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Last Friday, I took part in my first Facebook Live chat as part of The Lowdown campaign. (If you’ve not watched the Facebook live chat, you still can by clicking here.) I was joined by former AFL footballer, Jack Fitzpatrick, who has lived with type 1 diabetes for about six years.

Jack and I could not be more different. He speaks a language of sport of which I know barely one or two words. His perspective of the first few years of his life with diabetes are very, very different to mine. He talks about how, thanks to his workplace – and AFL football club – he had a doctor and dietitian working with him every day. He worked out how to fit diabetes into his job with the help of HCPs that most of us see a few times a year at the most.

But there are also similarities. We were both diagnosed as young adults and we had to learn how to manage a very demanding health condition at a time when there is far more fun to be had. On Friday, we spoke about hypos, and his stories made complete and utter sense to me.

The Lowdown campaign is a beautiful story telling initiative. That’s what has happened over the last week – PWD told their stories about hypos and time and time and time again, there were comments from other PWD who recognised that story. We recognised the way our heart might beat faster, or the confusion that heralds plummeting glucose levels. We nodded as we heard about people over-treating, because in the moment, that is all we feel we can, and must, do. We smiled at the silly things we read others do when low, (hello, HypoBoy).

Every time I saw a comment from someone who said a version of ‘That happens to me too!’ I felt tingles. That connection comes only when we feel that we are not alone, that someone understands what we are going through. I get it – it’s why I read diabetes blogs and listen to diabetes podcasts. I’m looking for real life, authentic stories, the lived experience.

As I said in the Facebook live chat, this campaign is a form of peer support. Because that is exactly what is happening – people with diabetes supporting each other, using stories that resonate, make us feel like we part of a tribe, helping us understand that our way of dealing with something is just as legitimate as anyone else’s.

We all do it – we all seek out those that stories mirror our own. That doesn’t mean that we have to think the same way or do the same things or feel the same way. It’s not about there being a one size experience or everyone having the same thoughts and ideas. In fact, the diversity in what we see and read is important because it means that we can find the ones that we connect with most and help us better make sense of our own experience.

Too often, the story of diabetes is told using statistics. That is the way researchers and healthcare professionals and governments talk. But for those of us actually living with diabetes, it will never be about the one in how-ever-many-thousand. We don’t want to hear how the dice is likely to roll or how the numbers keep getting more and more stacked against us the longer we live with this condition. We don’t connect with data, statistics or numbers. We connect with people and to their stories. That’s what we need to tell. And that’s what we need to hear.

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These days, it’s impossible to be at a diabetes conference and not have at least one conversation somewhere about language. Sometimes there are sessions dedicated to the topic on the program, but that wasn’t the case at ATTD a couple of weeks ago – a conference solely devoted to advancements in diabetes technology and treatments.

But despite there not being a session about language, it was still a hot topic. My eagle eye was trained when walking through the exhibition centre for examples where diabetes is misrepresented or the language used stigmatises people living with the condition. And in sessions, I immediately heard terms that suggested that we are misbehaving because the results of treatments aren’t living up to their promise. (A new one: I heard the statement ‘People with diabetes on <therapy> were not performing as expected’ which now makes me think that we are being trained, watched and judged by pageant mums/moms.)

At the Ascensia Diabetes Social Media Summit (more on that another day), there was a discussion about language and diabetes-related complications. This event was a follow on from the one we had at the Australia Diabetes Social Media Summit, and took the initial conversations and expanded it with a new group of PWDs.

Once again, as the discussion unfolded, it was clear to see that the PWD in the room all had experiences where the language they were faced with had impacted negatively and positively. One person commented that early on in their diagnosis, a health professional had addressed diabetes-related complications by saying ‘If you are diagnosed with a diabetes-related complication it will not have been your fault.’ What an empowering way to begin the discussion about complications, care and risk reduction!

I’ve been talking about language for a number of years. Some may call me a one trick pony and, honestly, that’s fine. My appetite for the subject matter has not diminished one bit despite more than a decade of speaking and writing about why language is so important and holds such power.

Language is not a one dimensional issue. Additionally it does not necessarily have a ‘right way’ to do it – especially when looking at it from the perspective of the person living with diabetes. The work I have been involved in has never been about policing the words used by people with diabetes, but rather how words used by others affect us.

It’s why the piece Grumps and I wrote for BMJ  was important – it targeted healthcare professionals, explaining to them why the words and language used around diabetes-related complications needs to not make us feel hopeless. Because that is what can happen and when we feel that way, it is all too easy for diabetes to seem just too big and too hard and too much.

I have frequently written about how diabetes can become so overwhelming, that it can leave us unable to attend to even the most basic and mundane of diabetes management tasks. I myself have been paralysed by the detail and demands of this health condition. I understand that there are times when a conversation about language is not possible, because, quite frankly, there is a lot more to deal with. I know that there have been moments when even though I can hear judgement and blame in the words being directed at me, all I want to do is find a way out of what feels like a hole. I’ve heard others say that they have felt harshly treated by HCPs, but simply didn’t have the capacity to try to deal with that because there were other things higher up on the list.

And I am sure that there are people who simply wouldn’t even know where to begin if the words and language being directed at them were disempowering and negative.

But that is exactly why language matters. It is for the people in those situations – for me when I was in that situation – that we need to get the way we communicate about diabetes right.

I am so sick of people trying to delegitimise the language discussion, or, even worse, reduce it to something that is insignificant. It frustrates me when the discussion returns again and again and again to the diabetic/PWD debate. As I said at the Ascenisa event at ATTD when we were discussing the annoying way some try to redirect meaningful discussion back to this single issue: ‘You can call me Blossom for all I care, language is about far more than this.’

And I think that while it is critical that we acknowledge that sometimes the language issue isn’t going to be a priority for some (by choice or otherwise), it seems unfair – and a little counter-intuitive – to diminish its importance, or criticise those of us trying to keep it on the agenda and actually do something about it.

(Click for original tweet)

DISLCOSURE

I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference. 

Last week, the BMJ published a piece I wrote with the Grumpy Pumper. It was part of their ‘What Your Patient is Thinking’ series which includes stories from people sharing their experiences of living with a variety of health conditions, or using health services.

We wrote about the intersection between language and diabetes-related complications and why language matters so much any time this topic is raised. This is our latest piece on the issue (read the PLAID Journal article here, and something we wrote for diaTribe here). We may appear to be one trick ponies, but it seems the appetite for this issue has not in any way diminished – which is good, because there’s lots more to come! (We’re not one trick ponies – I for one can talk for hours about why the fax machine should be made extinct in healthcare.)

It’s been fascinating – and a little overwhelming – to read the responses to the article after it was shared on a variety of social media platforms at the end of last week, and then again over the weekend. It’s also been heartbreaking when people have told stories about how HCPs have spoken about diabetes-related complications in ways that have had negative effects.

It’s refreshing to see many HCPs (including those from outside the diabetes world) sharing and commenting on the article. Much of what we have written is applicable beyond diabetes. It doesn’t matter what health condition someone is diagnosed with; everyone wants to be treated with kindness and compassion and to not be blamed or shamed.

A couple of HCPs have said that after they read the article, they will now consider changing the way the speak. I love this piece from a CDE in the US who said that she honestly thought the words she was using when discussing diabetes-related complications were reassuring until she read our perspective, and now understands that there are better ways to frame the conversation. We only hope that this will lead to PWD feeling less judged and more supported, and not afraid to talk about what is still a taboo topic for so many.

The diabetes and language landscape is broad. I know that there are many who roll their eyes and say that actually, language doesn’t matter, and perhaps we should be focusing on more pressing issues, but I wonder if they are perhaps focussing on issues that they don’t think are really important.

But there is a lot more to this issue than, for example, the debate between being called ‘a person with diabetes’ or ‘diabetic’ – or if it even matters. Regardless of what the specific issue is, we are hoping is that people understand that words really do matter; they have far-reaching consequences; they determine how people feel about their diabetes; and that the right words have the potential to make people feel better equipped to manage their diabetes as best they possibly can.

Please read the BMJ article – it is freely accessibly – and share it with your networks. If you have diabetes, take a copy to your next HCP appointment and leave it for them to read. The way that we make real, sustainable change is to keep pressing a point, and explain why it is important. Hopefully this piece has gone some way to doing that.

The illustration that was commissioned for the print version of the article. Artist Rose Lloyd did such a great job of getting across the messages in the article!

It’s hot in Melbourne today and it’s going to get warmer over the next few days. I’m loving the bone-warming sun that just makes everything look so sparkly and bright. So, I’m spending as much time as possible soaking up the rays (and adding to the ridiculous tan mark around my Dex), because the cooler weather will be here before I know it. I’m trying to build up those vitamin D stores to last me for when winter hits here and I’m reliant on quick trips to the northern hemisphere for work to see the sunshine and warmer temperatures.

Anyway, diabetes doesn’t take a break over the summer. Or winter. Which means, there is always lots to read and see about it. Here are some of the things I’m catching up on now.

Hospital life in pictures

This piece from the guardian will break your heart. Explained pictorially, it’s easy to see that the medical system is broken, medical education is broken, hospitals can be incredibly cold and anxiety inducing places, doctors are at breaking point. And patients in the system are left to deal with the fallout from the disarray.

IDF comps

The International Diabetes Federation is working to reduce the stigma association with diabetes-related complications, with a focus on how the language used can make people feel judged and stigmatised. Last year, they launched the #DiabetesComplicationsTalk Facebook page, encouraging people with diabetes to share stories and support each other.

It’s really great to see the IDF in the #LanguageMatters space, encouraging people to openly speak about diabetes-related complications to help reduce the stigma associated with them. More here.

Diabetes Voice

Still on news from the IDF, the organisation’s quarterly magazine is now available electronically. The first edition is an absolute cracker. Start with this incredibly powerful piece from editor, Elizabeth Snouffer, about diabetes-related stigma. Read it. Share it.

Patient Revolution

If you’ve not checked out the Patient Revolution website, now is a great time to have a look.

Start with this page, which is a library of stories you can click through, finding any specific topics that you are interested in.

Also, there is a Patient Revolution chat which uses the hashtag #WhyWeRevolt. To keep up to date with their chats, and to take part, follow @PatientRev on Twitter.

1,200 mason jars

Do you ever find yourself in the midst of a Twitter thread, wishing, in equal measure, that you hadn’t started, but can’t get enough of it? Sometimes these threads are diabetes-related; sometimes they’re not. Go here for one that is definitely not.

I have spent far too much time in the last week invested in this bizarre tale. There is a lot to take away from the whole saga – maybe starting with: don’t pay USD$169 to hear someone ‘teach’ you how to ‘be you’. And there are a lot of unanswered questions, such as what the hell is going to happen to the mason jars.

Happy reading. (You may need a drink …)

Diabetes in the US

I will never understand the US health system. My head and heart hurt as I hear the struggles of friends with diabetes, and the difficulties they have accessing insulin, and diabetes tech and supplies.

This piece from the New York Times talks about non-medical switching, where insurance companies decide which drugs (and devices) they will cover and subsidise. In Australia, the government decides which drugs will be listed on the PBS (Pharmaceutical Benefits Scheme). If a drug is on there, it is the same price for everyone who has a prescription. There are some drugs that require a special prescription to be provided at the subsidised price. But there is no extra negotiating or pleading, or any involvement, with insurance companies.

In a system that is broken beyond measure, this seems like one more roadblock to make just surviving with a condition such as diabetes impossible.

Going beyond

Beyond Type 1 has grown to include a new platform for people with type 2 diabetes. Check it out!

Real life Loop stories

The team at diaTribe has a new series of personal stories of people who have been using DIYAPS solutions. Adam Brown’s story was first, and Kelly Close has now offered her experiences. Such a great idea to get a number of different insights into what has worked, what hasn’t and hopes for the future of DIYAPS.

Sharing and caring

Also from diaTribe, this great piece from Kerri Sparling which provides her own and others’ perspectives on sharing of CGM data. There is no one way to share data – it is personal, individual and can change over time, depending on circumstances. Some choose to; others don’t. I love this piece because it is balanced and offers some interesting thoughts.

Ascensia and CGM

More tech choices for people with diabetes is always great to hear, so Ascensia’s recent announcement of their move into the CGM market has been met with enthusiasm from the community. Read their release here and Diabetes Mine’s take on the announcement here.

SoMe at conferences

I believe social media engagement and use at all health conferences is a critical and necessary part of any communication strategy. There is no better, easier or more effective way to share details of the conference that by encouraging the people attending to broadcast using their own social media networks.

This article explores that, referencing the ridiculous photo ban at ADA in 2017 (which thankfully was changed in 2018).

Menopause and T1D blog

Sarah Gatward is a blogger from the UK and she is writing a series sharing her experiences of living type 1 diabetes and going through menopause. Yes! And thank you, Sarah. Start here.

NDSS reminder

Now is a good a time as any to make sure your NDSS details are up to date. Remember – the NDSS is not just about subsidised diabetes supplies. It also provides information and support for people affected by diabetes.

Go here to make sure your registration details are correct.

Bin the fax

All my dreams came true when I read this article in the Limbic today! Finally calls to get rid of the archaic fax machine in health care. Halle-bloody-lujah!

 

Last November I spoke at the HIMSS (Healthcare Information and Management Systems Society) conference in Brisbane (and wrote about it here). I was only flying up for the day and my schedule had been diligently planned but the HIMSS team, utilising every single moment I was at the conference centre. I was in two sessions, but before that, I was to be filmed for HIMSS TV.

Best paid plans, and all that – my flight was delayed. By quite a bit. The interview would need to be rescheduled. I landed, unsure if I would make it in time for my first talk, and begged the taxi driver to do all he could to get me there on time. The man was a miracle worker, delivering me to the conference centre five minutes before my first session started, and I walked onto the stage with the sound guy’s hand halfway down my dress (the back of it, settle down), mic-ing me up as the chair was introducing the session.

As soon as the second session was done, I was whisked away for the interview. We were running through the conference centre halls (this time the sound guy was trying to retrieve the mic he’d affixed on me earlier – we’re now very good friends), to get to the interview area.

I had literally 15 minutes before I needed to get into a cab to head straight back to the airport for my flight home, but the HIMSS team was determined to get me chatting on camera. Good thing I talk so fast.

Also, good thing that I was asked to speak on a topic that I could happily blab on about for hours. While underwater. I was there to speak about person-centred care in healthcare.

I find it a little odd that the title of the interview is ‘Disrupting diabetes treatment with a person-centred approach’, because we have been talking about this for a long time. This isn’t new; it’s not disruptive. But clearly, it’s still something that we need to be talking about, because I think that there is far too much lip service and not enough action when it comes to patient-centred care.

I’d completely forgotten all about the interview until someone tagged me in a post on Twitter and LinkedIn when the interview was launched just after New Year. You can watch it by clicking on the image below. I talk very fast…I had a plane to catch.

 

The other week, as I sat on the stage as part of a panel session at the HIMSS conference in Brisbane, a term kept getting thrown around that had me squirming in my seat. It was not said with any malice – in fact I believe it was being used under the perhaps misguided idea that it is represents positive and empowering language. But as I sat there and the term was being used, almost with abandon, I knew that we were going to have to have a chat about it. As per exhibit A:

Exhibit A

Activated patient? No. Just no.

When the moment was right, I took a breath. I’d been asked to comment on the current My Health Record situation, and whether I thought it was something that would benefit people living with chronic health conditions. ‘Before I answer the question, can we just consider the term ‘activated patient’ and how it is being used here today – and often in other contexts too. I’ve heard from people on the stage and in the audience use the term ‘activated patients’. I’m really not a fan of this term. In fact, I think it is really quite problematic.’

Activation is something that is done to something. Think Pete Evans and his activated nuts. Or yeast when making bread or cinnamon buns. Or my pink debit card that came in the mail with a sticker across the front telling me how to activate it. Pete Evans’ almonds were just passive little nuts before he decided to activate them. And before the warm water was added to the yeast, it was just powder sitting in a sachet. My pink card was simply a piece of plastic before I called a number, pressed a few other numbers once the automated message was played and agreed to a heap of terms and conditions, making the card able to work.

Those inanimate objects had something done to them to become activated – it didn’t happen on their own. Beforehand, they were passive.

I was not ‘activated’ to become a participant in my own healthcare. I was not given permission to lead the agenda of how I want to engage. I chose the people I would see; the health service I would use; the devices I wear strapped to me. I have never been a passive participant in my healthcare – or any other aspect of my life, for that matter. I have always been active. Of course there are times that I struggle with motivation and may be less active and pro-active, but getting out of those times was never an exercise in activation by others.

The idea that people become activated because they are given the opportunity reeks of the typical paternalistic attitudes that are still rife in healthcare.

Look, we can have a long discussion about the ‘consumerisation’ of healthcare, and how that is what is to blame for terms such as this. It is business lingo and while many think it probably refers to people being in charge of their health, it actually suggests the opposite.

Words that suggest something is being ‘done’ to a person utilising the health system are not empowering. They are not putting the person at the centre. They don’t indicate that the person is driving their care.

The term ‘activated patients’ provides a narrow interpretation about how a person is in charge of their healthcare, because it always is used to highlight people who are loud advocates for themselves, walking into every appointment with a list the length of their arm of things to discuss, therapies they want to use. But not everyone wants to do healthcare that way. Just because someone prefers – and chooses – to have a healthcare professional drive the direction of their care does not necessarily mean they are not ‘activated’.

Also – consider this: if a person can become an ‘activated patient’, that means there must also avenues for them to become a ‘deactivated patient’. That’s certainly not being person-centred. In fact, suggesting that we become something only because we have been given the right to be that way is the opposite of person-centred.

Oh, hello! It’s World Diabetes Day this week. And that means one thing and one thing only: diabetes will be elevated to health condition of the week, and we will see it EVERYWHERE.

I recently wrote that I’d been a little out of sorts a couple of weeks ago. I’m back to my usual robust and resilient self, but on the way back, I seem to have misplaced the filter that usually muffles the directness for which I am sometimes pretty much always known.

I realised it was missing when I was speaking at HIMSS last week and I was pretty direct when talking to some app developers. Instead of doing my usual sandwich feedback (i.e. something positive to begin with; suggestions for how it could be better in the middle; something positive to round it out, all with what could be considered a Dolores Umbridge smile on my dial), I went straight for the filling of the sandwich.

It turns out that without my filter, my comments eschew (rather than chew) bread and are all about the meat in the middle. I become totally low carb in my feedback. And I lose my smile. (A doughnut would probably bring that back, though…)

For this week, we will be banging on about the need for diabetes awareness. Of course, this morning as I was dressing and tucking small vibrating or lighting up boxes and infusion sets into my bra, and checking the tape on the CGM on my arm, while wondering if Loop really did have that downward arrow on my Dex under control, all I could think of was diabetes to the left of me; diabetes to the right. And I’m stuck in the bloody middle with it because it won’t leave me alone. I can’t help but be diabetes aware. All the fucking time!

But this week isn’t about us, (this piece from Tom ‘Diabetes Dad’ Karlya from a few years ago does a great job of explaining that in ways less sweary than my own). It’s about putting diabetes on the agenda for those of us who don’t already think about it morning, noon and night because it’s mailing address is our body.

So, for that reason, local newspapers, news bulletins, online new outlets and everywhere else that is trying to fill a 24-hour news cycle with content will want to talk about diabetes. If previous years are anything to go by, what we see will not necessarily be all that great. But that doesn’t need to be the case.

Last week, I was involved in a news segment about diabetes. When I watched in back on the news that night, I was so impressed with the way the story was presented. I’d managed to chat with the reporter as she was putting together the copy for the newsreader to use when introducing the story, and what she would say. There was no use of words such as ‘sufferer,’ ‘diabetic’ or ‘disease’. Instead, it was a balanced story that presented the facts. It was no less a piece because it left out sensationalist language.

I know that news outlets like a melodramatic take on things, but if you are in a position to help frame the way that diabetes is presented in the media, do it! It’s easy to do (the Diabetes Australia Language Position Statement helps) and mentioning that it takes no more time to use engaging and empowering language rather than stigmatising and negative language may help too.

I’m all about hope at the moment – well always – so here is what I hope for this World Diabetes Day:

In the posts celebrating the theme of this year’s WDD, diabetes and families, I hope that nowhere is a person with diabetes made to feel guilty, or that their diabetes is a burden on their family. I know that diabetes affects my family. I know that diabetes has moments of keeping them awake. I know there are times they may worry. But thankfully, I have never, ever heard them tell me, others, news outlets, social media, one of our dogs that they don’t sleep because of my diabetes, or they spend every minute thinking about how diabetes impacts on us, or that my health condition eats into our savings. Think about what you are saying and how we may feel if you talk about us like that.

In news reports, I hope for accurate reporting that doesn’t make us look pathetic or as though we deserve pity. I hope for language that presents the facts about diabetes without adding judgement or blaming us for our condition.

I hope that whoever is thinking, writing, speaking, presenting about diabetes this week remembers that no one asks to get diabetes; no one asks to get diabetes-related complications. Blaming and shaming us does nothing for anyone.

I hope for balance, and that for every story that celebrates an Everest climbing (or similar) we acknowledge the less grand endeavours. Because when speaking about diabetes, we cannot only hear from those at the extremes of the spectrum. Most of us are somewhere in the middle and our stories shouldn’t be left out.

In online groups I hope for no discussions about why we need to change the name of type 1 diabetes to distance ourselves from people with type 2 diabetes. Because: 1. Shut up and 2. Stop it; you’re adding to the stigma.

And more about online groups. If people are sharing news stories that will inevitably show overweight people eating hamburgers, the correct response is not to shame these people and tell them they are pathetic for not eating low carb. Because: 1. Shut up and 2. No one cares about how many grams of fat or how few grams of carbs you ate today, or how much insulin you didn’t need because you ate a bowl of organic kale with some organic tuna with coconut oil for lunch.

I hope that diabetes is presented as a serious health condition that does not discriminate when selecting whose body it wants to hang out with (in?). And that all different body types are represented.

And while we are talking about representation, I hope that we see diversity in diabetes stories from people of different colour, race, religion and sexual orientation. Because factors affecting our diabetes go beyond just the medications we take, and not everyone living with diabetes looks or is the same.

I hope that the voices of people with diabetes are not drowned out by those around us.

I hope to see myths busted.

I hope that somewhere we see that diabetes affects the whole person – body, mind and spirit – and that any solution claiming to help us, addresses each and every one of those parts of us.

I hope to see those who are happy to #MakeDiabetesVisible take whatever platform works for them and shares, shares, shares; and equally those who want to be more quiet ,are given the space to do that too. (Read this beautiful piece from Melinda Seed for more.)

And most of all?

Most of all I hope that no person with diabetes sees anything this World Diabetes Day that makes them feel diminished in any way for having diabetes. Because if that happens, then surely the day cannot be measured a success.

Trending on Twitter at the moment is a hashtag that is getting a lot of attention (obviously: it’s trending).

The hashtag is #DoctorsAreDickheads.

Has it got people’s attention? Yep.

Is it inflammatory? You bet.

And it needs to be.

The shitty thing is that sometimes it takes a loud, brash moment like this for people to sit up and listen. Lousy experiences in healthcare are not isolated experiences. Not being listened to; not being believed; being dismissed; being belittled; experiencing doctor bias – these are all real. These happen frequently.

In diabetes, we hear this from the point of (mis)diagnosis right through to people who have lived with diabetes for decades. How many people were sent away from the doctor being told their symptoms where nothing? How many parents were told they were over-reacting when they repeatedly took their thirsty, constantly peeing, losing weight child to the GP? How many of us are blamed instead of helped when we start to develop complications?  Almost every single person with diabetes I have spoken has a terrible tale to share.

Hashtags like this, which often then become ‘movements’, come about for one simple reason: people are hurting and need to be heard. They don’t happen because an individual has a grudge directed at one other person. They happen, and become magnified, because there is clearly a systematic issue somewhere. One single person may start the discussion, but others see their own experiences reflected in what others are saying and join in the discussion.

Also, hashtags like this don’t happen as a first line of attack. Often, people have tried every other angle: they have tried to reason, asked to be heard, searched for someone they hope will be more sympathetic, used the system in place – the system that is meant to protect them, followed protocols for making complaints when things go wrong, written quiet pieces on their own blogs or in closed community groups in a hope that someone – anyone – will listen. They have tried being polite, quiet, compliant.

Yet they don’t feel heard.

Unsurprisingly, there have been parallels drawn between #DoctorsAreDickheads and #MeToo and #BlackLivesMatter. And in exactly as the response to #MeToo became #NotAllMen, and #BlackLivesMatter became #AllLivesMatter, predictably we are seeing #NotAllDoctors.

Suddenly the reason behind the discussion is hijacked. Doctors become defensive; others jump to their defence. And the stories of those who have been hurt, who continue to be hurt, who have sometimes had their lives turned on their head, start to get lost.

The right response to this hashtag is to listen. It is not to turn it around and defend yourself or start to attack those who are sharing their personal stories. It is not to be self-justifying. It is not protect your own interests. It is not to accuse the people sharing their stories as being aggressive, nasty, offensive, attention-seeking or confrontational.

It is to stay silent and listen. It’s to let the discomfort wash over you, surround you, move in and almost suffocate you while you remain quiet and listen.

Listen to the people who have had these horrible experiences. Recognise there is a power imbalance between medical care givers and receivers. Understand how vulnerable some people are when they are sharing their stories – and how vulnerable they were when they were let down by their doctors. And accept that the anger on show is completely and utterly understandable.

Personally, I have had some horrid experiences with doctors. Of course I’ve had some incredibly positive and empowering experiences. I have nothing but the highest regard for my own healthcare team and so many of the HCPs I am lucky to work with as part of my job. I named my kid after my endo because I honestly think that her care and expertise and compassion are part of the reason that I have an amazing teenager accompanying me in my life these days. But this isn’t about celebrating those moments.

It’s about the ones that left me feeling hopeless.

Some I’ve documented on my blog, others I feel I am still too traumatised to talk about. I have felt belittled, delegitimised, stigmatised and made to feel like a fool, a hypochondriac, a trouble maker, an attention seeker by doctors in the past. And I am a confident, educated, Bolshy advocate who understands the system. Imagine for a moment those who don’t, because we’re not hearing from them. Yet.

For every single person using the #DoctorsAreDickheads hashtag on twitter as they share their experience, there are dozens who are not doing that. It is not a loud minority who are being rabble-rousers. What we have seen in the last day or so is just the start.

Could it have been more nuanced? Maybe. Someone suggested that a better option would have been #DoctorsBeBetter, but I guarantee that those who are up in arms about this hashtag would still be crying #NotAllDoctors even if there wasn’t the profanity contained within the current hashtag.

And finally, I have a plea here. Please, do not invoke the #LanguageMatters movement as part of this discussion. Language matters – at least the way that I see it and have been working at for almost a decade now – is about ensuring that the language used when speaking to and about people with diabetes empowers and supports us.

If we want to add a language focus to this discussion it’s this: stop policing the language that ‘patients’ use. In the same way it’s not up to healthcare professionals to tell people with diabetes the language to use when speaking about our own diabetes, it is not for the medical community to tell the ‘patient’ community to tone it down or use different words when we are telling our own stories. We will use the words that resonate with us, within us, amongst us. Because these are our stories. And it’s time, and we deserve, for them – for us – to be heard.

I’m heading to Sydney this morning (it’s early…too early) for the Australasian Diabetes Advancements and Technologies Summit – ADATS, (follow along at #ADATS2018), which had me thinking about the conference last year where I spoke about Loop, scared a shitload of HCPs, was almost traumatised into never speaking again in public (almost – didn’t happen) and was happy to be branded non-compliant.

Today will be a far gentler experience – my role is as a member of the organising committee, and as a session chair. Surely no one will want to sue me for that. Right?

As I ponder that, and reminisce about last year’s talk, here are some links. So many links that I have been wanting to share. So, have a cuppa, have a read, and share stuff.

Also, being deliberately non-compliant is kind of fun…

(Disclosure first: My flights from Melbourne to Sydney are being covered by the National Association of Diabetes Centres (NADC), the organisers of ADATS. I am on the organising committee for the conference.)

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Finally DIYAPS makes it to the mainstream media in Aus

I’d heard of The Saturday Paper, (which was a surprise to the journalist who interviewed me), but apparently not all that many people have. It’s a weekly newspaper (somewhat unimaginatively named – it’s a paper and comes out each Saturday) with long-form articles. One of those articles was about DIYAPS and came about after journalist Michele Tyde heard about the Diabetes Australia DIYAPS Position Statement.

Read the article here.

Read the DIYAPS Position Statement here.

The body part is connected to the PWD

‘Talking about the “diabetic foot,” the “diabetic kidney,” or the “diabetic eye” suggests they are somehow separate from the person whose body actually hosts the diabetes. This language suggests the diabetes-complicated body part is more like a malfunctioning car part that needs service – if only we could be provided with a courtesy foot, eye, or kidney to use until our own is better!’

The language at ADA this year (all the way back in June…all the way over in Orlando) didn’t really set off too many alarm bells. Until we had a good look at the program. I wrote this piece with The Grumpy Pumper for diaTribe about how it seems that #LanguageMatters a whole load less when talking about diabetes-related complications…and that needs to change.

Conference blogs

It’s great to see the Ascensia Diabetes Care team continue to support diabetes bloggers by inviting them to write up their thoughts on diabetes conferences. The latest contribution is from Sascha Stiefeling (who blogs at Sugar Tweaks) where he gives some insights into the start of EASD. (It was written in German and translated into English.)

Oh – and here’s the post I wrote for them about the Australasian Diabetes Congress a couple of months ago. (I was not paid to write this, or supported by Ascensia to attend, but I did work with them on their Social Media Summit.) 

No weakness at all

On Mental Health Awareness Day this year, UK writer and poet David Gilbert wrote this beautiful post about the strength – not weakness – of living with mental illness.

How we are wrong about obesity

This piece about obesity is a must read. It talks about how weight bias from healthcare professionals and stigma often results in higher weight people avoiding going to the doctor because they fear discrimination, not being believed and being shamed.

More on weight stigma

And read this piece (also on diaTribe) about how weight stigma hurts people and affects health outcomes.

Keep Sight

This week, Diabetes Australia officially launched the first ever national eye screening program, Keep Sight. The program will make it easier for Aussies with diabetes to get their eyes checked. You can read about the program here (from when it was announced back in July).

Disclosure: I work at Diabetes Australia, but was not asked to write about this program. I’m doing so because it is important.

Your story is important

True champion of listening to ‘the patient’, Marie Ennis-O’Connor wrote this wonderful piece about the power of storytelling in healthcare.

Always be kind

I’m always fascinated to read stories from HCPs who write about their experiences on the other side of healthcare. Moving from care-giver to the one needing care can be life-changing. In this BMJ Opinion piece, health researcher Maria Kristiansen writes about how important compassion and kindness from healthcare professionals were for her and her family during her young son’s illness and death.

More on kindness (because we can never have enough)

The first sentence of this article in BMJ by Dr John Launer had me hooked: ‘I’m not a clever doctor, but I’m a kind one’. Have a read.

Diabetes in hospital

I know I’m not the only one to be terrified of needing to go into hospital, worrying about a lack of knowledge about type 1 diabetes treatment and my technology, and having to fight to maintain ownership of my own diabetes care. Adam Brown at diaTribe has written about his recent trip to A&E, surgery and subsequent recovery after his appendix ruptured. Lots of great tips for anyone who may wind up in hospital.

Digital diabetes

How can digital medicine and research, and artificial intelligence transform diabetes? That’s the question research scientist in diabetes, Dr Guy Fagherazzi, asks in his (open source) review in Science Direct that you can read here.

Bake these!

And finally…It’s nearly the weekend and if you have a spare 20 minutes, you really, really should think about baking these! They are crackled parcels of molasses, spice and all things nice and are, quite possibly, one of the best things I’ve ever baked.

The first day of ADC was a hectic one for me. After the busy and generally well-received DIYAPS session, I had a break for lunch and then headed back to the same room as earlier in the day to co-chair a session on co-design.

I quite loved that the idea of this session was included in the program. And even more in love with watching the room fill up as Congress attendees filed in and took their seats. The session was the brainchild of Dr Kirstie Bell, who among other things, is a huge advocate for involving PWD in the program at ADC. She absolutely slayed it with this one!

The planning for the session involved a number of people, including PWD, HCPs and researchers and the aim was to highlight examples of co-design in diabetes and healthcare to help attendees understand that this wasn’t something to be afraid of. I think that sometimes there is an idea that it is just too hard to include everyone because it will mean a lot of coordination and fingers in the pie. But we wanted to show that could be managed effectively.

Another objective was to try to explain the principles of co-design. In this case, it was to underline (and probably italicise and bold) that co-design does not mean showing a finished product to someone and asking for ‘feedback’, with a further point being made that asking for feedback shouldn’t be the aim as that is done when things are already completed. Instead ask for ‘feed in’ the whole way along the process.

If the idea of co-design had a slogan, surely it would be #NothingAboutUsWithoutUs, meaning that the ‘us’ in that phrase need to be the ones driving initiatives – and definitely not being left out. Unfortunately it does seem that in diabetes, often the ‘us’ (i.e. people actually affected by diabetes) are not included in design, instead having others make decisions about what they thinkwe need and want.

And that’s why I made a really important point – something that I frequently speak about. And that’s the reminder that when it comes to the idea of co-design, if there is no opportunity for all stakeholders engaged to influence – ESPECIALLY in the case of diabetes, PWD – then it is not true co-design.

Too often, we see examples of services, activities and programs that don’t provide PWD that opportunity to influence. When that is the case, what we have is pure tokenism. And in my mind, tokenism is even worse than not consulting at all, because it gives the illusion of co-design without the reality of it. Too frequently I hear of organisations and services saying ‘Oh – we have these policies in place’ when truthfully, they are worth little more than the paper on which they are written because PWD do not actually have real power to effect any influence.

In my experience working in diabetes organisations, one of the things that I have come to understand as being critical is support from leadership. The role I started in 17 years ago at Diabetes Victoria could have been considered tokenism (one person ‘doing type 1 diabetes’) three days per week, without any budget only grew because then-CEO, Greg Johnson, had an attitude of ‘if we’re talking about diabetes programs services and activities there better be people with diabetes in the room talking about it with us.’ For a while, the director I reported to, Dr Ralph Audhem, a GP from Melbourne, was committed to establishing a national type 1 diabetes program that was fully staffed by people affected by people affected by diabetes.

Both were willing to grow the program through resourcing (both staff and funding), but most importantly, by listening to people with diabetes – and not just those from within the organisation – and including them in every single step of the way.

Perhaps, my most favourite example of co-design recently is the Mytonomy diabetes language matters video. Deb Greenwood in overseeing the development of the video consulted with all stakeholders, firstly to help write the script that would be used. It was honed and finetuned by repeatedly asking people to feed into what others were saying. Instead of using actors to deliver the message, Deb engaged PWD, healthcare professionals and researchers. The result is something that not only hits the mark when it comes to its messaging, but it feels wonderfully authentic and real. No wonder people have been sharing it far and wide.

I was thrilled to be able to show it as part of the introduction to the co-design symposium at ADC, and then Jane Speight shared it again the following day during her ADEA Plenary talk. (I would really encourage ANYONE involved in putting together a diabetes conference or event to find a way to fit this three minute video into the agenda! It resonates with all involved in diabetes.)

The other speakers in the symposium all shared their own examples of where the principles of co-design had been applied with great success. Melinda Seed spoke about the Type 1 Network and how that grew from a gap of providing support and information for young adults with diabetes; Frank Sita shared his experiences of being on the Perth Diabetes Care Young Adults with Diabetes Committee and Melinda Morrison provided an overview of stakeholder involvement and engagement in the NDSS Diabetes and Pregnancy priority area.

These real-life examples provided attendees with an understanding of how they too could incorporate the idea and principles of co-design in their own work – which is exactly what we hoped to achieve when designing (co-designing!!!) the session. And it seems that just maybe, we got through to some people. I’ll finish this post with this tweet from credentialled diabetes educator and midwife, Belinda Moore:

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