhausted, but also filled to the brim – a feeling that only comes after spending a solid period of time with others treading the blogging and advocacy boards. I was reminded of the similarities as well as the differences we experience living with diabetes. I felt buoyed by the various issues that draw our attention. I felt desperate at the access issues I still hear about – both here in Australia and overseas. But most of all I felt part of something that is much bigger than me, much bigger than my blog and much more powerful that anything I can do on my own.


DISCLOSURES

Abbott Diabetes Care covered all my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if requested, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott – or anyone else, for that matter.

On Saturday, Medtronic Australia hosted their first Diabetes Advocates Day. Ten or so advocates from across Australia came together to hear about new technologies and talk about real-life application of technology in our diabetes lives.

There were some familiar faces and some newbies too which is always great to see. I, most opportunistically, used my role as facilitator for the day to get book recommendations from as part of the ice–breaker session. (Truthfully, this is always one of my favourite parts of these events, but it can also be a challenge when the people in the room are all over-sharing bloggers!)

There were a couple of standout moments throughout the day worth sharing.

Melbourne endocrinologist, Professor David O’Neal, gave a great talk on the future of diabetes technology.

David is one of those endos who after you meet and hear speak, you want to make him your endo for life. He is ridiculously tech savvy and his knowledge of diabetes technology is hard to beat. If you Google him, you’ll see that he is a regular contributor to diabetes journals and is involved in a lot of diabetes tech research.

Which is all good and well, but the real reason David is so wonderful is because he completely ‘gets’ diabetes and what technology can actually offer us. As a tech geek, it’s easy to be completely and utterly captivated by the technology, but David readily admits it has limitations.

This is really important to remember. Too often we forget that the tools we have today are not perfect, and cannot seamlessly mimic a fully functioning pancreas. Most importantly, this is not the fault of the person using the tech. David acknowledged both of these points in the opening to his talk.


I really love that David mentioned this because so often when technology doesn’t work the way it is meant to, there is an assumption that it is the fault of the user. We mustn’t have pressed the right button, at the right time, in the right order, with the right calculation.

But actually, the tools are just not smart enough to account for the daily changes and variabilities and inconsistencies that play a pivotal role in life and impact our diabetes. As David said, insulin requirements overnight can fluctuate by up to 200%. There is nothing available at the moment that is equipped to deal with that sort of variation.

Add to that, the effect of exercise, food, stress, hormones, illness or pretty much anything else, and there is no way the tech can keep up – or those of us using it can work out how to factor it all in.

This constant need to makes changes is what sets diabetes technology apart from other medical technologies which are often ‘set and forget’ for the wearer. With diabetes devices, there is no such luxury, which is why we need to remember that often, technology actually adds work to our already significant list of diabetes tasks.

Another absolute gem from the day came from blogger and advocate Melinda Seed. During a discussion about HCPs reticence to deal with PWD’s research online, was her comment (as tweeted by Georgie Peters):

This really is turning the whole ‘Dr Google’ thing on its head. Instead of fearing the internet – and PWD who use it to research and better understand our health condition, surely HCPs could engage to discuss safe ways to do that research. Being part of the solution rather than just fearing it makes a lot of sense.

And perhaps, look at it the way David O’Neal chooses to:

In a roomful of tech-heads, there was also a moment where we considered those who have no interest in using any sort of newer tech available. With the dawn of new hybrid closed-loop systems that take even more control away from the user, how do we make that leap to completely trusting the device? And is this particularly difficult for those of us who identify as control freaks when it comes to our diabetes management?

Affordability and access also came up, reminding me – and hopefully those from the company producing the devices – that this needs to be a consideration at all steps of the conversation. There is no point in developing and releasing onto market whiz-bang tech if people can’t afford to use it. (And we also must remember that as every new piece of tech is released, the divide between the haves and have-nots becomes more and more cavernous – especially when you remember ‘have-nots’ refers to not only the unaffordable tech, but also to basic needs such as insulin…)

DISCLOSURE

The Diabetes Advocates Day event was hosted by Medtronic Australia and was supported by Diabetes Australia. I am employed by Diabetes Australia as Manager of Type 1 Diabetes and Consumer Voice, and attending and facilitating the event was part of this role.

There was no expectation by Diabetes Australia or Medtronic Australia that I would write about the event, and my words here and in other online spaces are mine and mine alone. For more, check out the #DAdvocatesAU hashtag on Twitter and keep an eye out for blogs by other attendees.

Brutal. That’s the way I’ve been describing my week. It’s been super busy and there is no hint that will change any time soon.

But there is so much stuff out there to read. Here’s just some of it…

CGM

Oh, did you hear? CGM is now funded for children and young people under the age of 21 who meet eligibility criteria. It’s been ALL OVER the interwebs, but for the most up-to-date info, go here!

(And yes, I know, people 21 and over need CGM and need support. This isn’t over yet…!)

A psychologist who knows diabetes? Yep!

A good psychologist is worth their weight in gold. A good psychologist who understands the impact of living with diabetes on our overall wellbeing is like a unicorn – rare and magical.

So, I was delighted when someone from my office who has been a Research Fellow with the ACBRD for a number of years came to tell me that she is starting a private psychology practice. Dr Adriana Ventura’s research has focused on the psychological, social and behavioural aspects of living with type 1 and type 2 diabetes.

Adriana understands that living with diabetes (and other chronic health conditions) can be challenging. And she understands that these challenges can make it tough to take care of our health the way we would like.

Details about Adriana’s practice can be found here. (Adriana works with adults and older adolescents – 16 years and over)

Really? REALLY?

Seems that we’ve all been doing diabetes wrong. That lancet thing that we joke about never changing? This is how you use it according to the pic accompanying a BBC Radio 2 tweet.

Apparently it is really hard to do some decent research. (And if the image wasn’t enough of a deterrent, the article looks shit too, so didn’t bother reading it.)

My maths teacher was right

So, as it turns out, I do use maths every single day. Diabetes has certainly put my algebra skills to good use!

This article from The Conversation is all about how an applied mathematician developed an algortithm to help treat diabetes. As you do.

Words that over-promise

I can’t remember the number of times I’ve heard that a diabetes cure is ‘just around the corner’ or any other version of ‘five years away’.

But how do these promises affect people living with health confitions? This article from Medivisor asks just that.

March for Health

While we were celebrating the CGM announcement on Saturday, I was very mindful that my US friends were getting ready to continue their battle for fair healthcare. March for Health was held across the US on 1 April calling for affordable access to quality health care for all people. I don’t know about you, but that doesn’t sound unreasonable to me.

Check out more at the website here.  

And this, by the way, is possibly one of my favourite promotional posters from the March.

Women’s Health Survey … Quick!!!

And while we’re talking women’s health…There are still a few days left to do the annual Jean Hailes Women’s Health Survey, which identifies gaps in current knowledge when it comes to women’s health.

Click here to do the survey.

College Diabetes Network

There are some really wonderful groups out there supporting people with diabetes, and my friend from the US, Mindy Bartleson emailed me with some really useful information about the College Diabetes Network (CDN). The Network empowers and connects young people with diabetes and their are CDN Chapters on college campuses across the US.

The Network is certainly US based, but some of the information will be relevant to those in Australia (and elsewhere). Their resources provide information about how to prepare for the transition from high school to college or university. Do have a look!

Information for students can be found here.  And information for parents can be found here.

Peanut butter cookies

I made these cookies and jeez were they delicious!

They are gluten free, which I know is important for many people. For me, I need cookies that take no more than 10 mins to mix together and then taste perfect. Honestly, they are possibly the best tasting biscuit/cookie I have ever made… and I bake a lot.

The recipe can be found here. (I used smooth peanut butter as the recipe suggests, but I reckon they would taste awesome with crunchy. Also, do pop the mixture in the freezer before trying to shape the cookies. The dough is mighty-soft and sticky, and this step helps to get the dough from the bowl onto your cookie tray. AND DON’T SKIP THE SALT ON TOP!! This is what ties it all together and makes the magic happen!)

And finally……

… a little New Yorker Cartoons funny, which may not be directed at diabetes, but boy it certainly shows how I feel most days living as a diabetes tech cyborg!

Last Friday, I flew to Sydney to take part in the first Australia HealtheVoices Conference coordinated and run by Janssen (disclosure at the end of this post).

I’d followed along the US versions of this event, which have been running now for a couple of years, always with diabetes health advocates attending. So I was thrilled when I received an invitation to take part.

The event was run on Saturday with a dinner on Friday evening featuring Turia Pitt as the keynote speaker. I’m going to write something about that another time. Today I want to focus on some of the actual conference. This is just the first post – the rest will come over the next week or so.

I was extraordinarily excited about being in a room with advocates from outside the diabetes space. (But also pleased for the safety of the diabetes advocate bubble! We were well represented – four of us seated at the same table, occasionally nodding at each other as we recognised the stories others were sharing, even if their health condition was different to the one we navigate.)

Anytime I am surrounded by health advocates (diabetes and other) I have a weird contraction of feelings: surprise and absolute no surprise. Surprise that experiences are so similar and yet absolutely no surprise that our experiences are different! I read this article from the SMH (written as a follow up to the event) and so much resonated about Luke Escombe’s story, despite his peers not living with diabetes.

The speakers at the conference were diverse and covered a lot of different issues. And holding it all together was journalist and TV presenter Shelly Horton, whose fabulousness I cannot even start to describe! As well as making sure everything ran to time, Shelly shared stories of her own health experiences of living with PCOS.

HealtheVoices emcee, Shelly Horton, hamming it up with some diabetes advocates.

We started with Samantha Jockel from Aldi Mum. She was a terrific speaker, however I found that not everything she said sat easily with me, mostly because at times I struggled to see the parallels between what I do (write a rambling little blog about about my own experiences of my health condition) and what Sam is doing (building a community which generates income).

I also realised I’m a crap blogger! As Sam eschewed the benefits of knowing your analytics and stats – she is an analytics ninja! – I realised that I rarely if ever look at the stats on my blog or other social accounts. Facebook sends me a weekly roundup and I categorically ignore the email; Twitter wants me to check the activity of different tweets, but I don’t; Facebook also tells me when I a post is doing better than usual and I get annoyed at the alert thinking that it was someone posting a cute cat meme: LinkedIn tells me how many people are looking at my profile, urging me to go and see who they are, but I’m seldom interested.

I know these are tools that can help me grow my audience and build my following, but I still have this idea that the only people reading are my mum and the guy from Romania who used to message me every day. (Perhaps if I looked at my stats, I’d know that’s not the case…)

Sam also spoke about boosting posts and ‘throwing some money’ at them if they could do better. I’ve never spent a cent on promotion of my blog and can’t see that I ever will. Once I hit publish and share what I have written on my social feeds, I don’t do anything any further. Occasionally I repost the link on Twitter, but only when I remember that there are people living in different hemispheres and were probably asleep when I posted it the first time so may have not seen it.

I guess the difference for me personally is this: My blog is not my job. I make no money from it and I have no intention of it ever becoming a money maker for me. I have a job – this is not it, despite the significant time and energy I spend writing. I blog for very selfish reasons – to find my tribe!

But there was much that did resonate with Sam’s talk and the overarching message that I took away was this: be authentic. As she spoke about the importance of finding our own voice online, she kept coming back to the need to be relatable, honest and real.

That did make sense to me, because I know that the only reason that I write is to tell my story about living with diabetes – the good, the bad, the ugly, the real.  I know that when I read about people living with diabetes, I want to read the genuine experience. The blogs I read – and keep going back to – are the ones that are undoubtedly honest and authentic.  Real life. Real stories. Real people.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

Happy International Women’s Day!

This year, more than ever, it feels like we need this day. In fact, sometimes, it seems that the world is not a great place for women and that rather than advancing and continuing in our quest for equality, we are actually going backwards.

When we have governments – usually led by men – still thinking that they have a say with what women do to and with our bodies, making decisions about, and placing restrictions on our reproductive options and confusing health reform with the limiting of choices, we know that we’re not even close to things being fair for women.

My world is very shaped by women. Exhibit A: just a few of the women and girls who I’m lucky enough to call friends, family and colleagues, many of whom I’ve met through my diabetes life.

Exhibit A

But for me, International Women’s Day is about far more than my own world.

This year, the International Diabetes Federation has decided that the theme for November’s World Diabetes Day will be Women and Diabetes. In an effort to draw attention to the specific challenges faced by women with diabetes across the globe, the IDF will develop a range of materials to support women. There will be an entire stream at the IDF Congress in Abu Dhabi at the end of this year dedicated to women and children’s health.

Currently, there are almost 200 million women across the world living with diabetes and 40% of them are of reproductive age. That is a lot of pregnancies potentially impacted by diabetes. The need for safe, evidence-based, pre-pregnancy care for women with pre-existing diabetes is essential to improve outcomes for women and their babies.  And this needs to start early. With half of cases of hyperglycaemia in pregnancy occurring in women under 30 years, girls and young women with diabetes need to have access to education and information about the importance of pregnancy planning.

Women’s health and diabetes has always been a special interest area of mine. My first big project when I started working in diabetes organisations was to help develop a diabetes and pregnancy booklet.

But pregnancy is not the only health issue for women with diabetes. There are a lot of other concerns and issues that need to be addressed, and I am looking forward to what the IDF do later in the year.

So today I’m celebrating – and saluting – women around the world – especially my own daughter who sent me a clip of the women teachers from her school performing ‘I am Woman’. And checking out some really important women’s health-related sites (some links below). Go get your green, purple and white on and celebrate the day! 

Diabetes Sisters is a fabulous organisation based in the US and run by two of the women who appear in the collage above. It’s led by Anna Norton (CEO) and Sarah Mart (Director of Operations) who are exactly the kind of women you want on your team. I’m lucky to call them friends.

T1 International has this piece about the Sonia Nabeta Foundation.  

And, today is the perfect day to do the The Jean Hailes annual Women’s Health Survey and help shape women’s health in Australia.

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

%d bloggers like this: