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I’m back home after three days on the Gold Coast for part of this year’s Australia Diabetes Society – Australian Diabetes Educators Association conference. More to come next week, when I’ll try to pull together my very messy notes.
For today, here are some pictures!
As I took the stage to chair one of two sessions at the Roche Educators Day in Tuesday, I realised I had already been up for seven hours. It was only 11am. Sentences were difficult until my fourth coffee of the day kicked in!
On the job. Professor Steven Boyages’ talk: A connected ecosystem for healthcare professionals & their patients’ was full of practical tips about using technology to support people with diabetes.
This was the moment I opened the new NDSS Diabetes and Emotional Health Handbook (for health professionals supporting people with diabetes) and I saw Diabetogenic on page 24! Thanks for capturing, Professor Jane Speight!
Proud moment!
Advocates running amok. We actually behaved ourselves quite well. Mostly.
Although, we were mighty busy! Three of the top four influencers at the conference happen to be consumer advocates, sharing information from the conference specifically with the intention of reaching other PWD who could not be in the room.
Martha Funnell used this in her talk on day one. Sums up many, many days!
Rather proud of this special young lass. Here’s Ashley presenting on her work focussing on the needs of young people with type 1 diabetes.
This is a combination of jet lag and exhaustion. (Jet lag belonged to Harriet.)
The NDSS stand looked very bright thanks to these beautiful resources from the Young People with Diabetes Program.
And another proud moment. Kim’s outstanding work on the national roll out of Mastering Diabetes means this resource is in the hands of those who need it most: children with type 1 diabetes, their families and schools. Well done, Kim! (And I’m holding Moving on Up which I am equally proud of!)
Spot the diabetes devices….
Gold Coast.
Proper wrap up coming next week. Enjoy your weekend. I know I certainly will! (But you can play catch up by checking out all the #ADSADEA2016 tweets.)
Last night, I was the ‘here’s one we prepared earlier’ on a panel discussing CGM technology. The audience was all healthcare professionals – mostly DEs, but some dietitians, RNs and also a GP-in-training (so much yay to him for coming along!).
I love being in the room for these events! I wrote about my last experience giving the same talk here. I cannot speak highly enough of the two experts on the panel last night. Dr Peter Goss – who spoke at the last one of these events – is what I would call a disrupter in the diabetes healthcare space and, honestly, all the power to him. He may ruffle some feathers with his sometimes unorthodox approach, but it is undeniable that he is a champion for kids and teens (and young adults) with type 1 diabetes. Also on the panel was A/Professor David O’Neal who is best described as a truly awesome endo (I have heard that from every single person I know who sees him as their endo) and an absolutely brilliant mind. His expertise in diabetes tech is second to none and he is genuinely interested in how the technology can safely, efficiently and effectively be incorporated into the lives of people living with diabetes.
I know that all sounds rather effusive. But I need to point out that they are remarkable. And that they are the sorts of HCPs you want on your side if you are a person with diabetes.
Because now I am going to talk about language and why I pulled them up a little bit after we all did our presentations and sat on the stage ready to answer questions from the audience.
As happens frequently when I am in the room with a group of healthcare professionals, the conversation turned to language. Okay, I made that happen. In fact, the words I used were ‘I’m going to hijack this conversation because we really need to talk about language here.’
One of my biggest pet peeves is the jokey, and somewhat snide, comments made about people with diabetes making up numbers in their diabetes log books. Because, it’s not a joke. It’s not something for HCPs to roll their eyes over and dismiss as ‘non-compliant’ behaviour.
The word that was used for PWD who make up numbers in their books was ‘fakers’. I cringed the moment I heard the word. And cringed even more at the audience’s response – laughter, heads shaking from side to side and knowing looks. I looked around the room and knew that we would be talking about this later on in the evening!
As I pointed out when the panel was seated on the stage, I absolutely did this. And I was incredibly good at it – different coloured pens, splotches of blood on the pages, dog-eared corners of the book. Once, I even splattered a few drops of juice, because on that particular page, I was having a lot of lows and I thought the juice would make it look more authentic.
Now, let’s all just remember for a moment that I was diagnosed as an adult. This wasn’t insolent teenager behaviour. This was a woman in her mid-twenties who was terrified of disappointing and being judged by the HCP to whom she would be handing the grotty book and its made up numbers.
I told the room my story of this last night and there was laughter – because the way I spoke about it was amusing. It was a cheeky anecdote. But at the time, it wasn’t funny. I was scared, I hated checking my BGL, I was paralysed by numbers that didn’t make sense and I didn’t know what to do about it. So I lied. Of course my HCPs knew that. And I knew my HCP knew.
But the question is about WHY people do this. The discussion needs to stop being about diabetes at that point, because really, managing BGLs and most other diabetes tasks is not the issue here. The issue is distress, anxiety, fear. And, in my case, I felt desperate.
One of the panellists made the point that the reason that he brought it up was because HCPs need to know what to do when someone is ‘faking’ their numbers. He’s right. I completely agree. And then there needs to be understanding of how to approach it, which is likely to be different with each PWD.
For me, it took until I found a HCP who I felt I could trust – one who wouldn’t judge the numbers that were out of range (which one HCP always circled in red pen, making me feel even more like a delinquent adolescent) – and was interested in knowing what was stopping me from feeling able to check my BGL.
When we worked through that, I was better equipped to not only regularly check my BGL, but also to deal with the numbers and act upon them. I came to understand that a number was nothing more than a piece of information that I could use to make a treatment decision – not an indication of me being a good or bad person.
Language does matter. And words count for a lot. Using the word ‘faker’ in this context is loaded with judgement and accusation, and even if that is not the intention, it made me – a person with diabetes – feel very uncomfortable. But mostly, it fails to consider the real problem at hand which is not that a PWD is making up numbers in a book. It is why they feel the need to do that.
Some people may have seen news reports yesterday about changes to access of blood glucose strips for people with diabetes in Australia. Some reports were a little light on detail (and by ‘light on detail’ I mean ‘incorrect’) and there has been a lot of discussion on SoMe with people trying to get the facts and work out what it means for them.
This information on the Department of Health’s website gives all the details to date.
Following the news piece, quite a few people have been in touch asking me if I can provide some clarification. I have no details other than what has already been announced publicly. When the announcement was made last year, I wrote this piece about it, so for some background of the issue – and my take on it – have a read.
But what does it mean TODAY for people with diabetes in Australia?
- These changes DO NOT affect people with type 1 diabetes or insulin-treated type 2 diabetes.
- No one should be denied access to BGL strips today, tomorrow, next week or next month. While the change in policy took effect from 1 July 2016, an initial six-month supply has been automatically granted to all NDSS registrants with non-insulin treated type 2 diabetes. This means the earliest anyone may be affected by the changes is 1 January 2017.
- Further information will be coming, so keep an eye on the NDSS and Department of Health websites.
- Speak with your HCP about the changes if you are concerned about how this will affect you and your diabetes management.
I know that many of us are feeling a little confused about diabetes supplies at the moment with the recent changes in how we access our consumables, and this seems to just be another change we need to deal with.
And as with all change, there is often a lot of speculation and misinformation being shared around. The sensationalist nature of yesterday’s reports did nothing to allay any of these concerns and only fuelled the fire of uncertainty. And is yet another example of poor reporting of diabetes in the media.
I’m almost ready to take a deep sigh of relief, because National Diabetes Week is almost over. It’s been a busy week – it always is. I’ve been working for diabetes organisations for a very long time, and have seen quite a few national campaigns, including some of which I was very, very critical. (Just ask the Comms Manager I worked with for over 10 years who had to deal with me complaining a lot!)
But today, I am writing only of this year’s campaign, which has highlighted the need for a National Diabetes Amputation Prevention Strategy. The campaign has not pissed me off which is a pleasant surprise for everyone who has to work with me. I don’t think it is a scare campaign. I don’t think it is graphic and gory. And I don’t think it is laying the blame for developing diabetes-related complications on people with diabetes.
On Sunday, within hours of the launch, the criticism started. I posted this on my FB page, and my frustration is pretty apparent.
Throughout the week, in between doing interviews trying to raise awareness of diabetes and why it is really crap that each year 3,740 have diabetes-related amputations that could have been prevented, I have read many comments about the campaign. A lot of them – in fact the vast majority – are really positive. Many people understand the complexity of communicating a really difficult message to a very diverse audience. But not all of them.
I have never subscribed to the idea that everyone needs to have the same opinion. And I have never ever shied away from people criticising me or the work I do. I like robust discussions, especially if they are respectful and that everyone is open to considering – not necessarily agree though – with all sides to the debate. (Unless we’re talking vaccination. Then there is only one side.)
But I what I absolutely despise is that any time diabetes is in the media and someone doesn’t like the angle, because what is being discussed is not relevant to them, or they don’t like the message, they respond with immediate outrage and negativity and refuse to consider other positions. This is not just a diabetes thing – social media outrage is the default position for many – hell, I’m guilty of it too. But often with the outrage comes assumptions and the perpetuation of misconceptions about diabetes.
In my capacity as an employee of a diabetes organisation, I have read the comments and not replied. That includes to the direct messages I have received on Twitter and Facebook and email that have been personally attacking and have called me some pretty choice names. (There is no denying the power of deleting and blocking!)
But today, I thought that here, I would put down my responses to some of the comments I’ve seen online. (Please remember that this is my blog and all opinions are mine. Nothing I have written here necessarily reflects the thoughts of the organisation I work for.)
- The campaign is not relevant to people with type 1 diabetes.
Of course it is! You have diabetes – any type – and you are at risk of complications. That’s the reality. It’s unpleasant; I hate thinking about it; it terrifies me.
Here is what denying this reality does: it adds shame and stigma to those who do live with complications. Had a limb amputated? Well, obviously it’s because you didn’t look after yourself and are not a diabetes superhero like me.
- Type 1 and type 2 diabetes are not the same thing.
Yeah, I know. I get it – they are two different conditions. Sometimes though it’s not relevant to differentiate. 4,400 people have diabetes-related amputations each year. Some are type 1 and some are type 2; some are men and some are women; some are older and some are younger. They are all people and they all have diabetes.
- People already diagnosed with diabetes know what happens if their condition is not well managed.
Absolutely not true and a dangerous idea to perpetuate. And this sort of comment is a brilliant example of not being able to look outside your privilege bubble.
If you are in a position to know a lot about your health condition, have access to specialist care, have wonderful support around you, (or know where and how to access support), can afford the latest treatment and technology and are managing really well – that is fantastic. I am one of those people and I know how lucky I am. But many people do not. If you are sitting on the end of a computer, complaining on Facebook and/or blogging about your experiences, you are privileged.
If you are one of those people and think everyone else is just like you, you are wrong and I would really urge you to maybe look beyond the Facebook page where you do your bitching and moaning.
Also – what is it saying to the people who have done everything ‘right’ and still have developed complications?
- People with type 1 are well aware – it’s people with type 2 that have no idea what they are for if they keep mismanaging their health.
Really? Just wow! Let’s break this into two sections:
- It’s a mighty big assumption to make that all people with type 1 are aware, capable and well-informed of their condition. It’s also incorrect. And it says that we don’t need to be focusing on people with type 1 because we are all clever clogs and know everything!
- The idea that it is only people with type 2 diabetes who have no idea is wrong and also really stigmatising. And it shows a complete and utter lack of understanding about type 2 diabetes and those living with it. Maybe that campaign about the different sorts of diabetes needs to start from within the diabetes community first. How can we expect people completely unaffected by diabetes to know the facts of those of us in it are so ill-informed at times?
- What would you know? You don’t live with diabetes.
Hi. I’m Renza (or Brenda, Peta, Wenzer). Here is my blog about living with diabetes.
One of the things I have come to learn is that there is no way that a single diabetes campaign will appeal to everyone or be relevant to everyone living with the condition. And that there is no making all people happy all of the time. In the spirit of this piece of advice, I am calling the week over and putting it in the vault. Have a great weekend everyone!
The new Prime Minister of Britain has type 1 diabetes. I am sure that you have heard this about her, possibly mixed up in the commentary about her hair and shoes. (Which is, of course, THE most important thing about a woman who has become one of the most powerful leaders in the world and absolutely what we should all be talking about. Ugh!)
Pretty much everyone I have ever met has informed me that the new PM has type 1 diabetes. I have had calls, emails, Facebook posts and texts from people excitedly telling me that Theresa May is just as pancreatically-challenged as me! Many have asked if I am excited that we have a new pin-up gal for ‘our cause’.
I’m not commenting on May’s politics – that is actually totally irrelevant to how I feel about having a world leader with type 1 diabetes.
Here is what I would love to see about Theresa May’s own diabetes. Very little. Because I don’t want her type 1 diabetes to become a focus. I don’t want type 1 diabetes to be ‘blamed’ for questionable decisions, political gaffs, or the fact that she fell asleep in parliament last week.
Because people without type 1 diabetes make bad decisions all the time. And people without type 1 diabetes make political gaffs. (Barnaby? David? I’m looking at you two…) And people without type 1 diabetes fall asleep in parliament because often there is a man in a suit speaking in a monotone about something possibly rather uninspiring. For a very, very, very long time.
In the same way that every move AFL player Paddy McCartin makes is scrutinised from the position of his defective beta cells, I fear that may be the case for Theresa May.
A world leader with type 1 diabetes is brilliant because it can show people that diabetes need not be a barrier to being at the top of your game. We all love a story like that!
But being the excuse for any negativity – or becoming the focus of her time as PM? That can do ‘our cause’ more harm than good.
Related – but not really
Discussions about Theresa May have included me saying: ‘Well if Jed Bartlet can be President of the United States of America with MS, Theresa May can be PM with type 1.’ I had to be reminded that Jed Bartlet is not real – and no matter how hard I hope and wish for it to be true, it never will be. Damn.
The contradictions in diabetes are complex and confuse my little mind sometimes. Today is one of those days.
Getting the message that diabetes is serious – and needs to be taken seriously – is sometimes messed up in our determination to show that diabetes won’t stop us from being superheroes. In our proverbial capes*, we do amazing things; we are brilliant; we advocate; we inform. All while pretending to be a pancreas.
We use language that empowers us and makes others see us as forces with which to be reckoned. I say I live with diabetes (often saying I live well with diabetes, never struggle with it. I refuse to even suggest for a minute that I am suffering with or from diabetes and will correct anyone who suggests otherwise.
But is that undermining the seriousness of it? And is it ignoring the days where it does seem like a battle – and an uphill one at that.
I refer to diabetes as a condition, never a disease. Is that the right terminology? And why do I do that?
According to this piece at Health Writer Hub a disease is an …’ abnormality in systemic function…that causes both physical and emotional signs and symptoms’. A condition is …’an abnormal state of health that interferes with the usual activities or feeling of wellbeing’. Both are actually correct when talking about diabetes, and yet I (and many others) object to using the term disease.
Perhaps we don’t want to be thought of as ‘diseased’ or as if there is something wrong with us and ‘disease’ does suggest that.
We want people to think we are superheroes who manage to not only thrive and excel with the condition (disease?) we have been dealt, but also demand that they don’t think of us as any different to everyone else and are given the same opportunities and choices.
Are we doing ourselves a disservice by appearing so ‘in control’ and, dare I say it, ‘normal’, when there is truly nothing normal about having to pretend to be an internal organ, day in day out?
I don’t for a minute want to stop being the empowered, confident, secure and capable person I am. But sometimes I do feel that in all my cheerleading efforts, I sometimes forget – or rather refuse to admit – that it can be tough.
And mostly, I wonder, and fear, that if we all are making diabetes look so easy to manage and impact us in such insignificant ways, do others not see and understand the urgency that we feel every single day in our desire to make things better? Who needs a cure if we look so bloody happy and competent with our little condition?
Today I attended the Victorian Kellion Victory Medal Award Ceremony. There before me, sixty-six people were awarded medals for having lived with diabetes for 50, 60, 70 and 75 years.
I write about this event every year, and each year, I write about how much hope and inspiration I feel while sitting in the room.
Because it’s true. I walk away from the Kellion awards full to the brim and amazed at what these people have achieved. I’m never sure if it is despite or because of their lives with diabetes that I feel this way. But, undeniably, it is a special day.
Frequently the stories are the same – a shock diagnosis, sometimes a misdiagnosis. Many are unable to pursue their chosen career, especially in days where teaching or nursing were not possible vocations for people with type 1 diabetes. Many spent a lot of time in hospital as they adapted to their post-diabetes-diagnosis life. And many reminisce about injecting into an orange, which apparently was the done thing for a newly diagnosed person 75 years just as it was 18 years ago when I was diagnosed – and still today!
And they share tales of brutal management instruments and tools that in equal measure terrify me and make me glad of the time I was diagnosed.
The hope exists for me because when I look around the room, and I listen to the stories and I speak directly to the recipients and their families as they proudly hold on to their well- earned medals I don’t see diabetes. I see people.
They don’t all claim that diabetes has been fun or that it has been a breeze. In fact, some of them are really open about just how tough it has made their life. But even those who say they have really struggled, still do not believe diabetes has been the single most defining aspect of their life.
I’ve always said that I wish all newly diagnosed people could meet a Kellion medal so they can see that everything will be okay. But I think that was a little naïve of me and actually undermines just what it has taken for these people to be standing there in front of us, accepting their medal. And it also suggests that diabetes hasn’t actually had some sort of impact on their lives.
These are ordinary lives made extraordinary by diabetes. And while their achievements are not there for my benefit, I am so glad that I get to hear their stories.
Source – @DiabetesVic
This morning, I sat in a restaurant in New Orleans with three of my favourite people and diabetes advocates. If anyone could bottle the tenacity, passion, determination, guts and cheekiness of these three women, they would make a fortune and be able to solve all the problems of the world.
I listened to Anna, Christel and Melissa – who I am lucky enough to call friends – talk about their work and we discussed the US health system which made me shake my head in disbelief and confusion. I don’t understand it; I doubt I ever will. But these three not only navigate the system themselves, they are doing it for others as well as they trying to improve things.
All week I have been around people who are involved in important and life-changing work in diabetes care. From those who are developing smarter devices, using data better, improving access and doing reseach, the dedication and commitment to improving the lives of people with diabetes has been very visibly on show at this conference.
And I have been reminded that at a conference where there are ground breaking announcements made and new and exciting tools launched, it is not the flashy conference centre and the lights of the Exhibit Hall that tell any of the story. It is years and years and years of work, of people plugging away and just doing what needs to be done, until the excitement of telling the world.
This morning, I walked around New Orleans with a delicious, embargoed secret in my head that I was bursting to shout from the rooftops. Some of the exciting work I have been involved in over the last few years has started seeing results and today’s announcement from ALP health spokesperson, Catherine King (no longer under embargo, hence me writing about it….and shouting it from the rooftops) is an example of what happens when people do the hard yards.
Australians now have bipartisan support for CGM funding. The ALP pledge goes further than the Coalition’s, with access under its scheme being based on clinical need – not just age. This mirrors the submission made by Diabetes Australia, JDRF, ADS, ADEA and APEG in our joint proposal. (Disclosure: I worked on the this submission as an employee of (initally Diabetes Victoria and) Diabetes Australia and am acting as spokesperson for Diabetes Australia in any media.)
Today, there will be press and a media launch and lights and excitement as there should be. This is worth celebrating! And as I sit in my hotel room 33 levels above Canal Street in New Orleans, speaking with Australian news radio staff about the announcmenet and I am incredibly proud of what we have managed to achieve in Australia. This is a slow burn. It takes time, it takes commitment and it takes dedication. I love being surrounded by people who have it in spades.
More?
The other night, I drove through the pouring rain to Geelong to speak at an information session for healthcare professionals about CGM technology. The event was run by AMSL, the distributors of Dexcom here in Australia (the disclosure song and dance can be found at the end of this post).
I sat on the panel with Dr Natalie Harrison, a terrific local endocrinologist (oh – how’s THIS for a bit of disclosure – we went to kindergarten together!!) and paediatrician and diabetes technology champion, Dr Peter Goss. I was there to bring the overall IQ of the panel down, share the ‘living with CGM’ story and be the point of difference between the glossy information presented by the CGM company.
On the left – the numbers of all readings in the glossy propaganda (it’s about 6.2 in our language). On the right – real life.
Both presentations by the doctors on the panel were enlightening. They clearly showed how CGM could be used in a number of different scenarios. The thing I particularly enjoyed was how both speakers are using this tech as tools of empowerment for the adult or child with diabetes – not for any other reason. Both repeatedly said that although in most of the cases they presented, there was a reduction in HbA1c, the biggest benefits to the PWD was improved quality of life. (I may have done a little fist pump each time they mentioned that!)
Examples included shift workers, tradies working on construction sights, exercise nuts, kids, adults, teens – demonstrating a terrific cross section of the diabetes community who may – and indeed have – benefitted from the technology. There was also a discussion about how CGM is useful in specific target groups and situations, with a considerable time of the discussion being about low carb diets and CGM. (And can I say just how refreshing it was to have this discussed with little judgement from the speakers. Too often LCHF or just LC is dismissed by healthcare professionals without any willingness to accept that there are many people who are using this as part of their diabetes management and achieving excellent results.)
Dr Goss also mentioned how useful CGM tech can be for families where ‘dead in bed’ is a real concern because it can show families just how stable glucose levels usually are overnight, and therefore may help reduce a lot of the anxiety parents feel. (There was also a discussion about the significant emotion around DIB and how it is frequently overplayed. This is really important because while one person dying from DIB is one person too many, it is thankfully a very, very rare occurrence (as shown in all local and international literature). The fear and the risks need to be in perspective and unfortunately, that is not the case at all times, and the anxiety it is causing is unnecessary.)
After the official, smart speakers finished, I stood up. At this stage, the AV equipment had called it a night, so I put aside the few slides I had developed, and shared a few things.
I spoke about why I love this technology and why I choose to use it pretty much all the time. But I also spoke about its limitations – specifically the emotional and psychological barriers that are of concern. I raised the point that reluctance to use CGM by PWD could be for myriad reasons and to never assume what that reason is (this was in direct response to the suggestion from one of the speakers that often PWD refusing to wear CGM have something to hide). I suggested that for some, it is a huge step to agree to wear something attached to one’s body all the time – something that provides a lot of confronting information, beeps, alarms and can be downright annoying. This is not a small consideration – it is big!
I also spoke about the necessity to customise just how PWD use the technology. I explained how I turn alerts on and off, depending on how engaged I am with my care. I could see that didn’t sit well with everyone so I tried to explain that being able to deal with – and respond to – a couple of alerts, is better than having the all on and doing nothing because it is too overwhelming. Or simply not wearing the technology at all.
And I also spoke about how what I do to make CGM work for me, even if it is against the direct advice of the company – and HCPs. Case in point, my sensor and transmitter are on my arm at the moment. I have found that recently, I get better readings and the sensors last longer if that’s where I site them. I also leave the sensors in for a lot longer than the suggested 7 days. (Peter Goss concurred with both those statements saying that most of the children and adolescents he sees prefer to wear sensors on the upper arm. And there was a bit of a ‘who leaves their sensor in the longest’ discussion, with Dr Goss sharing that the record in his clinic is 26 days. I did disclose that while I have a mental block about going beyond 21 days, I know people who have doubled that!)
This is why it is important to hear directly from people who use the technology. While both doctors shared case studies, the focus was really on how CGM helped smooth out glucose lines. And of course that’s important. But equally important is the way we manage the technology in our life, because if we can’t find a way to get it to work for us, we won’t wear it. After the presentations, a couple of HCPs thanked me for being there and said that I had raised a number of things that they just had not considered before – all things that are usually missed when a PWD is not part of the discussion.
And it served as a reminder again that even though it is terrific to have people with diabetes represented in some ways in presentations at these sorts of events (or conferences, meetings etc.), the only way to hear the real story is to hear it from someone living it.
Thanks to AMSL for inviting me to speak, but more so, for putting a person with diabetes up there on the panel. We belong there.
Disclosure
I was invited to speak at this event by AMSL Diabetes, Australian importers and distributors of Animas and Dexcom. I was provided with product to speak at this event…. The team from AMSL did not hear or see my presetantio prior to the evening and the only direction I was given was to share my experience of using Dexcom. Which I did – the good, the bad and the ugly.
(For the record, although not really relevant, but I’m disclosing the crap out of everything here, I also use an Animas pump. That was wholly paid for by my private insurance company whose premiums I pay each fortnight through clenched fists of frustration as their premiums continue to rise. I also pay for the ongoing consumables needed to drive said pump.)
Diabetogenic 
