You are currently browsing the category archive for the ‘Communication’ category.
I have a very scientific way of collecting info to share in these Internet Jumbles. I make weird notes on my phone that absolutely make sense when I note them down, and then make absolutely no sense when I revisit them to put together the latest edition. (Case in point: ‘DMK mine’ had me stumped for a few hours until I realised that was shorthand for the HypoRESOLVE piece on Diabetes Mine. The DMK is because the meeting was in Copenhagen. Of course it makes sense. Perfect sense.)
Half the time, even after trying to work it out, I still can’t understand my notes, so there is a shedload of stuff I wanted to share that is still a mystery trapped in my iPhone.
But! Here are the ones I was able to decipher. Buckle up…it’s a long one.
Ask patients? That’s novel
Results of a review of international literature examining patient involvement in the design of healthcare services showed that patient engagement can inform education (peer and HCP) and policies and improve delivery and governance.
I am always interested to read these sorts of articles, but must say, my response is often an eye roll and the words ‘No shit, Sherlock’ muttered under my breath.
Research and people with health conditions
What is the role of people with health conditions when it comes to research? This editorial from BMJ suggests that full partnership is the best way.
And this infographic from Public Health Research and Practice about how to involve consumers in health research is also useful.
Thanks for listening
It’s so nice when people actually take home some tips and tricks from presentations I’ve been involved in. This tweet over the weekend from diabetes educator Belinda Moore (referring to a symposium at last year’s ADS ADEA meeting in Perth in which I was fortunate enough to be involved) was gratifying.
Peer support remains an absolute cornerstone of how I manage my diabetes as effectively as I possibly can. It is those others walking the same road who help me make sense of a health condition which takes delight in confusing the hell out of me!
The driver’s seat
This post from Melinda Seed underlines why she believes that the idea of diabetes being a ‘team sport’ is not especially accurate.
Complications and language
The awesome PLAID Journal (which you really should bookmark and read) published a piece just as ADA kicked off about why we need to change the way we speak about diabetes complications.
The piece was written by me and Chris Aldred (AKA The Grumpy Pumper), bringing together Grumps’ #TalkAboutComplications initiative and my constant banging on about language. (I first wrote about needing to reframe the way we talk about complications five years ago in this piece. Every word still holds true.)
You can reads the PLAID Journal piece here. And please share. This is a message that we need to get out.
Wellness is not the same as medicine
My huge crush on OB/GYN Dr Jen Gunter only increased after she published this piece in the NY Times last week.
I have written before about how damaging the ‘wellness industry’ can be in diabetes, including this piece on the language of wellness.
Diabetes Voice reboot
The IDF’s magazine has had a reboot and is not delivered in a digital format. Check it out here.
Well, that’s candid…
This photo of Cherise and me snapped at Diabetes Mine’s DData Exchange is hilarious in itself, but Amy Tenderich’s caption is gold!
(Click for source)
Right device, right person, right time
Dr Kath Barnard’s piece in Diabetes Medicine Matters reiterates her message from the 2017 ATTD meeting (I wrote about it here) about the importance of matching the right device at the right time for the right person.
What are the barriers to preconception care ?
This piece was just published in Diabetes Research and Clinical Practice looking at the reason women with diabetes may or may not attend pre-pregnancy care. (I was a co-author on this piece.)
‘If only there was a….online community for people with diabetes’
That comment came from a HCP at a diabetes conference a few years ago – just after someone (maybe me? I can’t remember…?) had literally just given a talk about the diabetes online community.
The DOC is not new – it’s been around for some time – and this great piece from Kerri Sparling gives a history of the DOC.
HypoRESOLVE on Diabetes mine
I was interviewed by Dan Fleshler from Diabetes Mine about HypoRESOLVE. You can read his piece here – it gives a great overview of the project.
On a break
I’m going to be taking a little Diabetogenic break for the next couple of weeks. The rest of the year is shaping up to be super busy, so I thought I’d use the next fortnight to get myself organised.
I’ll be sharing some old posts from the Diabetogenic archives and expect to be back just in time for the Australasian Diabetes Congress which kicks off in Adelaide on 22 August.
In the meantime, be well and be kind to yourself.
Every second Saturday morning, I can be found at my favourite café having a very important date. Aaron has a rehearsal at that time each fortnight, so it’s become habit for me and the kidlet to traipse to the café for coffee, breakfast and a chat. (Judge me all you like – I gave in to the thirteen year old after a coordinated campaign from a number of people, including one of the owners of this café and the kidlet’s grandparents. Apparently it’s a birthright of kids with Italian heritage to be provided with legal stimulants from when they are children. At least, that’s the story they sold me…while they reminded me that I was drinking the dregs from my dad’s evening espresso before I could talk. Anyway, the outcome of their campaign is the kidlet sits there with her latte feeling all grown up while I silently remind myself caffeine is not crack in an effort to not feel like a completely negligent mother. But I digress…)
The kidlet and I spend quite a bit of time alone together. I often drive her to school or collect her afterwards, as her school is halfway between home and work. And we have a lot of evenings together while Aaron is playing a gig somewhere around town. But those car trips are rushed and usually involve checking off what is happening that day/homework requirements after school and those nights at home usually see us snuggled in front of the TV watching a favourite movie. I love these times, but they’re not really built for detailed conversations.
Our Saturday mornings are leisurely and free of screens. Other than greeting the staff at the café (one who has appointed herself as the kidlet’s ‘other mother’ – something our daughter is more than happy to endorse, because Jo is far cooler and more fun than me!) and said hi to the other regulars, we sit down and focus just on each other.
It is these Saturday morning catch ups that are the most revealing, and provide me with great insight into what ‘s going on in her life. With no need to rush and the comfort of being somewhere safe, she shares things that just wouldn’t be shared in the rushed car trip to school in the morning.
My job on these dates is simple. Listen. Nod my head so she knows that I am paying attention. Don’t impose my ideas on to her. Try not to be shocked when she says anything I wasn’t expecting. And when she asks questions, I try to frame my answers in a way that hopefully helps her feel supported and encouraged to make her own decisions, rather than trying to foist my own onto her.
A few weeks ago when I was seeing my endo, I realised that she takes the same approach with me that I do with the kidlet. I always feel that I have her complete and utter attention and I never feel judged by her. While she may want to just tell me what to do and have me follow it to the letter, she doesn’t do that. When I ask questions, she helps guide me to an answer that I feel comfortable with.
I really believe that my endo’s style has meant that I am far more confident about the diabetes decisions I make each day. Knowing that I have been able to troubleshoot, or make a choice after weighing up all the options gives me conviction and assurance that my decision-making skills are sound, all the time knowing that she is there if I need to ask something.
I am sure it’s no accident that I am this way with my kid. I’ve seen how effective it is in helping me do better with diabetes…and it’s certainly translatable to parenting a teen!
Recently when I was preparing a talk for practise nurses about the way for both HCPs and PWD to get the most out of healthcare appointments, I came across this:
Listening doesn’t seem to come easily or naturally to a lot of us. We want to jump in and interrupt. We want to offer our suggestions (because of course we know best!). We want the person to listen to us and do what we say. And we want to fix things. We so want to fix things!
But the best thing we can do in a lot of cases is to just shut up. I frequently employ the WAIT (WhyAm I Talking?) approach as I have found it is the best way to truly gauge what is going on and find out things that are too easily missed.
Those Saturday morning catch ups are illuminating for me. As well as seeing how my daughter is dealing with the sometimes tricky trials and tribulations of teenage-hood, I am being allowed a front row seat to a lot of what is going on in her life – things I may otherwise miss. Most of the time these days, she doesn’t need me to tell her what to do as she is working out stuff. She needs to feel safe, comfortable and not judged as she bounces her ideas off me; and to be given the space to learn how to weigh up options, make errors in judgement and work out what is best for her.
And that sometimes, making a decision that isn’t necessarily the best may not be the worst thing in the world. (At least – that’s what I’m telling myself when I see the look on her face as she takes her first sip of coffee for the day, and I know I have been complicit in her teenage caffeine addiction…)
I have always loved shoes. I have a killer collection that ranges from perfectly comfortable and sensible flats, to impractical, not all that sensible – but damn gorgeous – heels. My boot collection is enviable – current faves are the animal print stacked heel ankle boot, and tan coloured knee highs that wouldn’t be out of place in an ABBA revival band. Shoes can be works of art – the elegant black suede pumps with stunning bright coloured embroidered flowers now sit on a bookshelf, too worn to wear anymore, but too beautiful to throw out.
I remember the shoes I was wearing at important times in my life – they mark significant moments, sending memories flooding back to me. My wedding shoes were white satin pumps, comfortable enough to walk in all day long and dance in all night long. They are decorated with beads from my mum’s wedding dress and are still one of the prettiest pairs of shoes I have owned.
I dread being told by the podiatrist on my not-frequent-enough visits that I need to start to think about wearing more sensible shoes all the time. But so far, that’s not happened. She tells me that I can continue to go about wearing what I have, as long as I remember to regularly check my feet and get anything unusual checked out as soon as I notice anything.
I get to keep walking in my shoes, and not worry that the heel could be lower or less stiletto-y, the base slightly wider and orthotic-friendly.
I frequently hear cries for others to ‘walk a mile in our shoes’ as a way for them to get an idea of what living with diabetes is all about. It often happens after a particularly lousy piece of journalism that just gets diabetes wrong, or when yet another comedian makes yet another lousy diabetes joke. These days, it happens a lot when politicians say ridiculous things about why they won’t fund diabetes products, services or programs.
I guess the idea is that if someone walks in our (diabetes) shoes, they’ll know what diabetes is like.
I have no interest in people walking a mile in my shoes (or boots, more likely at the moment in freezing cold and wet Melbourne) because really, how effective is this idea in getting people to truly know what diabetes is like? What will someone learn in that mile, especially with the knowledge that they can take off my diabetes shoes once they’ve walked that mile…something that those of us living with diabetes can’t do.
Just like puppies, diabetes shoes are for life…not just a mile.
It’s for this reason that I have always questioned the value of hypo simulators. (I wrote contributed to a piece for Diabetes Mine a few years ago after first seeing – and sitting in – a hypo simulator at the first EASD I attended, and pointed out how absurd they are in my talk at the HypoRESOLVE kick off meeting earlier this year.) Anyone using the simulator can get out at the end of the demonstration and they’re done. There isn’t the thought of another simulator hanging over their head forever, or doing whatever is possible to avoid them – which is what living with diabetes and the threat of hypoglycaemia is like. Or suddenly becoming immune to actually seeing a hypo simulator until they find themselves in one, like what happens with impaired hypo awareness.
And it’s why I’ve questioning exercises where people are asked to wear diabetes devices for a few days. (Such as the time I was highly critical of a doctor who, in a piece about wearing a pump for a few days, declared she understood the frustrations of living with diabetes.) I remember standing in a room of first year med students explaining diabetes and as part of the talk, they were asked to do a blood glucose check and inject saline into their stomachs to get an idea of what we go through. Some of them refused, so perhaps the value of that session was explaining to them that those of us required to do such tasks don’t have the privilege of choosing not to because we don’t like needles.
My criticism of these sorts of activities is not to make people feel bad. I’m simply attempting to bring some perspective to what they can actually achieve. Suggesting diabetes is about merely wearing devices (or wonky vision when hypo) is reducing it to a condition that can and should be easily managed, and is easy to live with.
I don’t want anyone to walk in my shoes. I can do that for myself. But I’m always happy to have people walking alongside me. There is always room for that. Especially if we’re going shoe shopping!
A few years ago, I wrote this piece about why I am uncomfortable with the term ‘carer’. (I’m sharing it again below.) I often think about the word around Kellion Medal time, because there is a certificate given to ‘carers’ of medallists.
This is a lovely part of the ceremony, and acknowledges that diabetes can indeed take a village. Usually, the ‘carer’ is the partner of the person receiving the medal. Sometimes, it is a parent, sibling or other close relative. Other times, it is a healthcare professional.
Carer is a word with a broad meaning. It encompasses a wide range of situations and responsibilities.
As I said in the original blog post, I don’t believe that I have a carer. Aaron certainly supports all my efforts with my diabetes, is a wonderful cheer squad and knows when to mutter ‘Diabetes Sucks’ when I am feeling a little over the whole thing. I feel very fortunate to have him do that.
But carer? Nope.
It got me thinking to what I would want if (when?) I stand up to receive my Kellion medal. In thirty years’ time, I hope to proudly stand up there and appreciatively receive my medal. And in the room, I would want those near and dear to me, celebrating the milestone. I would certainly want to thank them for having lived alongside me as I lived with diabetes for so long.
But the word carer does not really adequately describe that role. And yet, I don’t know the word that does – or even if there is a word…
Words matter – so what is the right word?
So, please help me out! If you are an adult with diabetes, do you have a word you use to describe the people who support you? Are you comfortable using the word carer? Do you prefer to use something else? Or nothing at all? (Fifth option: Never even thought of it. Get over yourself with your language palaver, Renza!)
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I am lucky when it comes to my diabetes support network. I know this and I will say it several times in this post. I also know that I am likely to come off as being ungrateful which is not the case at all. Today, I want to explore the idea of how these support people are identified, either by themselves or by people living with diabetes. Specifically, I want to talk about the term carer.
The Oxford Online Dictionary defines carer as:
a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.
I don’t have a carer. I am the person responsible for living with my diabetes, but I do not have a disability and I certainly don’t consider myself sick. And, although I’m pushing a ‘significant age’ I am not yet elderly.
I understand and completely believe that there are people who are really and truly carers. There are people who are responsible for feeding, toileting, bathing, communicating for another who is unable to do it themselves. I am not referring to instances like this. I am referring to, I guess, diabetes.
I don’t consider my husband, who is involved in my life with diabetes to be my carer. He’s my husband, my partner.
Living with diabetes is not a solo game for most and this is a truly wonderful thing. We get support and help from people and I for one feel very fortunate to know that I have people (family, friends, healthcare professionals), I can rely on if I need them.
But I don’t consider any of them my carer. I would refer to them as my support network. In the case of my HCPs, they’re paid to help me with the things I need.
My husband would never say that ‘we’ are a family with diabetes. He would say that I (his wife) have diabetes. Not for one moment would he consider himself to be living with this condition even though he regularly is part of it. But as far as ‘ownership’ goes, it’s mine. He will step up as much or as little as I ask and in the few times it’s been necessary, he’s taken over, done what’s needed to be done and then, when safe, stepped back.
My independence and confidence in my ability to self-manage comes from being given the space from those around me to do what it is I need to do. I know there have been times when Aaron would like to sit me down and force feed me glucose because he can see that I am low. As I stand at the open fridge and in my hypo-fog state try to calculate the carbs in a cucumber (yes, I know!) he has had to just step back and let me work it out myself, stepping in if asked.
I see this like watching my daughter do something in a way that is frustrating to me. I would love to jump in, show her how to do it far more effectively (or do it myself) and then move on. But her self-confidence and her ability to trust her decision making process needs to be encouraged, not overshadowed by a parent who insists on taking over all the time which suggests that she cannot do anything herself.
To me, the term carer implies helplessness. I get that diabetes is a lifelong condition and that there are stages in a person’s life when they may need extra care. For example, children with diabetes are reliant on their parents for the day-to-day management tasks. But is that being a carer or is that called parenting albeit with an incredibly extra degree of difficulty? Or what about an adult with diabetes who is having a period of hypo unawareness and their partner is required to, at times, inject them with glucagon? Is this being a carer or is this just doing what partners do – look after each other at a time of illness or need?
What about when I am lying in bed, unable to move because my BGL is high, I have mild ketones and am vomiting? As I decide whether or not I need to take myself off to A&E, my husband is holding a bucket in one hand and my hair in the other. I don’t consider him to be my carer, any more than I considered myself to be his carer when he hurt his back and I was warming up a heat pack and giving him pain killers every four hours.
I don’t in any way want to undermine the importance, help or value of the support I receive. I don’t for a minute want to say that I don’t need it or resent it. But equally, I don’t want to be considered as being helpless. The relationships I have with people where diabetes is sometimes considered are based on incredible respect – from both parties. They respect that I am the one who is living with this and dealing with it and I respect the way they allow me to do that.
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Thanks to Ash for chatting with me over coffee about this today.
I met someone the other day – a friend of a friend – who had recently been diagnosed with type 2 diabetes.
Within the first 15 minutes of our casual conversation standing in the street as the Saturday morning rush happened around us, I heard these words from their mouth:
‘It’s my own fault. I should have gone to the doctor sooner.’
‘I am not a good diabetic at all.’
‘I am doing a really bad job checking my bloods.’
‘I’m not sure how long I need to keep checking my bloods. Or how often, really.’
‘I was told if I didn’t look after myself I’d need injections. I’m terrified of needles.’
‘I have a list of foods that I should and shouldn’t eat.’
‘I’ve never been sick before. And now I feel as though people think I am sick. But I feel fine.’
‘The doctor said I don’t have diabetes too badly, but then told me all the things that could go wrong.’
‘I am scared. I don’t know anything about diabetes, but I am scared that I am going to go blind. I was told that’s what would happen.’
Here was an incredibly confident, capable and clear thinking person, not much older than me. Until now, their contact with HCPs had involved annual flu jabs (kudos for that!) and a trip to the GP for the occasional virus. They told me they’d never spent a night in hospital.
The diabetes diagnosis came about after their GP suggested routine blood checks on the day they went in for their flu shot. The following week, they were told they had diabetes. This was just last week. So far, this person had spent about fifteen minutes with their GP and 45 minutes with the diabetes educator who works out of the clinic.
And look at how diabetes has been presented in that time. Already, this person feels as though they are a ‘bad diabetic’ and failing in their treatment. And they are scared.
I responded to some of those comments gently:
‘You DID go to the doctor – for your flu shot. And when they suggested you have a blood check, you did it there and then.’
‘You are doing a great job. There is no such thing as a bad person with diabetes. We do the best we can with the information at hand.’
‘This is all new. You are checking your blood sugar and that’s amazing. Well done. You didn’t have to even think about that two weeks ago!’
‘Do you have a follow up appointment? When you go back, as why you are being asked to check at the times they’ve suggested. And if this is something you’ll need to do for the next week…or month…or longer.‘
‘It’s perfectly understandable to be afraid of needles. I don’t know anyone who likes them. And you may need insulin one day. But not yet. And if you do, that’s not because you have failed. It’s because diabetes needs to be treated and sometimes with type 2 diabetes, (and always with type 1 diabetes) insulin is that treatment.’
‘Have you been referred to a dietitian? It’s really hard to change the foods you’re eating if you’re not sure about diet. Ask for a referral.’
‘I don’t really think of having diabetes as ‘being sick’, so I understand what you mean. But you will need to think about your health differently. That doesn’t make you a sick person, though.’
‘It’s perfectly, perfectly understandable to feel scared. If you think that having a chat with a psychologist or counsellor will help with that, ask your GP.’
‘Also … find some other people with diabetes and talk with them. Here’s my number. Call me any time.’
Imagine, if instead of feeling the way they were feeling, this person felt empowered, confident and assured – even if there was a bit of fear and uncertainty in there.
On the day we are diagnosed, we walk into the GP’s surgery not having diabetes. And walk out with a diagnosis.
It starts early. Those messages at diagnosis can impact how we feel about our diabetes for a very long times – indeed the rest of our lives.
Diabetes Week kicked off in the UK yesterday with the launch of their very own Language Guidance statement. Well done to all involved. It’s great to see another language document joining the movement started by Diabetes Australia back in 2011, and added to in recent years by the ADA and AADE (who presented their Guidance Statement last year), diaTribe Foundation (who has written extensively on the issue) and the Team Novo Nordisk (who developed a great guide for media reporting on the team.) And now, it’s great to see the UK on board, too.
Click to read the new UK Diabetes Language Matters guide.
In Australia, it’s been wonderful to see just how widely our statement has been used. Conference organisers have embraced the Diabetes Australia statement, including it in speaker packs, encouraging presenters to align their talks with the document. (The table which offers suggestions for words and phrases that can be problematic is a very useful reference tool.)
I can still remember the launch of the Diabetes Australia statement. It was at the State Library of Victoria which played to my word and book nerdiness almost perfectly. There could not have been a better setting for a media launch about words, language and diabetes.
Little did we know back then just how significant or far-reaching this document would be. At first, we were met with a lot of resistance, and people thinking that it was political correctness gone slightly mad. But we persevered and made sure that we were clear why this work was necessary.
I remember sitting in talks given by HCPs and flinching constantly as judgemental and stigmatising language was considered appropriate. Now, in Australia at least, it is startling when someone uses words such as non-compliant, because the ongoing, constant and committed efforts by many have completely changed the way that the words are used when speaking about and to people with diabetes.
While the official statement was launched seven years ago, the impact language and words have on diabetes was not a new area of discussion. People with diabetes have been talking and writing about how significant the (positive and negative) impact of words can be. I remember seeing discussions about it on the Reality Check forum not long after I was diagnosed, and speaking about it at events we ran back when the consumer program started at Diabetes Victoria in the early 2000s. We knew that words had power. We just needed to bring everyone on the ride with us to get them to understand it too.
And that’s why the Diabetes Australia statement – and all those that have come since – are so important. They provide a framework to refer to; something to hold up as an example of how things could be better.
Even though there has been a lot written and spoken a great deal about language and diabetes over the last seven years, we’re not finished. This is not a static movement. No one can for a moment think that we have ‘done’ language; there will always be new and different things to consider. Some particular areas of interest to me in recent times include the language we use when talking about hypos. And how we reframe the way we talk about diabetes complications.
I wrote this piece after the ADA Annual Scientific Meeting last year when I realised that we need to keep moving forward because there is still much to be done.
But while we do that, I believe it is important that we never deviate from the intention of the language matters movement. It is not about dictating to people with diabetes the words we can and cannot use when talking about our own diabetes, or criticising the words we choose to use. It is about framing the way people speak to and about those of us living with diabetes, and encouraging the use of language that is inclusive, engaging, non-judgemental, destigmatising and respectful. It is about using words that make us feel empowered, positive, hopeful.
Fundamentally, it is about making things better for us.
‘No one asks to get diabetes. And no one asks to be diagnosed with a diabetes complication.’
I don’t know how many times I have said these words – in presentations, casual conversations, in meetings. I feel like a broken record sometimes, but it seems that I’m not done saying it because there are still real problems with the way we talk about a type 2 diabetes or diabetes-related complications diagnosis.
Both are discussed as an end point. And often an end point following failure which is so problematic that it makes every single part of me wince.
‘You got type 2 diabetes because you did/didn’t do this, this and this….’
‘You developed a diabetes-related complication because you did/didn’t do this, this and this.’
And then…there is nothing. There is nothing about what happens next: who to turn to, what help is available, ways to live well. Just some blame and shame and a massive spoonful of guilt, too. You’re welcome!
We need to change this. How different would things be if news of a type 2 diabetes or complication diagnosis was not accompanied with finger pointing at all the things that got us to that point, but instead an acknowledgement that this may feel scary, and a helpful list of what is available to help us.
Being diagnosed with type 2 diabetes is not an end point. Neither is being diagnosed with a diabetes complication. It’s a transition. And at that transition point, we need hope. And to know what’s next. (Cue: Snuffy Walden.)
We have a beautiful tree over the back laneway at our place. Usually at this time of the year, it is in full autumn brilliance. The red and gold leaves catch the gorgeous afternoon sunlight, and where the leaves have already littered to the ground, the branches are bare.
But this year, things have been a little different. Our tree brought out its autumn clothes a much later than usual, but sure enough a couple of weeks ago, we noticed that the leaves were beginning to turn. Every day, I’d look over the fence to see a deeper red, a more golden glow. Sure, we hadn’t needed to turn the heating on inside the house yet, and my really warm knits were still tucked away in the cupboard, but the tree was promising winter and cooler days.
Blossom buds. In May…
Over the weekend, as I sat in the kitchen, the back door open letting in a lovely breeze, I looked up at our tree. And there, on the bare branches, I could see something shooting. I went outside to have a closer look and realised that what I could see was the start of the blossom that comes out in the middle of springtime.
Our poor tree was looking mighty confused. I was confused. This isn’t how things go. The seasons are meant to be somewhat regulated and ordered. I like order. Order makes sense. This didn’t make sense at all to my brain, which likes things to be as they should be!
This wasn’t the only confusion I dealt with this week. Last Friday, I spoke about DIY diabetes technology at a health professional event and there was a lot of confusion.
I only had ten minutes (seriously not long enough to talk about something that is a completely novel concept to most of the audience), so I spoke fast, waved my hands around faster and tried to simplify the whole idea of looping into about 8 slides. ‘Renza will be around afterwards if you have questions,’ the emcee announced to the audience who all looked slightly bamboozled and winded after I finished.
There were questions. Lots of them about how Loop works, what it really is and who can use it.
But the one thing that seems to garner the most confusion is the cost. ‘You didn’t say how much has cost you,’ a few people said to me once the event was finished. Actually, I did. (Admittedly, very quickly, because: 10 minutes!) ‘Well, you need to source a pump that works, so that may be costly. And if the person using it is over 21, they will need to fund CGM themselves. Plus, the Riley Link is about $150 and there is a cost associated with becoming an Apple developer,’ I repeated what I’d said in my talk. (Obviously, I was talking Loop, but there was an OpenAPS user in the room too and I think he may have answered a couple of questions about the cost of his set up.) ‘No, no…what about the actual cost to use the app? How much does that cost?’
I have had this question asked probably more than any other. For some reason, people don’t seem to understand the concept of open source information sharing. No one is making money through this. The clever people who have developed DIY diabetes solutions place the details online for anyone to see and use. For free.
But this seems to be a confusing concept for a number of people.‘Wait. So no one is making in money from this? What about the people who worked it out in the first place? They are. Right?’
‘Nope,’I always reply, wondering how many ways I need to say it (along with wondering why I am so lousy at communicating things and also, if my hands waving around are distracting people).
Inevitably, the next comment is ‘Well, I’m not sure why someone doesn’t try to commercialise it. That would get it through regulations, wouldn’t it?’
At that point, it’s my turn to look confused. Why is it so difficult for people to understand that there are actually people in the world who genuinely want to do something good for others? Or that the WHOLE point of the #WeAreNotWaiting ‘movement’ is the fact that there is no waiting for regulations that are inevitable with commercialisation?
I guess that unless you are part of this community, it could be difficult to understand. But the generosity of those in the community is on show all the time. Whether that be the people doing the grunt work behind the scenes to make the dreams of DIY diabetes a reality, or the people who are then writing the step by step instructions so even fools such as me can follow those instructions, or the incredible community members who are ready to jump in any time to answer SOS calls for help when something doesn’t seem to be working, these people are doing it all for nothing more than the gratitude of those of us who are reaping the rewards of their cleverness and kindness.
The confusion – and disbelief – about this community is confusing to me, because every day I see how incredible it is. I only wish I was smart enough to give back even a fraction of what I have received from those brilliant folks who are there for the rest of us. And I really wish I was able to do a better job explaining what a marvellous bunch of people they are!
It’s easy to remember the difficult moments we’ve experienced at the hands of healthcare professionals who have been less than kind.
And, equally, we remember those moments where kindness was shown in spades.
I know I certainly remember moments of kindness in healthcare. And those moments transformed me. I so appreciated the kindness that came from HCPs at moments when a tsunami of grief or despair or pain or a diagnosis washed over me, knocked me to the ground and left me doubtful that I would ever be able to get back up again.
I remember kind words, the silences afforded to me giving me a moment or two (or dozens) to think, the time I was given to understand what was happening and formulate a plan to manage… I remember them all because they left me stronger, more determined, better supported and far more empowered to cope.
Kindness is a highly underrated quality in healthcare. I’m not sure how it should be included in a curriculum full of critically essential information, but it needs to be taught from the very beginning of any healthcare courses, and it’s importance highlighted and stated over and over and over again.
In the last year or so, I’ve read a few books written by (as the publicity often claims) ‘healthcare professionals turned patients’. (I’ve found this to be quite an odd term, because surely everyone at one point or another has been a patient.)
A recurring theme throughout the books is how difficult the HCPs have found it being on the other side of the HCP / patient divide. They often appear astounded at the red tape and bureaucracy they came up against, the hoops they need to jump through to receive the appropriate care, and the sheer unfriendliness of the system. And they write about the extraordinary moments of kindness that often feel far too infrequent.
Sometimes, they have written about how they didn’t realise that the way they themselves behaved could be interpreted as having a lack of consideration and kindness – explaining it was simply their manner and how they made sure they got through the day as efficiently as possible in a system often built on the foundation of complete and utter inefficiency. And yet now…now they understood.
While the books I read have been beautifully written, heart breaking at times, and often end terribly, the stories in them were not surprising. They tell truths about the system – and the lack of kindness – that people with diabetes face every day in every encounter.
When Kate Grainger launched #HelloMyNameIs, she was echoing the calls of countless people before her: please treat us like people. Please tell us what you are doing here. Please know we are scared. Please tell us who you are and what your role in my care will be.
She did it beautifully, simply, eloquently and changed the landscape of healthcare communication. I am so sad that she had to be so ill for this to happen. But her legacy is one for which I am so grateful.
Kindness in healthcare makes all the difference. Some may think it is completely unnecessary and that as long as we are receiving the right diagnosis, good care and excellent treatment, there is nothing more we need. But that is not true. Kindness adds a human element. We need warm hands, warm hearts and warm words alongside the cool tech, sterile environments and scary diagnoses.
Kindness takes no more time; it takes no more effort. But it’s effects can indeed be monumental.
New year, new jumble. And lots of saved links from the last few weeks to share.
#OzDOC 2.0
Did you know that after OzDOC had it’s ‘final’ tweetchat at the beginning of December last year, it’s had a reboot and is now continuing to go at a great rate. David Burren (AKA Bionic Wookiee) kicked off the chat but is looking for people to volunteer to the moderators’ roster. There’s a brand new Twitter account to follow (@OzDOC_host), but the #OzDOC hashtag continues to shine brightly.
Same #OzDOC time, same #OzDOC channel. (i.e. Tuesdays at 8.30pm AEDT)
And while we’re talking tweetchats…
…make sure you keep an eye out on the #GBDOC tweetchats, which also had a bit of a restart last year and are going absolutely brilliantly. Follow @GbdocTChost for topics and moderators.
Now is a great time for Aussies to participate in #GBDOC because with the time zone difference, the chat is on Thursday 8am AEDT…which is actually quite pleasant. (It all goes to pot and becomes more difficult when daylight saving kicks in/out in respective hemispheres in coming months, but for now, it’s certainly manageable!)
Jane’s profile
It’s no secret that I’m a huge fan of Professor Jane Speight and I make no apologies for mentioning her so frequently on this blog. She is truly a champion for and of people with diabetes and her pioneering work on diabetes and #LanguageMatters, and social stigma are changing the landscape for those of us living with diabetes.
Last week, a profile of Jane and her work was published in The Lancet. Congrats, Jane. I can’t imagine a more worthy recipient of this attention. Please keep on keeping on. I for one am very grateful to have you on our side!
Read the article here – it’s free, but you will need to register/log in to access it.
(Click photo for source)
Dear ‘patient’
I was really interested to read this BMJ Opinion piece about medical letters, with the writers suggesting that instead of addressing ‘report letters’ to referring (and other) doctors and HCPs, that they should be addressed directly to the person, CCing in the doctor who would ordinarily have been sent the letter.
I love that idea! My endo generally copies me in on anything she sends out to my other HCPs to keep me in the loop, but I think that actually writing directly to me is even better.
HCPs would need to completely reconsider the language they adopt, the terminology they use and the overall tone of the communication, and I believe that there is nothing that should be shared with another HCP about me that shouldn’t be shared directly with me.
Interesting idea. And interesting to see if it has legs…
Writing for Grumps
After writing for me a few weeks ago, I returned the favour and wrote a post for The Grumpy Pumper. (I think the deal he made was something like ‘I’ll show you mine if you show me yours’, so I had to come up with the goods.)
This is all part of Grumps’ attempts to get people with diabetes speaking about #TalkAboutComplications in an open and honest way to help reduce the shame that seem to go hand in hand with a complications diagnosis.
Get ready for Spare a Rose spam
This year’s campaign is about to kick off. And if you want to know why I support this campaign, here’s just one reason.
Hospital admissions and T1D study
Rebecca Munt from Flinders University is currently enrolled in a PhD at Flinders University and is looking for participants in her research.
The focus of her study is to explore the experiences of self-management for adults with type 1 diabetes in the hospital setting (when T1D is not the primary admission diagnosis). If you’re interested in participating in Rebecca’s study, have type 1 diabetes, are over 18 years of age and have been admitted to hospital within the last two to five years (not for diabetes), please call Rebecca on (08) 8201 5749 or email rebecca.munt@flinders.edu.au
(The project has Social Behavioural Research Ethics Committee approval from Flinders University.)
Future of medical conferences
I have been very vocal in recent years about the shortcomings of diabetes conferences, specifically the lack of involvement and engagement of people with diabetes as part of the planning, running and presenting of the conference. So this piece really resonated about why medical meetings need a revamp, and some ideas for what could be done differently.
(Click for original tweet)
Because #NothingAboutUsWithoutUs.
Does the story we know and love about Banting need a rewrite?
I was fascinated to watch the short documentary shared in this story which suggests that the frequently-told story of the discovery of insulin is missing out a critical part.
It was the best of times, it was the worst of times…
This blog post by Sue Robins detailing two vastly different medical appointments is compelling – and quite heartbreaking –reading.
More D Merch
Totally true!
Click image to get your own!
Diabetogenic 