Diabetogenic

Time in Rage

October 30, 2023 in Advocacy, Diabetes, Real life | 6 comments

My Time in Rage over the past few days has been high; very high. That’s not a typo, I mean Rage (with a capital R). Since I published a post about airport security screening, a dozen people have messaged me with their tales of systemic failures that have left them feeling pretty damn overwhelmed. This is in addition to the myriad conversations I’ve had over the last twelve months. The situations may differ, but the underlying theme is consistent – this is a system that is not working, and people with diabetes are left exposed.

As systems break down, PWD are forced to deal with confusion, uncertainty, and a glaring lack of support. This is not confined to one specific area. I may have written about airports on Friday, but it spans across various aspects of our diabetes lives. The consequence is PWD in the firing line.

I’m forever thinking about the labour borne by people living with diabetes and how systems increasingly shift care responsibilities. Not only are we burdened with intricate care coordination and management, but also, we’re left exposed when navigating through systemic failures. Diabetes necessitates that those of us who live with the condition shoulder most of the care, but that burden shouldn’t then be compounded by systems that fail us – whether it be airport security checkpoints, or in healthcare settings.

Even worse, we know decisions are made around us, or without our direct input and when we highlight how things are not working, we are met with defensiveness and excuses. Inconsistencies, confusion, and a lack of clear communication may all be the reasons that things don’t work, but they are problems that are not ours to solve. It is not our role to make sense of chaotic labyrinths. We should not be expected to decipher the complexities behind systemic failures. Our focus should be on managing our diabetes, living our lives, and not on mitigating the fallout from systems that are supposed to support us.

I know that it can be argued that there are better ways to deal with matters than getting all rage-y. I agree with that; it’s counterproductive and draining. High Time in Range is often accompanied by distress, and hampered efforts to do diabetes well. It’s counterproductive and it’s draining. But sometimes, it really is difficult to keep that rage in check, especially when I believe that people with diabetes are getting a rough deal.

Australian airport security and diabetes

October 27, 2023 in Advocacy, Awareness, Devices, Diabetes, Pumps, technology, Travel | 3 comments

Australian airports seem to have become a battleground recently for travellers with diabetes. My own experiences since Australia opened back up to travel have been appalling and each week there are reports in online diabetes pages about some pretty horrendous experiences. Specifically, the problems are to do with full body scanners which have been rolled out across international security checkpoints nationally, and some domestic checkpoints.

This year alone in half a dozen international flights out of Melbourne Airports and a dozen or so domestic flights, all been much more difficult than any travel experience pre-COVID. I documented one particularly brutal encounter at Brisbane Airport last year in this Twitter thread. Sadly, since then, other instances have been just as awful.

It seems that the training modules for security staff have incorrect information about which scanning devices are safe for diabetes devices. In my experience, the messaging is consistent: staff have been told that the metal detectors (the older walk-through screeners) are unsafe while the newer full body scanners (the stand still and be scanned) are safe. This is at odds with information from device companies and health professionals and has resulted in a number of people reporting clashes at security checkpoints.

There’s so much discussion about this, as well as lots of confusion and some pretty dire misinformation across OzDOC socials, some of it coming from diabetes groups. Let me try to break this down with information that is based on advice from device companies and the Department of Home Affairs. This is what I have used to try to help me streamline my own travel experiences – with varying levels of success.

Firstly, let’s start with the Department of Home Affairs. This page has the information you need, but specifically, under the section Travellers who have a mobility aid, prosthetic, medical device or medical equipment is this: ‘If you have a medical device or medical equipment, it may streamline the screening process if you have a letter or medical identification card from your doctor or healthcare professional that describes the device or equipment. It is also recommended that you talk with your doctor, healthcare professional or check the manufacturer instructions for guidance on whether the medical device or equipment is suitable for screening by body scanner technology or X-ray technology, and if not, make the screening officer aware of any restrictions before beginning the screening process.’

Device companies all have their own advice, so familiarise yourself with what their recommendations. I wear a Dexcom, and carry a printed copy of security screening advice. At the end of this post you’ll find links and relevant information about the different devices available in Australia.

Knowing how tricky things are likely to be, I am super prepared for security checks now. I carry a letter from my endocrinologist that states I’m wearing diabetes devices that must not go through the full body scanner, and that my pump cannot be removed (not so relevant these days as I wear Omnipod). In a sign of just how much the times have changed, I now need to show that letter about 80% of the time at Australian airports. Pre-COVID I maybe needed to produce it twice in hundreds of journeys.

I always remain calm and clear about what I need: ‘I am wearing medical devices and cannot go through the fully body scanner. I can go through the metal detector, or I need a pat down. I’m happy to wait out of your way.’ I stand firm with this request, remaining polite and calm even when there is increasingly aggressive pushback. In most cases, security staff will tell me that the training says body scanners are safe and metal detectors are not. At this point, I offer the letter from my doctor and the printed out advice from Dexcom and mention the relevant information from the Department of Home Affairs. If there continues to be pushback, I’ll ask to speak with a supervisor. I truly hate doing this.

While this isn’t applicable to me now, at no point ever would I remove my insulin pump and hand it to security staff for inspection. Disappointingly, some of the device companies’ travel advice (and today I saw advice from a diabetes centre) suggests this. Don’t do it. I am happy for them to swab it while I hold it, but I won’t disconnect and hand it over. Items go missing and handed to the wrong person or could be damaged at busy security checkpoints.

I know others with diabetes are happy to go through whatever scanner they are directed to and have had no adverse issues and that’s great. But this isn’t about individual experiences so much as about how to manage situations according to manufacturers’ advice and knowing what official information from the relevant Government department is. It’s also about being treated respectfully and having our own lived experience and knowledge respected by security staff; something that sadly seems to be repeatedly forgotten.

If you’ve had a lousy experience and have the emotional labour to write a complaint to the airport, please do so. There are online forms you can use.

It would be really great if this additional work didn’t fall to people with diabetes. Device companies could step up here and provide cards to use at security checkpoints, similar to those that have been developed for people with pacemakers and knee and hip replacements. Simultaneously it would be great if there was a form that could be personalised and printed out or a card issued via the NDSS when people register for pump and/or CGM access (this wouldn’t serve people who are self-funding, but it would reach the majority of Australians affected). While I am sure that there are efforts underway to address it, there’s no time to wait and a temporary fix is needed immediately. And any other advocacy groups who are addressing this issue can make sure that the advice they are providing on behalf of their diabetes community is accurate and best serves the needs of people with diabetes.

A photo of the Melbourne sign in the departures hall of Melbourne Airport. — _{The departures hall at Melbourne Airport (before heading to the nightmare that is security screening)}

Advice from device companies in Australia

AMSL has this advice for Dexcom users: ‘Use of AIT body scanners has not been studied and therefore Dexcom recommend hand-wanding or full- body pat down and visual inspection in those situations.’

Insulet Australia has this advice for Omnipod users: ‘The Omnipod DASH®PDM and Pods are safe to go through the x-ray machine and the Pods are safe to be worn through airport scanners.’

AMSL has this advice for Tandem T:Slim users: ‘your Tandem Diabetes Care insulin pump should NOT be put through machines that use X-rays, including airline luggage X-ray machines and full-body scanners.

Medtronic has this advice: ‘Your pump should not go through the x-ray machine that is used for carry on or checked luggage or the full body scanner.’

Abbott has this information for FreeStyle Libre wearers: ‘The FreeStyle Libre reader and the FreeStyle Libre sensor can be exposed to common electrostatic (ESD) and electromagnetic interference (EMI), including airport metal detectors. You can keep your FreeStyle Libre sensor on while going through these. However, the FreeStyle Libre reader and the FreeStyle Libre sensor should not be exposed to some airport full body scanners.’

Fiasp still on the PBS (in new packaging)

September 19, 2023 in Diabetes, Real life | Leave a comment

What great news for Aussies with diabetes yesterday with the announcement that Fiasp will remain on the PBS! Such an excellent way to start the week. The media release from the Department yesterday referred to a ‘new form of fast acting insulin’, but that’s really not correct. It’s still Fiasp!

The bottom line: if you’ve been using Fiasp, you can continue to do so after 1 October via the PBS. The difference is how it is being packaged up. (Think of it like when you go to your local Woolies where you can buy the same brand of juice in small and large bottles, glass, and plastic bottles etc. Different vessel; same product inside.) It’s exactly the same drug, but now, it will be available only in Penfills. Up until now we have been able to purchase Fiasp in vials or FlexTouch disposable pens. Those options will not be available any longer.

This is not new. Twenty-five years ago when I as diagnosed with diabetes, this was the only option I knew! I was given two rather swish looking matt silver pens in grey boxes that housed the pen and three pen tips. I then picked up 5 boxes of insulin and inside each box there were 5 cartridges and those cartridges popped directly into the silver pen.

That’s how Fiasp will be available from the pharmacy now. If you use injections, the Penfills fit directly into a reusable NovoPens (for those using injections); if you’ve been using vials to fill pump cartridges, it’s still possible (and easy enough) to do so from Penfills.

It’s annoying when the language and words used to describe different diabetes products gets messed up, because it causes unnecessary confusion. And there was some confusion yesterday about what this ‘new form’ of insulin meant. This is why having people with diabetes involved in messaging is so important – we get the language, the jargon and the words right!

In case you missed it, here’s the JDRF Australia announcement which very clearly outlines exactly what this is about, using accurate language. (Disclosure: I work for JDRF International, not the Australian affiliate. Sharing this from yesterday because the comms from the organisation across all socials were super informative and used all the right language.)

And of course, the Bionic Wookiee was on top of it with this great blog post which outlines what it all means – also super clearly.

So, it’s good news really for the community, really. And an example of a united community response I’ll be pointing to for some time! Great work, OzDOC!

Photo of my hand holding a vial of Fiasp insulin. — The first time I used Fiasp (2018). I’ll be moving from vials to Penfills now.

New tricks

September 18, 2023 in Devices, Diabetes, Pumps, technology | 1 comment

Because our little diabetes community is about sharing and caring, a sharing and caring friend of mine gave me a few Omnipod Dash pods to try. I’ve been Open-Source looping with an old (small size) Medtronic for the last 6 years, and the recent news that the 1.8ml cartridges were coming off the market sent me into a spin of despair. I probably wailed ‘Why do things keep changing?’ at some point.

I am firmly of the ‘If it ain’t broke, don’t fix it’ school of thought, and needing to re-evaluate my current, very-not-broke Medtronic Loop set up was not something I was particularly keen to do. But it seemed that the decision was being made for me, and switching to Omnipod seemed to be a not-too-stressful way to keep using Loop.

Of course, between my panic, wailing and fury (alongside talking myself off the ledge of stockpiling every box of 1.8ml Medtronic cartridges available in Australia), a DIY fix was already being created that involved cutting down the larger 3.0ml cartridges to safely fit the smaller pump.

But the seed had been planted. Maybe Omnipod could be the easy solution. Pods are easily available. I have private health insurance that hasn’t been used to get a pump since 2013. And, most importantly, I won’t need to stop using Loop, or lose any of the beautiful ease it has brought into my life. This has been the reason I’ve not switched to a commercial system. I’m not willing to consider anything that requires what I consider to be a step back. Not being able to bolus from my phone or smart watch, needing to carry another device to drive whatever I’m using, and less customisation are all a step back in my mind.

So, I bribed my sharing and caring friend with lunch, and he came over my way to deliver some pods for me to try and since then I’ve been on and off Omnipod since the beginning of August, including for ten days travelling in India for work.

I’ve been pumping for over twenty-two and a half years. I’ve never taken a pump break. When I say having an insulin pump hanging from my body is my normal, I mean it. It was with me in the delivery room when my kid was born and has travelled the world with me. I have worked out how to tuck a tubed pump away in my clothes so that it doesn’t cause any sort of unsightly bump and other than my constant (sadly losing) battle with door handles, the tubing really hasn’t bothered me.

For these reasons, I’d never understood the deep-seated position some people hold at not wanting to use a tethered pump, or the overall appeal of a patch pump. That’s not to say that I don’t think they’re a good option. I just wasn’t drawn to one the way that I know others have been. To be honest, I’ve been kind of ambivalent about the benefits of no-tubing. That was all 15 pods ago ago, and now I get it.

Here are some of the thoughts I’ve had since using Omnipod:

⊙ Oh my Lordy! Phantom-pump is a real thing. I spent the first week of wearing a pod groping around for my old Medtronic pump. I’d go to grab my pump if I got up out of bed overnight, or first thing in the morning. One night, I thought I’d ripped out my pump and after groping around for a few minutes, woke Aaron, thinking it was under him. Half asleep, he said ‘It’s on your arm.’ I still do ‘the pat down’ before walking out of the house each day, gently tapping the middle of my chest to reassure myself that my pump is there. It’s redundant these days!

⊙ I don’t know why I thought it might be more complicated to use than it is, but I was really pleasantly surprised by ease of it all. The clunk of the cannula going in is slightly startling the first time, (but no more so than putting in a sensor). I’ve not found it painful at all.

⊙ That tape sticks! After three days, the tape has still been firmly adhered to my skin and looking pretty pristine. This was even in India where it was hot and humid. This bodes very well for the warm Aussie summer we’re being promised!

⊙ I thought that the Pod would feel more obtrusive on my body, but I have absolutely not once had a moment of ‘Ooh – that’s uncomfortable’ when I’ve rolled over in bed.

⊙ I’ve worn the pod on my right arm (Dex is always on my left), sides of my stomach (low and high), thighs (and didn’t rip it off when pulling down my jeans to race to the loo!), hips, lower back and all have been fine. No pain or discomfort at all.

⊙ Not needing to wear a bra if I don’t want to is liberating! Not needing to consider housing my pump and Orange Link is one fewer thing to think about!

⊙ I feel lighter because there is one fewer pieces of diabetes kit I need to worry about now that my Orange Link is redundant. This is a big win!

⊙ I’ve had two faulty pods which isn’t great really and the ‘replace pod’ alert came after three hours of inexplicable high glucose levels that were not responding to adjustment boluses. I’d really like to know if a problem is detected with the device before three hours of low teens numbers. The two faulty pods have happened in the last four days and I’m actually back on my Medtronic right now because I am a little thrown right now, but I’ll go back onto a pod later in the week when I head to Sydney for work.

⊙ Sorting our replacements with customer service has been a slight rigamarole, requiring far more calls and questions than seem necessary, and requiring a lot more emotional labour that, quite frankly, I don’t have to give.

⊙ Door handles are friends again. (Door jambs on the other hand, are now potentially double trouble if wearing a Pod on one arm and Dex on the other!)

⊙ I don’t love the waste and the thought that I am effectively using a pump every three days. Insulet offers a super neat recycling program which goes someway to alleviating my concerns about this. I love that my delivery came with a labelled box, zip log bag and clear instructions for the recycling program. This is outstanding and I wish other device companies could be this forward thinking.

⊙ The three-day hard cut off annoys the crap out of me. And yes, I’ve been using the 8-hour grace period every single time. I know that we are meant to change cannulas (tubed or otherwise) every three days, but many of us extend by a day or two when we know it’s safe to do so. And twenty-two years of pumping, not a single site infection, and knowing when I’ve extended to my limit would suggest that I am able to safely decide to keep a pump running for a few more hours without having it screaming incessantly at me. Alas, that’s not possible here. (And how has the DIY community not figured a work around this yet??)

⊙ Cost is, of course a consideration. I’ve not used my health insurance yet, so I have paid the NDSS + Insulet cost which is $29.30 (NDSS cost) + $168.27 (Insulet cost) per box. It works out to just under $20 per pod which is not cheap. If I make the decision to use my private health insurance and start using Omnipod on an ongoing basis, I will only have the NDSS contribution, bringing the cost down to $2.93 per pod – way nicer!

⊙ Omnipod currently has a new user deal on. You get 90 days of Omnipod for $149.40. Really annoyingly this is only available to new customers. I tried to see if I was eligible for this (after all, I’d consider having bought only one box would classify me as ‘new’ to Omnipod, but alas, I was not eligible). This is actually very disappointing. I’ll never understand why companies ‘punish’ their existing customers. But, if you’re brand new to Omnipod, this is a great deal and I’d encourage you to get onto it now! It’s a great way to try before you commit to using your PHI.

⊙ The best thing? Choice! Having a tubeless pump available here in Australia means Aussies with type 1 diabetes have another pump choice and that is only ever a good thing and should be celebrated. I now get why people are determined to only use a tubeless pump and if that is their choice, it should be available to them, and they should be supported to make that choice. I’m hearing that there are some centres that won’t use Omnipod and that’s absolutely not okay. If anyone is in that situation right now, reach out if you’d like some suggestions about advocacy to change the situation.

It’s exciting to try new things and this really is the first significant diabetes device change for me in some time. It is energising to have something different to play with. If you’ve been thinking of trying something new, this is a good thing to try!

Photo of me standing in my kitchen with an Omnipod insulin pump on my upper arm. I'm wearing blue jeans and a striped top and holding a yellow mug. A little black dog in a striped jumper is jumping up towards me.

DISCLOSURE

None! I was given a few pods to try from a community member (who has no affiliation with Insulet or Omnipod) and bought a box myself. I have done some consulting work with Insulet before, but not in the last two years.

Reaching out

September 14, 2023 in Community, Diabetes, Mental health, Real life, Wellbeing | 2 comments

It’s RUOK? day and while I am ready to jump on any worthwhile bandwagon, this one, today, seems especially important. A (non-diabetes) community of which I am on the periphery is grieving today after the death of a much-loved friend and colleague. I’ve been reading beautiful tributes to this person and messages of love and support to their family. I can’t begin to grasp what their loved ones are going through today.

RUOK? is more than a single day. It’s a movement that emphasises the power of human and social connection and having conversations about difficult things. If you’ve not looked at the website, there is advice about building the capacity of support networks (the very foundations of diabetes peer support groups for decades now) and developing skills to have meaningful discussions with someone who might be struggling.

It’s applicable to everyone, including those who may appear to not necessarily need it. Undeniably, it’s very relevant to diabetes. (This article outlines the increased risk of suicide in people with diabetes.)

Diabetes and mental health may be a topic on the agenda at most conferences and we’ve certainly seen an uptick in mental health and diabetes research over the last decade. But the strides that have been made are not enough. The pathway to genuine support and treatment for people with diabetes remains elusive. Simply telling people to seek help falls short when the help they need is not available.

Our peer networks go a long way to offering support, empathy, and love, but we’re not equipped to handle complex mental health issues. While we can assure people that they are not alone and perhaps offer suggestions for where they may find help, this does not go far enough in addressing mental health care, especially in critical situations. Accessing mental health professionals that have knowledge and training to support people with diabetes is what is needed. And it needs to be easily accessible. Easily affordable. Easily available. Right now, that’s not the case.

On RUOK? Day implores us to tap into our social circles and genuinely check in. (Do it, please; just do it). But there is a braider landscape of mental health in the diabetes landscape that needs real transformation. And while it seems unreasonable to add extra burden to those of us living with diabetes – after all, we are already expected to do so much of the physical, emotional, social, and political labour just to get by – community action drives change so often. We have had successful and coordinated community efforts to increase technology funding and access. Is our next frontier turning our attention to increasing funding and access to mental health care for people with diabetes? I know that some diabetes organisations have this in their sights, but without people with diabetes making noise, the campaign is only half-baked. Our voices amplify the urgency of the issue.

Today is just one day, but if RUOK? Day is what provides the gentle nudge to initiate these conversations, it’s a step forward. The tapestry of personal narratives, community connections and shared experiences form the basis of peer support. But not everyone has a safe space where they can share or the people to share with. Sometimes we need to reach out, extend a hand and signal we’re ready to listen. Keep reaching out. Today. And tomorrow. Every time you can.

Click on image for community resources on the RUOK? website

Invisible squared

August 10, 2023 in Diabetes, Real life | 2 comments

There are moments when someone says something so illuminating that it sticks with me and I turn their words over and over and each time, those words hit home deeper and deeper.

That’s how I’ve been since last week, when Victor Montori, during his talk at the Nossal Institute for Global Health’s Compassion, Care, Complexity & Culture webinar said: ‘The work of being a patient is invisible‘. He went on to talk about just some of what is required of people living with health conditions. Of course, Victor is spot on! There is nothing simple about needing to navigate complex health settings and systems, yet most of our work to make it all make sense is not seen or recognised.

As soon as he said it, I realised that those of us with diabetes are hit with a double whammy. Not only is the work we do invisible, but so is our health condition. We don’t ‘look sick’. There is often very little to point to our diabetes and how it can challenge, frustrate, exhaust us. I frequently talk about what it takes to ‘do diabetes’ – the arduous, momentous, all encompassing tasks that it relentlessly demands of us. But how many people actually see that? Diabetes isn’t alone here; there are certainly other invisible conditions.

We need to exist and function within health systems that sometimes feel as thought they are working against us and as health becomes more and more corporatised, our frustrations grow. Perhaps it’s just me, but with every mission statement and strategic plan that promises to do better by people (with diabetes or whatever), all I seem to see is less recognition of what real life for us is like. My consulting side hustle often has me being asked to review these documents, and the question I ask most is ‘And what does this mean exactly for the people you are meant to be serving? How exactly are you going to reduce the burden?’ (or whatever it is that they have promised to do). In most cases they can’t answer and furthermore, there is a genuine lack of understanding of what that burden is.

Is making the work of being a ‘patient’ more visible to more people what is required to systems to change? I know that in the case of diabetes, it is those health professionals who recognise what we do to make our invisible condition tick are the ones who are often more generous in their dealings with us. My endocrinologist has frequently acknowledged just how much there is to do with diabetes, how hard it is, and understands that no one really wants to have to do it. She’s right. On all counts. But I wonder how she knows that when so many others simply don’t.

We regularly hear about how overworked healthcare professionals are and how our under-resourced health systems are working to capacity and I don’t for a moment doubt any of that. But you know who else is working to capacity? Those of us living with health conditions. But for us, looking after our health is a burden on top of ‘every day life’. It’s a job on top of our jobs. It’s just that we do it all hidden from plain sight.

The only way that the work we do will become visible is if we talk about it, and work to quantify it. Justin Walker’s comment at the DData event back in 2018 went some way to doing that when he said ‘By wearing OpenAPS, I save myself about an hour a day not doing diabetes‘. I can’t tell you the number of times I have quoted this because it shows two things: firstly, just how effective Open Source AID (and perhaps commercial systems too) can be at reducing the burden of diabetes tasks, and secondly, to highlight how much time those tasks take. Getting back an hour of my day, each day, has been brilliant. But there are still minutes lost every day to diabetes. And what we do during those minutes is largely unseen. It’s the invisible work Victor spoke of.

The invisible work extends to the hoops we need to jump through simply to exist. I hear from friends in the US the hours and hours of work they need to do to sort through health insurance issues. This week, I’ve spent hours upon hours of my time trying to navigate VicRoads (the state’s licensing authority) and the decision that, despite no changes to my diabetes, additional medical reports were necessary for me to keep my license. The final outcome was the sensible one – no need for anything further, after all – but it took emails, several phone calls where I was required to explain and explain and explain again, text messages to my endocrinologist, and my own inside-out knowledge of the guidelines before the right outcomes was reached.

I feel that as health system frequent flyers, we have simply come to expect that this is part and parcel of the process and I so appreciated Victor highlight the work, and suggest that the burden that has fallen to us should be remembered. I have thought about it a number of times since the event: after waiting for 45 minutes to see a nurse for a vaccine last week, only to be told the vaccine wasn’t in stock and I’d need to source it (even though I asked if it was available); as I raced between two different pharmacies to collect said vaccine after the one I called first didn’t have it available, despite them promising me they did just ten minutes earlier when I called, while listening to hold music as I waited for 15 minutes so I could speak with someone to reschedule a screening check that had been cancelled for no apparent reason, as I rearranged a meeting so that I could get to the local pathology centre for a fasting blood check (after being sent away the previous afternoon because I wasn’t aware that I needed to fast for that particular check). And while speaking to the third medical reviewer at VicRoads yesterday.

I don’t know anyone who wants to do the invisible work of being ‘a patient’. And yet, I feel that we all know that there isn’t a choice. We accept that the toils of managing diabetes persist, silently and profoundly hidden in the shadows. And feel locked into a contract that expects us to do hours and hours of work apparent to no one. Invisible, perhaps. But real? Absolutely.

Cartoon of doctor's weighting room. There is a person at the counter being handed a clipboard. The caption is 'Please fill out these medical forms which are identical to the ones you filled out earlier online and have the exact same questions the doctor will ask you later in the exam room'. — I saw this cartoon from the New Yorker today and it hit home with its relevance to how I’ve been feeling lately. It’s by Lynn I. Hsu. Click for details.

Compassion in care event

August 1, 2023 in Awareness, Events | Leave a comment

A very quick post to invite you all to attend a fascinating session being held tonight as part of the Nossal Institute for Global Health’s Navigating Health Globally webinar series. With the beautifully alliterative title, Compassion, Care, Complexity & Culture, we will explore how diverse healthcare approaches can tackle limited access to health systems and fragmented care, focusing on shared care as a means to foster person-centred systems as part of person-centred care.

I’m so delighted that I get to open the event with a talk about compassion in healthcare: what it looks like, my own experience of working with remarkably compassionate healthcare professionals, and also, the impact on our experiences of healthcare when compassion is lacking.

The other presenters are remarkable and I am so honoured to offer the lived experience lens on stage with them. You’ll hear from Professor Victor Montori, endocrinologist, researcher and Professor of Medicine at the Mayo Clinic, Duleep Allirajah, CEO of the Richmond Group of Charities (a coalition of 12 national health and care charities), Dr Guy Fones, Head of Global Coordination Mechanism on NCDs, World Health Organization and James Sanderson, Director of Community Health Services and Personalised Care, NHS England. Expect me to be totally fan-girling when Professor Victor Montori is up, speaking about his Patient Revolution (if you don’t have a copy of his book Why We Revolt, add to cart now).

I know that the healthcare experiences I value the most – the ones that have helped me, left me feeling inspired and supported, valued and listened to – have all been founded in compassion. Sadly, it’s not necessarily guaranteed. I’m looking forward to highlighting the experiences, (and the healthcare professionals behind them), that have been powered by compassion. I hope to see you in the (virtual) audience.

Kick off time is 8.00pm AEST, (or 10.00pm NZST, 6.00am EST, 11.00am BST, 12.00pm CEST). It’s free to attend, but you will need to register (to watch live, or stream later at a reasonable hour). Details are here.

Sign the pledge to end diabetes stigma

July 31, 2023 in Advocacy, Awareness, Communication, Community, Diabetes, Peer support, Social media, Stigma | 2 comments

Diabetes stigma is a hot button topic in the diabetes world. It has been for some time. I wrote just last month how stigma was one of the most talked about issues at ADA. That week, we also launched an Open Letter from the Diabetes Community, asking health professionals to join us in our call to stop diabetes stigma.

And behind the scenes, for all of this year, another exciting, BIG, project has been hatching and I’m so excited to share it today.

Earlier this year, in an unprecedented show of unity and determination, a group of 51 experts from 18 countries joined forces to pool our lived, research and clinical experience to address diabetes stigma and discrimination. Together, we’ve reviewed the scientific evidence and established an international consensus on 49 Statements of Evidence and Recommendations. The full report on this review has been submitted and is currently under review.

Excitingly, the group also reached a consensus on a Pledge dedicated to bringing an end to diabetes stigma and discrimination. And that’s where you come in! Everyone can sign to show your commitment stop the ingrained negative judgments, stereotypes, and prejudices that influence attitudes about diabetes, and contribute to the stigma so many of us face. This isn’t just for the community. We know there is sometimes an echo chamber as we say the same things to each other, over and over. We also know that while diabetes stigma is indeed prevalent within our community, we also need to tell the story of its harm outside the diabetes world.

Well, here’s an easy way to do both. Please sign the pledge and share details across your social platforms. You can sign as an individual, and we’d also love for you to see if your place of work, school, community group, hospital, church, sporting team, favourite cafe…basically anywhere that is likely to come into contact with people with diabetes (i.e. literally everyone!) would be interested in signing too.

This is a true community effort, with involvement from stakeholders from across the diabetes landscape, across the world. You won’t see logos anywhere, because this for and about all people with diabetes. The names of the people involved in the work so far is on the website.

Are you with us?

Social media tile. There is a blue background and it has the writing 'I took the pledge to end diabetes stigma' in white. In yellow there are two hands making the shape of a heart. The hashtag #EndDiabetesStigma is in the lower lefthand side and EndDiabetesStigma.org on the lower righthand side. — Click to take the pledge

Nostalgia on Threads

July 10, 2023 in Communication, Community, Diabetes, Peer support, Social media | Leave a comment

A few weeks ago, I saw a post on LinkedIn from Nick Dawson. Nick was around Twitter health communities a lot when I first joined and it was great to read his post and take a wander down Twitter’s memory lane.

The feeling of nostalgia was strong. I don’t remember joining Twitter, but I do remember when I started actually using it to connect with others with diabetes from around the globe and how my diabetes world suddenly seemed infinitely bigger. No longer was I constrained to only people in my own networks, or even my own country. I was a global citizen in the diabetes online world. And it felt great.

Twitter became the cornerstone of a lot of my own advocacy and connections online. I never missed a weekly #DSMA tweet chat, expertly moderated by Cherise Shockley. The rapid fire hour of diabetes power often included hundreds of people. Dana Lewis’ #HCSM weekly chats brought together from different health communities, opening my eyes not only to different healthcare struggles, but also to solutions that helped me with my own diabetes. I used Twitter to find people who were doing incredible things that elevated the voice of people with diabetes. It was on Twitter that I followed along with the first Roche blogger summit that brought together US social media pioneers. I used those sorts of events to shape the Australian Social Media Summit that was held at the end of 2012, coordinated by Diabetes Victoria, bringing together Australian diabetes social media folk and Kerri Sparling from the US.

I was part of the team that started the weekly #OzDOC tweet chats in July 2012, working with Cherise to help get things started close to home. Around the same time, the first #GBGoc tweet chat happened and the first #dedoc° chat, #FRDoc and #ItDOC followed soon after. Back then, those chats were brilliant at highlighting local issues, but by and large, they were indeed global.

Twitter was the tool I used to take notes at conferences, live tweeting sessions to share with those not in the room, and then pulling the information together in briefing documents at works, and writing articles here and on other platforms. And Twitter was the channel where remarkable whole community events happened. Remember Kelly Kunik’s #IWishPeopleKnewThatDiabetes and those #DayOfDiabetes discussions? Or the groundbreaking and overwhelming community event that was #Simonpalooza? It was peer support on demand. There was no need to feel alone with your diabetes if you were on Twitter!

And then, I don’t know when, Twitter changed. Or I changed. Or the community changed. It became harder to find the people who had shone so brightly and made Twitter a place of support and community. I stuck close to old friends who never advertised the Twitter following count, because who cared? I learnt the difference between an advocate and an influencer. And I started to steer completely clear of parts of the community which was so alien to what it had been like when I first joined. #DSMA chats became less frequent because Twitter chats became kind of old hat. #OzDOC chats completely stopped because there hadn’t been a sustainability plan in place and there really wasn’t anyone to take over. Perhaps this was a reflection of how the community wanted to engage and what they…what we…wanted.

For me, most of the day-to-day reaching out I used Twitter for moved to being via private channels. And that worked fine and became the same lifeline that the public space Twitter had once been.

There have absolutely been some bangers recently that have made me remember how great Twitter can be. The weekly #DiabetesChat, using Spaces, launched a new community that, although based in the UK, was very much global. Tom and the organisers went out of their way to include people from other places around the world to be interviewed and lead discussions. I loved it straight away for the beautiful open and welcome feeling that was there and embraced it. #dedoc° isn’t really a Twitter based organisation, but the #dedoc° voices use it brilliantly, and diabetes conference are so visible because of their prolific sharing.

In the last few days, a new Twitter-like app called Threads has been launched and I tentatively signed up and had a nosy look around. It felt like Twitter in 2012. Friendly. Fun. Open. I’ve found Threads friends (thriends?) who I’ve not seen around the Twitter traps for years and have re-engaged. I’ve managed to steer clear from the parts of diabetes Twitter that I’ve actively avoided over recent years.

It’s not perfect. There needs to be an option for people to add ALT text to photos, because that’s not there yet. Apparently it is coming. (But, you know, accessibility should have been a first level consideration, not an after thought…) A desktop version would be useful – it’s annoying only having the option to type on a phone keypad. The lack of hashtags is annoying. (Just today, I went back and read the tweets from that first Australian social media summit by searching the hashtag. What a treasure trove!) Again, this is said to be on the cards. As is the capability to see only threads from people you’re following rather than the mishmash right now. Having said that, sprinkled in amongst the predominantly diabetes focused threads I’ve been seeing, I’m not too disappointed with the cat pics, recipes and book recommendations that I’m seeing a lot of. Also pleasing is that I’ve managed to avoid so much as a hint of the crappy, manipulative, misogynist side of the diabetes world that clouded my Twitter experience for a while before I worked out how to block it out completely.

Is this the future of Twitter? Over here on this new app? Threads feels like the nostalgia Nick wrote about. It really does feel like the ghost of Twitter past and I like it a whole lot more than the ghouls of Twitter present. Come and visit if you’re not there already. I’m @RenzaS and you’ll see me sharing diabetes stuff, pet photos, books. And asking people about their diabetes experiences to help me make sense of my own. I hope to see you there!

The pie

July 8, 2023 in Advocacy, Awareness, Communication, Diabetes, Engagement, Stigma | 4 comments

All too frequently, when talking about meaningful lived experience engagement, I hear about ‘Hard to Reach Communities’. A number of years ago, I called rubbish on that, putting a stop to any discussion that used the term as a get out of jail free card to excuse lack of diversity in lived experience perspectives.

‘People with type 2 diabetes don’t want to be case studies’ or ‘Young people with diabetes don’t respond to our call outs for surveys’ or ‘People from culturally and linguistically diverse communities won’t share their stories’ or ‘Folks in rural areas don’t come to our events’. These are just some real life examples I heard when asking why there was no diversity in the stories I was seeing.

See how the blame there is all on the people with diabetes? They don’t want, don’t respond, won’t share, won’t attends. It’s them. They’re the problem. It’s them.

I stood on stage at EASD in Stockholm last year and challenged the audience to stop using the term ‘hard to reach’. Because that’s not the case at all. The truth is that in most cases, the same old, uninventive methods are always employed. And those methods only work for a very narrow segment of the community.

I recently heard someone begrudge that all applicants who responded to a recent call out for a new committee were the same: white, had type 1 diabetes, city-dwelling. ‘Of course they are,’ I said. ‘That’s the group that loves a community advisory council and responds to an expression of interest call out on socials. They are able to attend meetings when they are scheduled, are confident to speak up and are willing to share their story, because they probably have before and received positive feedback for doing so Plus, they’re expecting everyone else at the table will look and sound just like them.’

But the lack of diversity isn’t the problem of the people who didn’t respond. It’s the problem of whoever is putting out a call and expecting people to reply because that’s how it’s Always Been Done.

This was a discussion at a meeting during last week’s American Diabetes Association Scientific Sessions. The #dedoc° voices were meeting with the ADA’s Chief Scientific Officer, Dr Bob Gabbay, and Vice President in Science & Health Care, Dr Nicole Johnson. The question about how to reach a broad audience was asked. At #dedoc°, efforts have been made to attract a diverse group of people to our scholarship program, and have, to a degree there as been some success. A glance at any one of the #docday° events, or scholarship alumni will see people who had not previously been given a platform within the diabetes community. But there is always more than can be done.

The discussion in that meeting at ADA mirrored many that happened throughout the week. And it’s not surprising that US diabetes advocate Chelcie Rice came up with the perfect way to explain how to do better at engaging with the who have previously been dismissed as ‘hard to reach’. He said: ‘You can’t just put pie in the middle of the table. Deliver the pie to where they are.’ And he’s right. Those tried and true methods that work for only one narrow segment of the community have been all about putting pie in the middle of the table, knowing that there will be some people ready with a plate and a fork. But a lot of people are not already at the table, or comfortable holding out their plate. Or maybe they don’t even like that pie. But we never find out because no effort is really made.

Chelcie once said ‘If you’re not given a seat at the table, bring your own chair‘ and I’ve repeated that quote dozens, if not hundreds of times. And his words ring very true for people like me who have felt very comfortable dragging my own chair, and one for someone else and insisting that others scramble to make room for us. But that metaphorical table isn’t enough anymore. Not everyone wants to sit at a table and we need to stop expecting that. Instead, it’s time to find people where they are – the places, the settings, the environments they feel comfortable and at home. That’s how you do engagement.