Diabetogenic

#MyDiabetesFamily

November 8, 2018 in Awareness, Diabetes, DOC, Family, Peer support, Real life, Social media, World Diabetes Day | 1 comment

This year for World Diabetes Day, the International Diabetes Federation has decided on the theme ‘Diabetes Concerns Every Family’. According to the WDD website, the aim of the campaign is ‘…is to raise awareness of the impact that diabetes has on the family and to promote the role of the family in the management, care, prevention and education of the condition.’

I get that. I have said it on numerous occasions: it takes a village to live with diabetes.

I was a little nervous when I first saw some of the materials from the campaign, because I was worried that it may focus too much on the negative effects of diabetes and how it burdens the families of those living with diabetes. I know how diabetes impacts my family and I feel enormous responsibility already about that. I don’t need to be reminded of it, and I certainly don’t need to be guilted into being told that if I am not managing my diabetes properly I am doing a disservice to my family.

Although there have been a few little things that hint at those ideas, mostly, what I’ve seen has been positive and focused on celebrating and acknowledging those villagers who help us live with diabetes.

Diabetes Australia has decided on the campaign of #MyDiabetesFamily to highlight the idea of the village, and acknowledge that ‘family’ looks different to a lot of people. For some people with diabetes, it will be their immediate family – parents, partners, kids etc – who are their main cheer-squad and supporters; for others it will be their friends, work colleagues or maybe gym partner. Someone the other day told me that their dog is their most important diabetes supporter, providing them with comfort – and alerting them to lows.

I was asked to put together a collage of the people who I would refer to as #MyDiabetesFamily. This is it:

#MyDiabetesFamily

Obviously, and most importantly, Aaron and the kidlet feature. They know my diabetes in a way that no one else does because they see it most. They see the difficult days, the frustrations and how overwhelmed I can get, but they also see my celebrate the positives. And they have seen how much my diabetes – and my attitude to it – has changed in the last 12 months. In some ways, they benefit from Loop, too because my diabetes intrudes a lot less into our family’s life.

My parents and my sister are on there too – another obvious inclusion. Their support is never ending.

My gratitude for my family – in the more traditional sense of the word – is unending. They may not have diabetes, but they deal with it in different ways. While they may not understand that feeling of unquenchable thirst that comes from high glucose levels, or the panic of an ‘eat the kitchen’ low, they do know what it is like to be spectator to it all and I know that they all wish that I didn’t have to deal with those things – and everything else diabetes has to offer.

And the photo at the top shows just some of my friends with diabetes. As it turns out, this was the first photo on my phone with a group of diabetes friends, and these fab people are just a tiny number who also make up #MyDiabetesFamily; I am lucky to say that there are so, so many more.

These are the people whose islet cells are as absent as my own; these are the people who ‘get it’; these are the people who intrinsically understand what diabetes feels like – even if each of us have different experiences, and we use different words to explain it, and come from and with different perspectives. These are the ‘us’ in #NothingAboutUsWithoutUs; they are the ‘tribe’ in ‘Find your tribe, and love them hard’.

And in the middle? Well, that would be me. Because I am the one who is so grateful to have them all there as part of my life, helping and supporting me.

Want to get involved and celebrate your own diabetes family?

Have a look at the Diabetes Australia Facebook page (click on the image below to be taken there) to find out how.

DISCLOSURE (because they matter and I always disclose. ALWAYS.)

I work at Diabetes Australia, and had some involvement in the development of this campaign. I am writing about the campaign because I think it is a truly important one – not because I was asked to by any Diabetes Australia staff. Plus – I’ll take any opportunity to highlight the folks who make living with diabetes easier!

Research Wednesday

November 7, 2018 in Advocacy, Diabetes, Research | 1 comment

Research Wednesday is not a thing. Until now. And probably just for today. But there are a few things across my desk that need input from people with diabetes and diabetes healthcare professionals.

Today seemed like as good a day as any to share.

If you can, please do consider participating in any of these online surveys that are currently open. And also, share any of the surveys with others who you think can provide their experiences too.

One for the women with diabetes

A few months ago, I wrote a piece about the need to really speak about women’s sexual health and diabetes. It was a follow up post to something I wrote on the same topic a couple of years earlier.

These remain two of the most read posts on Diabetogenic. Both of them resulted in a lot of messages from a lot of women – most of whom I didn’t know – saying that for years they had searched for information about how diabetes can impact on their sexual health…and had found very little. They also said it was rarely, if ever, a topic their HCPs discussed or asked about. Conversations followed on online platforms too. Clearly – oh, so clearly – women with diabetes were searching not only for information about these issue, but to connect with other women would had similar experiences. The number of times I read the words ‘I thought I was the only one’ was somewhat heartbreaking.

(Side bar…and true story: after that piece was posted, this happened on a Sunday evening at the local Woolies:

Click for original tweet…and replies

Good to know that someone thought it was a good idea. Even if it meant that I shopped at a different store for a few weeks after that.)

That post coincided with some research Kath Barnard was conducting which has shown that sexual health issues affect three quarters of women with diabetes. The way that women are affected can be different – it may be physical, or emotional, or a combination of both.

Now, there is a follow up survey which is hoping to gather more details of exactly how diabetes impacts on sex in women with diabetes.

One for the men with diabetes

Because diabetes is an equal opportunity employer, there is also currently a survey for men with diabetes which is also looking at sexual health and relationships. While there may be quite a bit of information available about erectile dysfunction, sexual health in men is more than that.

Just as I’ve had conversations with women with diabetes about sex and diabetes, late night conference dinners and drinks often lead to a little more candid discussion about some of the issues around sex that men with diabetes experience too. And it seems that just as women are searching for more information, so are men.

Kath Barnard has stepped up again with a survey for men. This is a last call for this one as it is closing soon.

One for the new mums with diabetes

If you are a woman with type 1, type 2 or gestational diabetes who is pregnant, or has been pregnant in the last year, please consider completing this survey from the NHMRC Clinical Trials Centre at Sydney Medical School (from the University of Sydney).

The aim of this research is to better understand glucose monitoring experiences and preferences of pregnant women with diabetes.

The survey has been open for a few weeks now, and participation rates are not great, so if you are able to spare 20 minutes to provide your input, please do. And also share with relevant networks.

One for the HCPs

This survey is JUST sneaking in as it closes today!

The Diabetes and Schools consultation is continuing, and now, paediatric and adolescent healthcare professionals, and HCPs involved in diabetes education and training of school staff are being asked to complete a short survey.

This will form part of the overall consultation and will help to shape the new, nationally consistent training program being developed by Diabetes Australia, ADEA, ADS, JDRF (Aus) and APEG.

There really is no time to spare on this one. You only have until tonight.

True partnerships

November 6, 2018 in Conferences, Engagement, Health | 2 comments

It’s Melbourne Cup Day today and I’m bound for Brisbane for the HIMSS Asia Pacific conference. I’m speaking in the consumer partnership track, which allows me to get on one of my high horses (Cup reference #1) to speak about the importance of including health ‘consumers’ in…well, in everything.

Right out of the gates (Cup reference #2) I will be speaking about how a health conference that doesn’t allow for people living with that health condition to attend is already not partnering properly.

I want to look at the word ‘partnership’, which I actually think is a bit of a misnomer most of the time in healthcare. There remains such an imbalance of power and representation in most cases of the development and delivery of services, activities and resources, yet partnership suggests that everyone is equal. I can’t count the number of times I have been ‘the’ consumer representative in a roomful of healthcare professionals, researchers, administrators, industry reps and policy makers. They will all be there in droves, and there I am a lone voice.

If I’m being honest, I think that the idea of partnership needs to be questioned, because that suggests that everyone’s voice should be equal. Perhaps it’s a little radical to think this way, but quite frankly, I don’t think everyone’s voice should be equal. I think the most amplified voices – yes voices – should be those of the end user – the consumer.

My talk is also going to highlight tokenism in consumer partnerships and engagement. The idea that ‘any consumer will do’ is rife. How do I know that?

Well, I get contacted every week asking me to be a consumer rep on something or other. Most times I say no and recommend someone better suited. Such as the time (just a few weeks ago) I was invited to sit on a committee looking at programs to support men with type 2 diabetes diagnosed in their 50s, living with erectile dysfunction? When I pointed out that finding a few men with type 2 diabetes diagnosed in their 50s would actually make sense, I was told that I would do a fine job representing them. Yeah – no I wouldn’t. Because I know nothing about being a man, being in my 50s, having type 2 diabetes, or erectile dysfunction. How’s that for a quadrella? (Cup reference #3)

But the one issue I want to focus on – because I think it actually is a super easy concept to grasp – is the issue of influence, or rather the consumer’s ‘power to influence’. This is a biggie because for me, it is the cornerstone of engagement, and it is actually quite easy to measure. We can have whatever framework in place – the policies, the procedures, the advisory boards and the teams dedicated to putting the consumer first – but if those consumers do not have the power to influence what is going on, they are being excluded from having any real power and we then we need to question if there is true partnership.

I keep coming back to this – I spoke about it at the co-design session at the Australasian Diabetes Congress this year. I have also written about it a lot here. And I talk about it a lot when I am speaking with organisations and industry about whether their so called engagement program is truly going to matter.

I’m not trying to oversimplify this – I understand there are a lot of factors to consider, and sometimes there is legislation and governance to work through. But governance can be restructured. As can legislation.

But maybe I am. Maybe I am trying to make it easy because too often there is fear and uncertainty about how to engage, and this leads to either things being done poorly. Or not at all. And to be honest, I’m not sure which one is worse.

Sleep aware

November 5, 2018 in Awareness, Diabetes, Real life | 3 comments

I’ve been a little out of sorts for the last week or so and this has translated to me feeling a bit distracted, and not sleeping well. I’d forgotten about not getting a good night’s sleep, because Loop completely and utterly changed the way I sleep. Here’s the thing, though: when I am not sleeping well, my glucose levels are far less predictable. And then, when my glucose levels are far less predictable, I sleep less. And so, I enter a cat and mouse chase as I step in and try to sort things out when really, I should stop. And try to sleep more.

I’ve thought about this as I skim through posts about raising awareness of diabetes. Because I realised that in the eagerness of doing the very important work of trying to #MakeDiabetesVisible to everyone else, and raise awareness of what living with diabetes is truly like, I am still becoming aware of things myself. It flies in the face of my belief that this month isn’t about those of us who have diabetes – it’s for the people who don’t, so that we can hopefully improve their understanding of the seriousness of diabetes.

But actually, in the last few days, as I’ve been a little more introspective – and awake more –I’ve become aware of the impact of sleep. Or rather, the impact of the lack of sleep.

I talk a lot about how all-encompassing diabetes is: about the burden of diabetes. This is different for everyone, and in the past I have spent a lot of time (some might suggest navel grazing) trying to define the things that contribute most to that burden for me.

Since I started Looping, I regularly say that I feel less burdened than I ever have.

That is true. And when I think about it makes perfect sense. The automation of Loop means doing fewer diabetes tasks, and that means less burden on the physical things I have to do. It has also resulted in significantly reducing swings in glucose levels. These things alone save me a lot of mental energy. And physical energy too. And keeps my mood far more even.

But this last week; a week that I have felt a lot more needed from me emotionally, diabetes has struggled too. Loop is brilliant at chugging away in the background and keeping everything as stable as possible. Night-times are brilliant because there are far fewer of the contributing factors that send our glucose levels into disarray.

However I have spent more time awake, meaning less time for just chugging and more time for needing to fix things. The less I sleep, the more Loop has to do. And sometimes, it doesn’t cope all that well – especially if I step in to try to give it a ‘helping hand’.

Sleep is so important. We talk about food and exercise and medication and how they impact on our glucose levels. We talk more about the result of stress on our diabetes management. We know that when we get right the equations about those factors and our glucose levels are less variable, we feel better. But sleep? I honestly don’t think that anyone has ever spoken with me about sleep.

Sleeping more is a regular issue for me. I get a second wind late at night and suddenly decide that is the time I should really do some work. Plus, having friends around the globe means needing to negotiate time zones. When they are awake, I often should not be, yet marathon message sessions often happen and that delays sleep too. It works both ways. I’m conscious that good times for me to chat are not necessarily ideal for those in a different hemisphere! Oh – and then there is jet lag. Ugh…jet lag.

Adam Brown has devoted a whole chapter of his book ‘Bright Spots and Landmines’ to the issue of sleep and diabetes. I think I need to have a reread. But more broadly, I think we need to better address the issue of sleep for those of us living with diabetes, because once our quantity and quality of sleep starts to affect our glucose levels, the way we feel overall significantly changes.

I’m feeling much more like my usual self today. I slept a little better last night and my CGM trace has been far nicer; Loop has been able to cope much better, and my time in range has returned to what I have become used to. All in all, it adds up to me feeling like I usually do.

Unfortunately, even with the improved night’s sleep and more time in range, I still wasn’t thinking clearly enough when I chose this colour for my nails. I’ve no idea what to blame for that ill-advised choice, but probably should have learnt by now that awareness raising for diabetes does not need to extend to blue nail varnish. Alas, I have not …

Connections

November 2, 2018 in Diabetes, Peer support | 4 comments

Last weekend, we were in Carlton, waiting to order some lunch in a casual café. We stood there deciding what we wanted, waiting for our turn. We reached the counter and were about to order when the woman behind the counter said something. It took me a moment to realise she was speaking directly to me. ‘Sorry?’I smiled at her, asking her to repeat herself. ‘Your Dexcom,’ she said. ‘How do you find it?’ My smile got wider. ‘Oh, I love it! Wouldn’t be without it.’ I said. ‘Do you use one?’

She rolled up the sleeve on her tee-shirt, turning her body slightly. ‘No, I use Libre,’ she said, pointing to the sensor on her upper arm. ‘But I’ve been wondering about the Dexcom.’

She was young, and was diagnosed about four years ago. ‘It’s hard,’ she said to me, and then asked how long I’ve had type 1. ‘Twenty years,’ I watched her eyes widen. ‘And yes…I know. It can be hard.’

She told me she thought it was really tough being diagnosed as a young adult. ‘I remember not having to think about diabetes. It makes it hard that I have to think differently about things now because of diabetes. Like when I want to go out drinking. I think it would be easier being diagnosed younger so it’s all you know.’

‘I’m not sure there is ever a good age to be diagnosed with diabetes. I think each age would probably have its challenges. I’ve always felt that I maybe was a little lucky missing the teenage years and all that comes with it. But it certainly wasn’t easy being diagnosed at twenty four… it sucks all ‘round!’

Back in September, in a little street in Rome as we waited to order gelato, I had another ‘diabetes in the wild’ moment. The gorgeous Roman sun meant almost everyone was walking around in tank tops and strappy sundresses. ‘Look,’ said the kidlet, her eyes on the arm of the woman in front of me…and the unmistakable disc of her Libre sensor.

You can guess what I did next:

After introducing myself, we chatted about our diabetes tech. We spoke about funding and how we need the technology to live well, and how much easier it makes travel and negotiating time zones. Oh, and then we talked about the wonderful times we were having in Rome and the delicious food. It’s never all about diabetes!

After last weekend’s encounter, I realised that despite knowing a lot of people with diabetes, I still feel the need to reach out when I see another. And these days, I seem to always ask a version of the same question: ‘Do you know many people with diabetes?’ I guess I’m taking the temperature to see just what their support network looks like when it comes to other people in the know and how linked in they are with other PWDs.

We look to connect with the people whose stories mimic ours because that’s how we make sense of our own diabetes, or the diabetes of someone in our family. The other day when I visited with a family support group, the connection shared between the parents of children and teens with diabetes was clearly on show. One parent told me that until she started spending time with other parents of kids with diabetes she felt so isolated. ‘They’re the only ones who get it,’ she said me and I nodded furiously. Because while I don’t ‘get’ her situation, I certainly do understand what it means to find that connection with others who do.

For me, I do peer support in a very casual way. It is informal. How I have come to know those in my tribe has usually been completely serendipitous and the way we remain connected is too. It’s the occasional phone or Facebook messages, sharing something we’ve seen or checking in after we notice something on their social feeds. It’s the ‘Can we Skype now?’ from a friend in a different time zone looking to find a few minutes to catch up (or, even better, catching up with those in different time zones IRL thanks to my crazy travel schedule!). Or it’s the quickly organised ‘Let’s catch up for a coffee somewhere local’ from those not only in the same time zone, but also the same postcode!

We talk about the value of peer support, and there is increasing evidence to show just how valuable it is.

So for November and Diabetes Awareness Month, one of the things I think we need more awareness of is the value of those connections. ‘Prescribing’ peer support always seems an odd way of thinking about it, but perhaps there is some merit in ensuring that part of HCP training includes introducing the merit of peer support, and providing information about how they can point people with diabetes to others.

My tribe of other people living with diabetes hold me up, hold me together and hold me close. I wish that for everyone.

Access+Respect+Choice+Health

November 1, 2018 in Advocacy, Awareness, Diabetes | 3 comments

Everything is turning blue. In the US, today marks the start of Diabetes Awareness Month. Apparently, Diabetes New Zealand are also using November as an awareness opportunity, this year focusing on encouraging Kiwis to ‘Act now to live well with diabetes’. (You can read about their activities here.)

While it’s not Diabetes Awareness Month in Australia, those of us in the Aussie diabetes world cannot escape that there is a lot of diabetes happening. We can choose to get on board or ignore it. Except, of course, on World Diabetes Day where we ring everything in blue circles.

Some years I’m totally gung-ho and all enthusiastic and happy to do the whole month. Other years I’m a little more subdued. This year, I think I’ll have a foot in both camps, which was apparent with my swinging mood this morning. I woke up and my attitude was firmly here:

But, after my shower as I searched for something to wear, almost automatically, I went straight for clothes that were blue. Blue. All blue! Every single thing: blue! (Including my eyeliner.)

Diabetes awareness means different things to different people. I firmly subscribe to the My Diabetes, My Rules philosophy, and that also encompasses the issues that we hold near and dear, and fight for with all the energy we can summon. And those issues will be different for different people.

For me, I’ll keep on keeping on throughout November, working on the issues that matter to me. That includes neat little hashtags like #LanguageMatters and #NothingAboutUsWithoutUs. It also includes acknowledging that diabetes is a self-managed condition that we do ourselves more than 99 per cent of the time. I challenge ideas around consent and autonomy. I fight for us to be able to do diabetes in the way that we want – with the right support system around us, using what we need to be our best. I talk a lot about how diabetes is more than numbers and that screening and consideration of our mental health is just as important as screening and consideration of diabetes-related complications. And while we’re on complications, I have spent a great deal of time this year writing about how blaming and shaming people with diabetes and diabetes-related complications is damaging. I beg, beg, beg that Steel Magnolias not be held up as current case study for diabetes and pregnancy. Perhaps most loudly, I cheer the cause of PWD being represented, present, including, involved and highlighted when diabetes is on the agenda…any agenda! Life for a Child remains a cause very close to my heart and something I am privileged to be able to support. And I promote the value and need for peer support, clearly explaining how it is my friends living with diabetes – my tribe – who I count on most because they unquestionably ‘get it’ and that what we learn from our diabetes peers is absolutely critical.

The list is long and at first, it may look like I need to just settle on one or two things and do those properly rather than the half-baked mess it may appear.

But actually, when it all boils down, I think that the truth is that all those issues can be condensed into four main categories: Access, Respect, Choice, Health.

That’s what November is going to be about for me. I’ll keep banging a drum to what may now be a familiar tune. But there is lots more to do. And this month, I’ll be doing it in blue.

Diabetes Scrabble

October 31, 2018 in Diabetes, Real life | Leave a comment

The kid and I have been enjoying some fierce Scrabble battles. At this stage, I am absolutely owning it, and, as a mother who has always subscribed to the tough love approach to parenting, I’m not going easy on her in any way. Plus, I like winning.

I’ve always loved Scrabble. I love the empty board at the beginning and the possibilities of what is about to be laid down. I love turning over the first seven letters and arranging them on the wooden stand, wondering if there is any chance of finding a word that will use them all up as my first turn. I look ahead and try to strategise so that I manage to get the most double and triple world scores. And I play to win. Did I mention that already?

As the board fills up, and letters form different words, I hope for an open board with lots of options to use the letters already in play. I move the tiles around on the stand trying out different arrangements, searching for uncommon words that the kid may never have come across, (because why not use this is a teaching moment?!).

When our game finished the other night, I looked at the words and smiled at the randomness of it all. How did those words all come together; how was that pattern the end result? It was an exercise in haphazardness and chance and, sometimes, a bit of luck.

Just like my twenty years of diabetes. There is no rhyme or reason to most of it; nothing really happened by design. There was (and continues to be) a lot of trial and error. I stumbled on things and added to what I was doing to see if it made anything better. Sometimes, I jackpotted on the equivalent of a triple word score with a J in play. Other times, I called it a day, throwing everything back into the box and starting again. There were times that I looked at what was in front of me and somehow cobbled together something that seemed to work.

If I were to make a Scrabble board of words relevant to my life with diabetes now it would use different words today than when I was first diagnosed, or after five years of living with diabetes, or ten, or fifteen.

Twenty years ago, the words would have been about uncertainty, following what I was told and naivety. There would have been words reflecting the management tools I was first given, and they would have been very different five years later, when ‘pump’ would have replaced ‘pens’ or ‘injections’. Some cynicism and sass would have started to make its way in. Another five years later it would have all been different again, my bolshy attitudes much clearer and on show. Fifteen years of living with diabetes would have seen more technology, words showing how my world had been opened up thanks to online diabetes support networks and more travelling. These days, there would be words like ‘Loop’. And ‘tribe’ to acknowledge those friends with diabetes who have come to be an integral part my story.

There would be words that may be denied in regular Scrabble, but the diabetes version would absolutely approve of words and abbreviations such as DIYAPS, diaversary, Kellion, RileyLink and YDMV.

But undoubtedly, throughout it all, there would be some words that would be played all the time in each game. Words such as fear, anxiety, frustration. And hope. Hope would always be on the board, the first word played at every opportunity. Because it’s always been with me. It’s the thread that has been woven through and held together every part of my diabetes, from that first day to today and every single day in between.

Researchers + PWD at #EASD2018

October 29, 2018 in Awareness, Complications, Conferences, Diabetes, DOC, Engagement, Language | Leave a comment

I’m still playing catch up on the goings on at EASD. It was such a busy conference – in general and for me personally – that my head is still lost in a lot of what happened and what I saw. It’s somewhat frustrating for me because diabetes conferences are seen as an opportunity for so many meetings of different groups and projects I’m involved in, and that means I don’t get to anywhere near the number of sessions I would like to. When I can, I make sure I live tweet my way through (that’s how I take notes to do write ups later), but this conference was so busy that there was very limited time for that.

But I still did get to see a lot thanks to the satellite events I was invited to and asked to speak at. Plus, this year at EASD, I was involved in something new that was super exciting.

DZD meets #DEDOC was a novel session combining young researchers and (not necessarily young) people with diabetes to give different perspectives on a variety of current research programs. The event was presented by Deutsches Zentrum für Diabetesforschung.

(My very limited German (i.e. I sang in St Matthew’s Passionat University – badly – and was in the orchestra for a German-language version of Threepenny Opera, or rather, Die Dreigroschenoper) is apparently good enough to translate that as the Diabetes Centre for Diabetes Research – so, I guess I’m almost bi-lingual now.)

Bastian Hauck hosted the event and was involved in the project to nominate PWD to speak at the event, and encourage other PWD who were at EASD to come along and listen. This was Bastian doing what he does best – facilitate discussion and encourage engagement by different stakeholders. He always manages to ask questions that get people thinking in different ways and did a stellar job again in this event.

The session was not designed as an excuse for PWD to be critical of the research and researchers, or to find fault in what they were doing. It was not to query the merits of the research either. It was to give the researchers an opportunity to speak about their work (in a rapid fire, five minute pitch), and for PWD to engage in that discussion, asking questions and explaining the relevance of the research to actually living with diabetes. While the project may not have actually come directly from PWD, it was a true collaboration where researchers spoke of what drives them, and we shared what we hope from science.

So, what research was on show?

Firstly, we had Dr Stefan Kabisch speaking about research which compared dietary prevention and treatment of type 2 diabetes with two different interventions: one low carb and one low fat. Cathy van de Mortelewas the PWD involved in this segment of the session, and we couldn’t help but have a little giggle that she had been selected. Those who know Cathy know she is anincredible baker and cook. Her creations are magical and if I lived in Belgium, I would be at her place for dinner three nights a week. But low carb and low fat? Not so much! However, she did give a really useful perspective on the need to remember that different eating plans need to be sustainable and what works for one person may not work for another.

Secondly, Dr Carolin Danielspoke about her research in type 1 diabetes prevention vaccines. Dr Katarina Braune stepped in as the PWD (she is also a researcher and endo) to give her comments on the research. It was interesting hearing Katarina, because she comes from the perspective of a scientist as well as a PWD, so her considerations were different to other PWD who spoke. Her questions and comments incorporated the scientific as much as the ‘real life’, and I loved the way she was able to so succinctly and eloquently translate it all so it made sense to someone like me without a scientific bone in my body!

And finally, Dr Julia Szendrödispoke about diabetes-related complications. While the research was specifically about the mechanisms in the development of complications, as well as looking at potential interventions, I was invited to be the PWD in this discussion to lend my language focus. I highlighted how conversations about diabetes-related complications need to be without judgement and stigma, and that at all times, remember that although a single body part may be in question when speaking about a specific complication, it is attached to a person with a whole body and mind that must also be considered.

To be honest, I felt that my comments were almost redundant because Julia did such a beautiful job in her five minute explanation of her work of ensuring that there was no blaming or shaming. I thanked her for this because the language in pretty much every other discussion of complications I had seen that week was not all that palatable!

I love the idea of including PWD to shape diabetes research. And I loved the discussion at EASD. It was an excellent example of how to include PWD in discussions – even highly scientific discussions. And just how easily it can be done!

This event was the first one, but hopefully the organisers have seen the value of conversation-based sessions including different stakeholders. It would be great for events such as this to attract even more attendees – researchers, HCPs and PWD – although a huge thanks to the German PWD contingent who was there, flying the advocate flag and supporting us – and to see them on the main program of the conference.

DISCLOSURE

I was invited to provide my perspective at the DZD meets #DEDOC presented by Deutsches Zentrum für Diabetesforschung. I did not receive any payment to speak at the session. Thanks to Bastian Hauck from DEDOC (the German Diabetes Online Community) for involving me!

Roche Diabetes Care (Global) covered my (economy) travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #EASD2018 and present at their media event the day before EASD. Roche Diabetes Care also assisted with providing me press registration to attend all areas of the EASD meeting.

The need to be heard

October 26, 2018 in Awareness, Communication, Language, Real life, Social media | 3 comments

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.

Diabetes in schools – you have a chance to say something NOW

October 25, 2018 in Diabetes, Engagement | Leave a comment

I’ve been working in diabetes organisations for over seventeen years now. When I look back over that time, there are some issues that have been consistent ‘hot topics’.

One of those issues is diabetes in schools.

I have been involved in a number of projects addressing diabetes in schools, starting with the beautiful documentary-like video ‘Diabetes Basics’, and the adaptation of the excellent Diabetes UK schools packs for families of children with diabetes and their schools, firstly in Victoria, and then the subsequent national roll out of this resource. It is called Mastering Diabetes and it still is used today.

It is easy to understand why diabetes and schools is such an important issue. Ensuring that children with diabetes feel safe at school, are able to manage their diabetes in the way that works for them, and are able to fully participate in all school activities is critically important. There is obviously – and necessarily – a lot of emotion tied up in the matter.

But what I have come to know is that, by and large, everyone involved – parents, teachers and school staff – want children and teens with diabetes to be safe in schools and participate in all school and extra-curricular activities just as any other student would. There just seems to be a lot of confusion about rights and responsibilities, which is often the case when there are a number of stakeholders involved.

So, it was great when, just last month, the Federal Government announced six million dollars in funding for a new program to make it easier for teachers to support school children with diabetes, and give parents some peace of mind, knowing that their children will be safe at school.

It will be the first time that Australia has a nationally consistent training program delivered to teachers and school staff at every school with students with type 1 diabetes. The program will cover, (amongst other things), safe administration of insulin, hypo management, and reducing diabetes-related stigma.

This is good news. Great news!

The program is still in development stage and a key part of putting it together is making sure that all involved have a chance to provide input. One of the things I have heard repeatedly over the years from parents is that they feel that they are often left out of conversations about how to best support their child at school.

Parents: now is your chance!

There are workshops being held across the country for parents of primary and secondary aged children. There is also an online consultation for parents here.

Teachers and school staff are also part of this development phase and there are separate workshops being held for this group as well. And there is also an online consultation for for teachers and school staff here.

Now is the time to have your say.

Disappointingly, numbers for workshops has been extraordinarily low – some sessions have had to be cancelled due to low numbers. Considering the constant criticisms I have heard in the past about parents being excluded from discussions about diabetes and schools programs, I’m a little flabbergasted that this is the case.

At the risk of sounding slightly bossy and harrying, I am urging parents of school aged children to please get involved and help shape this important program. You need to show up. You need to register and attend the workshops. And you need to complete the online consultation.

All the details are here. Share them amongst your networks. Encourage parents and teachers of kids with diabetes to have their say. Everyone – everyone!– wants kids with diabetes to feel safe and supported in schools. Help make that happen.

The Diabetes in Schools program is being funded by the Federal Government and will be delivered through the National Diabetes Services Scheme (NDSS). The program is supported by the key national diabetes health professional and consumer organisations in Australia: Diabetes Australia, the Australian Diabetes Educators Association, the Australian Diabetes Society , the Australasian Paediatric Endocrine Group and JDRF Australia.

I work for Diabetes Australia. I have not been asked to write about this program, however as I am always banging the drum about consumer consultation, it more than makes sense that I am encouraging – and pleading – relevant stakeholders to take the opportunity to be a part of the program consultation.