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Last night, I attended an event at Parliament House in Canberra, acknowledging and celebrating two milestones: 60 years of Diabetes Australia and 30 years of the National Diabetes Services Scheme (NDSS).

I spent the night chasing down people who were instrumental in the establishment of the NDSS to thank them for their efforts and try to explain just how significant the Scheme has been in my diabetes life for the last (almost) 20 years.

I never knew diabetes before the NDSS. On the day following my diagnosis, after spending the morning seeing my new best friends (endo, CDE, dietitian…actually, the dietitian and I never hit it off), I took a couple of freshly-filled-in forms to 100 Collins Street in the city and took a creaky elevator to the third floor. It was there I was introduced to the NDSS. I handed over the registration form and then the order form. Box after box was piled onto the counter in front of me and I looked at the unfamiliar words on unfamiliar boxes wondering where I was going to put it all and how much it was going to cost.

A few boxes of needle tips for insulin pens and a few boxes of glucose strips and a box or two of urine strips. It was tallied up and I was surprised that it wasn’t a lot more expensive. I was given a card and told to bring it in any time I needed further supplies.

As I came to learn about diabetes in other countries, I realised just how unique the NDSS is and how fortunate we are in Australia to have it.

I proudly speak about the NDSS to diabetes friends from all over the world. Often, these friends are astounded that the NDSS is free to join and available to everyone with diabetes. They are astonished that the price of diabetes supplies is the same for everyone and not reliant on insurance. Often they can’t get their head around the idea that we can choose which strips to use for which meter we prefer, with no interference from an insurance provider. And they simply cannot believe that while there are some limitations to the quantities that we can purchase, the amount we can access is actually quite significant, and there are allowances and exemptions for people who need more than the limits determined by the government.

The NDSS is more than a diabetes supplies program. It is intrinsically linked with Diabetes Australia who was instrumental in the establishment and implementation of the NDSS back in 1987. Diabetes Australia continues to administer the NDSS and runs all the services associated with the Scheme – from diabetes camps, information events, information resources and support services.

But more than that, Diabetes Australia continues to lobby the government to extend the NDSS. More than five years of consistent lobbying resulted in the CGM initiative being announced and launched, and Diabetes Australia is actively urging the broadening of initiative to include other groups of people with diabetes who benefit from CGM (as outlined in the original joint submission from Diabetes Australia, JDRF, ADS, ADEA and APEG). Back in 2004, following a similarly consistent campaign, pump consumables were added to the Scheme. Recently, Diabetes Australia’s responded to the stakeholder engagement regarding the listing of Freestyle Libre on the NDSS with this submission. From the initial lobbying for the introduction of the NDSS to today, the link between Diabetes Australia and the NDSS has resulted in supporting people living with diabetes and making our lives easier.

The NDSS remains the only scheme of its kind in the world. It has enjoyed bipartisan support from consecutive governments.

Of course, our health system is not perfect here in Australia. I believe that there should be more funding and more subsidies on the NDSS. I don’t believe in restricting access to glucose strips for people with type 2 diabetes not using insulin. I know that a lot of people still find the cost of diabetes prohibitive and there is still a divide between those who can afford the latest technologies and those who cannot.

But the NDSS does go a long way towards lessening the burden in some ways and I certainly am glad – and proud – that we have it.

Disclosure

I have been an employee of Diabetes Australia (and Diabetes Victoria) since 2001. I cover all costs for all NDSS products I use.

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Last week, a recipe was posted on the Medtronic Australia Facebook page. The recipe was for a Chocolate Tim Tam Cake, which looked rather gooey and very chocolate-y.

I was looking for something to bake over the weekend, but decided that this cake wasn’t really the sort of baking I was up to, so I scrolled on, searching for the right recipe for my baking adventures.

But for some reason, I kept seeing the recipe appear in my FB feed, a couple of times because it had been posted in some of the LCHF groups I follow.

And then I did what I know I shouldn’t do. I looked at the comments, and down the rabbit whole of the very angry LCHF brigade I tumbled.

I am always very wary when it comes to dietary advice. I don’t follow the Australian Dietary Guidelines because I find the quantity of carbs recommended is just simply too difficult for my non-functioning pancreas. Or rather, for my (frequently barely-functioning) brain which has to act like my non-functioning pancreas. Also, I just don’t really want to have to bolus large quantities of insulin in one go. But that’s just me.

Equally, I don’t follow a paleo diet or I Quit Sugar or Dr Bernstein because anything that is so prescriptive is never going to work for me. Instead, I pick and choose what I know will work for me and, more importantly, what I can manage sustainably. I couldn’t really care less what other people with diabetes (or people without diabetes) eat, because I’m far too concerned with my own diabetes existence. And being obsessed with the @TrumpGoogles Insta account

In exactly the same way I would never accept a HCP who judged what people eat or the tools people choose to manage their diabetes, I don’t take too kindly to other PWD (or anyone, really) suggesting that people who prefer to eat in a certain way are ‘killing themselves’. This is what was happening in the case of the recipe posted by Medtronic.

You can read the comments yourself (the post is here), or you can just assume that they all had to do with the criminality of a company daring to post the recipe while suggesting that people with diabetes might want a piece of cake. And varying versions of ‘you might as well just kill yourself’.

I’m not bagging the LCHF movement and anyone who fully subscribes to it. But I am calling out the frequent aggressive and belligerent rhetoric of some LCHF folk. I’ve had more than enough disrespectful and rude comments sent my way anytime I write about food or share recipes. Despite that, I’m not for a minute suggesting that the way you are choosing to eat is harmful, in fact, I completely agree that eating LCHF is one way for some people to best manage their diabetes. I know a significant number of people of have changed to this way of eating and they have found the results to be incredibly positive.

I also know a significant number of people who simply haven’t found it to be the right thing for them. Some say they have found it unsustainable, others say they found it boring. Others say they are simply not interested because they found it too restrictive, or too expensive. And some say the results they saw simply didn’t warrant the effort they needed to put in.

I know that for me, exclusively following a LCHF diet doesn’t work because I just don’t do food restriction. I’ve never dieted in my life and I don’t do well with being told what I can and can’t eat. I also know that I can quite easily manage to limit my carbs to around 50 grams per day and that the results I have seen since doing that have been worth the effort for me. I also know that all carbs are not created equal and I try to be smart about what I choose to make up those 50g (or so).

Oh – and mostly I know that sometimes…sometimes, those 50 grams of carbs are going to be a doughnut. I’m okay with that. Doughnuts are delicious and bolus-worthy.

As I firmly and resolutely believe, everyone has the right to manage their diabetes in a way that works for them. And they have a right to do that without being bothered by others. Being told that what you are eating is ‘poisoning your body’, or being told that the devices you are using are toxic helps no one.

Oh, and the personal attacks are also totally unnecessary. The person who sent me an aggressive FB message after seeing this profile photo can just pull their head in. I ate a few bites of chocolate cake (the best chocolate cake ever), not ‘poison’. And yes – even after eating those few bites, I still have both my legs, and my kidneys continue to work just fine. But thanks for asking.

Eat how you want. Let others eat how they want. It’s really not that hard.

For the record – this is what I made on Saturday evening. (This one went to the neighbours, but I also made a smaller one for home.) It’s a blueberry crostata. I added a little ricotta underneath the fruit and made a ridiculously buttery pastry to hold it all together. Super easy. Super delicious. (And my CGM trace peaked at 7.3mmol/l for anyone wondering…)

There’s lots happening, but I can’t look away from my Loop app at the moment because I’m so damn excited and obsessed! (I’ll be writing something about it sometime this week.)

But if I wasn’t doing that, I’d be (re)reading these things…

Why it costs so much to see a specialist
I’ve always paid to see my endos privately. In fact, I generally ‘go private’ for all my healthcare needs – I can’t remember the last time I was bulk-billed for a medical consultation.

It does cost a lot, and I am grateful I can afford it, but the excessive costs often discourage people from seeking the right care they need. Of course, we do have excellent public health in Australia. My choice for seeing HCPs privately include wanting continuity of care, and not being subject to frequently very long waiting periods.

This piece in The Conversation looks at why specialist care is so expensive. And what can be done to reduce costs.

Lookiee! A diabetes Wookiee!
For those who participate in OzDOC (and other DOC activities) you may have come across David Burren. I met David last week to talk all things tech (actually, I just fired questions at him about Loop and he patiently answered them without rolling his eyes even once). He’s started a diabetes blog all about diabetes and technology and, thankfully, it is in language that even I can understand.

Check out David’s Bionic Wookiee blog here.

Statues are like tumo(u)rs.
With all the nonsense going on in America at the moment, this piece from McSweeney’s most adequately explains why the ridiculous idea that statues commemorating less than favourable moments in history need to remain. Here’s my favourite part:

I view this tumor as an important symbol of your body’s history and heritage. Removing the tumor would be yet another example of misguided medical correctness in today’s liberal America. I protest this surgery and refuse to whitewash your rich medical history. The tumor must be kept prominently displayed inside your body.

Do better, America. We all know you can.

More on what’s on the inside
Mel Seed’s blog about normalising mental healthcare in diabetes follows on from DX2Melbourne and is well worth a read. Read it here. 

Diabetes is just…
This…

Faster insulin coming to Aus
A couple of weeks ago, I shared on my socials the exciting news that ultra-fast insulin, FIASP, had received TGA registration. No actual ‘launch’ date info as yet, although next week is the ADS ADEA Annual Scientific Meeting, so we may hear more then.

And in news that we already know…
Apparently, CGM is not just for abdomens anymore… File under ‘No Shit Sherlock’.

Swear-y
My blog emails keep getting blocked by the profanity filter at my husband’s work. Every now and then, he forwards me the message he’s received which states that the email was not delivered due to ‘offensive language’. #SwearyWife

This Twitter account definitely wouldn’t make it through, but it’s one of the best things I’ve seen on the interwebs for a while. I’d like to print THIS up poster size and put it on the wall of my office/wear it on a t-shirt, but perhaps that’s not appropriate.

D-parents and sharing the scary parts of their child’s diabetes online
I’ve linked to Moira McCarthy’s writing before because I think that she gets it right every single time she writes about the role of parents in their child’s diabetes.

This piece asks parents to consider if sharing their child’s scary and dramatic diabetes stories online is doing more harm than good. (I rather clumsily explored a similar issue last year in this post.)

Read her piece at ASweetLife here.

4Ts on Diabetes Mine…
Last month, during National Diabetes Week, in an endeavour to get our 4Ts message out as widely as possible, the good folks at Diabetes Mine allowed me to write a little about our campaign. You can read that here.

Living and loving someone with diabetes
As much as I think I am the most delightful and easy-to-live-with person in all the world, I have to admit that diabetes can and does impact on all relationships… and makes me perhaps not the most delightful and easy-to-live-with person. Aaron and I chalked up 23 years together yesterday. Diabetes has been part of the equation for over 19 of those years.

Diabetes advocates Nicole Johnson and Lorraine Stiehl have written a new book which has been called a practical guide to loving a person with diabetes. I’ve ordered a copy and will be leaving relevant pages open for my loved ones to read.

You can get a copy of What To Do When Your Partner Has Diabetes: A Survival Guide from Amazon. 

Meme-y and true
There are a lot of diabetes memes out there, but sometimes I see one that just hits the mark so perfectly. Such as this from a TuDiabetes community member:

At #DX2Melbourne last week, we had a live webcast in an attempt to include people not invited to be part of the event to hear from some of the bloggers and contribute to the discussion. The hour-long webcast was about diabetes and mental health.

With delusions of Jenny Brockie and Tony Jones, I facilitated the discussion – which was actually quite difficult as there were thirteen of us sitting in a row meaning we couldn’t all see anyone other than who was sitting directly next to us without leaning dangerously forward. Also, I kept nearly falling off my stool, which suggests that I am the most ungraceful creature to have ever been positioned in front of a camera.

I’d put together some questions and discussion points to guide the discussion, but was very open to any tangent the group wanted to take to really navigate and explore the topic of diabetes and emotional wellbeing.

As the discussion flowed, I couldn’t help but feel a sense of déjà vu. Another talk about how diabetes affects us emotionally; another talk about not getting the support from psychologists and counsellors that we need; another talk about how usually it’s not even recommended that we may need to speak with someone about the mental health aspect of living with a chronic health condition; another talk from well-connected diabetes advocates saying that there is more to diabetes than simply being told our A1c, or any other number for that matter.

Amongst all the chatter, I asked myself how many times I’d participated in talks, how many talks I’d given, how many tweet chats I’d tweeted in, how many blog posts I’d written that were about the emotional side of diabetes. And then today, on my TimeHop app came this tweet, from an OzDOC tweet chat about mental health, held exactly 12 months ago today:

I’m not saying this because I think we’ve ‘done’ this topic and should leave it alone now. Not at all. I’m just suggesting that we’ve been having the same discussions about this really important topic for a long time, and yet diabetes care still seems to have this imaginary, yet somehow real, line down the middle, with the physical aspects of diabetes to one side, and the emotional aspects on the other as if the two are not fundamentally connected.

I knew that there would be some people listening in who would be hearing all of this for the first time. It would be the first time that although they had probably worked out that there was something missing from their diabetes care, they weren’t sure what it was. Or, they may have known they needed to speak to a psychologist or a counsellor, but didn’t know who to ask about it…and anyway, they may have thought, surely if this was something that lots of people with diabetes feel, someone would have mentioned it by now, right? Right???

Nineteen years I’ve had diabetes. And for at least seventeen of them, I’ve understood and known the importance of checking in on how the emotional impact of diabetes is contributing to how I am managing my diabetes. Or how I am not managing my diabetes (see above tweet….).

The idea that we can separate our mental health and emotional wellbeing from our diabetes is ridiculous. A condition that permeates every aspect of our life, moves in, makes itself a home and lords over us with terrifying threats of what lies ahead, impacts on our abilities to manage the day-to-day physical things we need to do.

Those watching the webcast at home could submit questions for the panel. A couple of diabetes healthcare professionals were watching and one asked a question that, as I read it, made my heart sink. He said that he sees people with diabetes who he believes would benefit from seeing a psychologist, but he is concerned that they will be offended if he suggests it. He asked the panel for ideas on how to broach the subject without causing offense.

Why did my heart sink? Because the question showed that there is still so much stigma associated with seeing a mental health professional, that other HCPs – on the ball, sensitive ones who know and understand the intersection between diabetes and mental health – feel worried that they might upset someone with diabetes if they suggest referring to a psychologist.

Until we normalise psychological support – until at diagnosis when we’re introduced to our new diabetes HCP best friends and psych support is part of that team – the stigma will continue. I’m not suggesting that everyone will need or want to see a psychologist. But putting it on the list, alongside a dietitian and a diabetes educator and an eye specialist will at least people understand that, if needed, there will be someone there to help with that particular piece of diabetes. (And to be perfectly honest, I really do wish I’d seen a psychologist at diagnosis rather than the dietitian who has scarred me for life with her ridiculously large rubber-mould portions of carbohydrate she insisted I eat at every meal!)

I don’t feel as though I am a failure because I have needed to consult a mental health professional in the past. I don’t think that it suggests that I can’t cope or that I can’t manage diabetes. I see it as important a part of my diabetes management as anything (and anyone) else. A lot of the time, I don’t feel as though I need to see someone. But other times, I do. And that is fine.

DISCLOSURES

Abbott Diabetes Care covered all my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if requested, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott – or anyone else, for that matter.

For the last sixteen years, I’ve been directly involved in National Diabetes Week (NDW) in some way. Admittedly, I missed a couple because we decided the middle of July is a good time to go to New York to escape the Melbourne Winter. Two years ago I missed half of NDW because I was in Orlando at FFL – I returned just in time for Kellion! Oh, and there was the year I had a little wee lass who I couldn’t stop looking at and cuddling.

But whichever way you look at it, I’ve been involved in NDW for a while. A lot of that was spent very much on the sidelines, because the campaign was type 2 diabetes focused and I was not. Or rather, my role at work was exclusively directed towards type 1 diabetes activities, and campaigns were always about raising awareness of type 2 diabetes.

This year, for the first time, there is an element of the NDW campaign that is exclusively focused on type 1 diabetes and it was launched today. It’s all about the importance of early diagnosis of type 1 diabetes, aiming to reduce the 600-plus hospital admissions each year because the early signs of type 1 diabetes have been missed. I know so many stories of people with diabetes being told they had a virus/urinary tract infection/were run down/growing pains (in the case of kids)/needed a holiday, and sent home with a prescription for antibiotics. Their type 1 diagnosis only came after ending up, very sick, in emergency, many needing ICU attention.

The campaign highlights the 4Ts of type 1 diabetes – Thirst, Toilet, Tired, Thinner.

We leaked a sneak peek of the campaign on Saturday to let everyone know that it was coming. The leaked video, which tells the diagnosis story of 9-year-old Isabelle, has been viewed by tens of thousands of people.

The response to the video and campaign details has been overwhelmingly positive, with people sharing the video widely amongst their networks. And comments have also been encouraging, telling us that the campaign is right in its tone and focus.

Today, the campaign was officially launched in Brisbane and all materials are now available for you to see and share. Here’s the campaign poster:

What can ­YOU do?

As this is a public awareness campaign, we need to get this information out to people outside the diabetes community. Mostly, those of us affected by diabetes now know the early signs of type 1, but that’s not the case for people who don’t have type 1 or know someone living with it.

You can help by sharing the video on all your social networks. Set your shares to public and encourage your friends to watch and share.

Share the poster – both online and off. You could print off a copies and take them to your GP office, school, supermarket and anywhere else with a community notice board. Ask your church or community group, or child’s school if the poster could be shared in newsletters.

Also, I wrote this piece for Mamamia Women’s Network – again as a way of reaching an audience outside the diabetes world. Please read and share this too.

Use the following hashtags: #ItsAboutTime / #NDW2017 / #4Ts

My A1c came back a few weeks ago in my target range. As soon as I saw the number, I said to my endo: ‘It’s because of this,’ and I gently patted my arm where my Dexcom was sitting firmly, doing its thing.

I was right. Wearing CGM fulltime has allowed me to better understand what is going on with my glucose levels and how they responds to a variety of different factors.

Puppy on my lap and CGM on my arm.

But it’s only part of the picture and the more I’ve thought about it, the more I’ve come to realise it. I’ve been using CGM almost fulltime for four years now, yet this A1c was ‘more’ in-range than any other in that time.

It can’t just be the device.

No, it’s when I add the low(er) carb way I’ve been eating to the equation that the improvement starts to make sense.

The most obvious thing I noticed when I started eating lower carb was that my CGM trace stayed far straighter for far more of the time.

Before I started eating this way, I’d see a lot of spikes. Sure, I’d come back into range after an hour or two, but there was a good while there that I was above range while I waited for the insulin to do its thing with the carbs I’d just ingested. Insulin isn’t perfect; its action can be unpredictable.

Eating lower carb means the spikes just don’t happen as they used to. Of course there are other contributing factors that do cause my glucose levels to head out of range, but by eliminating – or rather minimising – the one that is most responsible has resulted in a significant change.

So, what is that change? It’s all about time in range (TIR).

And that is how I now measure my glucose management. It’s not about A1c – I don’t like averages because they conceal a lot of what is going on. The A1c average might be a pretty number, but what is going on outside that number to get there?  But when I look at how much of the day is spent in range, there is less place to hide. It is starkly clear the days that I am within my upper and lower limits.

And there is a flow on effect from more time in range. When I think about how I feel on the days that I am far more in range than out, I feel better – more energised, more focused, more able to just get things done.

CGM data easily provides me with this data (and flash glucose monitoring would as well) so I can see at a glance just how much of each day is actually spent in my target range. This means that I don’t really care about what my A1c is. It may creep up a little bit, but if overall I am spending more time in range, then I’m happy.

This is just another reason that A1c measurements are flawed. It was first recommended as a way to measure diabetes management back in 1976 and a lot has happened in diabetes since then. I’m certainly not suggesting that we throw it out the window. But I am saying that with new (and some not-so-new) tools to provide even more information – more meaningful information – I certainly am not using it as the only way I to track and measure how I am going.

TIR. I’m calling it the new A1c! (And adding yet another acronym to my diabetes lexicon…)

Want more? This great piece about ‘going beyond A1C’ from diaTribe is a must read.

I’m a little cranky this week. At least, that’s how it may seem with some of the ways I’ve been responding to things I’ve seen online.

Yesterday, mice were cured again which was awesome and wonderful if I were a mouse, as suggested in the photo to the right.

Alas, I am not, so I felt the way I usually do when I hear of diabetes disappearing in rodents – ambivalent, as I crabbily pointed out to anyone who would listen. (It was quite timely when this article came across my radar which did a good job explaining how mice and humans are different and therefore what works for a mouse may not work for a Renza…or any other human.)

And then there was Monday’s post about the Twitter discussion about how much power and influence healthcare users have in the healthcare system (spoiler alert: the answer is very, very little…).

But today, I’m writing about an ongoing Twitter discussion that has me shaking my head for different reasons.

I wasn’t around the diabetes world when home blood glucose monitors came onto the market. I was handed a meter the day I was diagnosed in 1998, and I was able to take myself off to an NDSS outlet and pick up strips. Blood glucose monitoring was expected then, and I was easily able to access what I needed to meet the recommended glucose monitoring treatment I was prescribed. I remember being told just how essential it was that I prick my finger and check my glucose levels before meals and before bed – at least. This was the technology that was readily and affordably available to people in Australia and healthcare professionals were very, very in favour of using it.

But it wasn’t always the case.

In the early 1980s, home blood glucose meters started being offered to people with diabetes to take home and use. It was the start of self-monitoring blood glucose (SMBG) – before this, it was all about weeing on a stick and analysing colours. The advent of SMBG is certainly one of those moments on the diabetes timeline that stands out as an important step in diabetes management and improved care.

At the time, there was a lot of criticism of this new-fangled device, with many HCPs believing that it wouldn’t take off, the expense was needless and that there was not enough evidence to support the ongoing subsidisation of such technology. According to a short reflection piece to BMJ in May 1998, the introduction of SMBG had clinicians believing home glucose monitoring ‘a dangerous practice’.

As insulin pumps became more popular, the same attitudes were emerging and in 2001, when I decided I wanted to start on a pump, I had to doctor shop before I could find an endo who would agree to filling out the necessary paperwork. The reasons for refusing my request ranged from ‘You’ve not had diabetes long enough yet,’ (I started on a pump almost three years after diagnosis) to ‘They’re not safe’, and ‘There’s no evidence a pump will improve your A1c’, to which I replied ‘Okay – but will it let me sleep in on a Saturday morning and present more flexible food timings and options? Because my quality of life is seriously impacted on having to freedom to live my life because of the restrictions my current diabetes treatment regimen demands and I am becoming burnout and resentful of it right now.’

I wish I could say that these ideas ceased when I started on a pump, but we still hear today people being refused pump therapy for a litany of reasons that, quite frankly, don’t hold water in most cases.

And then, the arrival of CGM was met with exactly the same reaction. ‘It will make people obsessive,’ and ‘there’s no evidence to suggest that it actually improves clinical outcomes and A1c’ and ‘It’s a gimmick – we have blood glucose monitoring that works just fine,

This, despite a recent talk I attended at ADA where endocrinologist, Steve Edelman from TYOCD declared:

Which brings us to the the Twitter discussion this week which centred around FreeStyle Libre and concerns that there is not enough evidence to warrant subsidy of the product in the UK (following a report on the device from NICE in the UK). Arguments shared in 140 characters or fewer very much centred on the lack of evidence about the Libre.

I understand the arguments: clinicians were calling for randomised control trials (RCTs) to provide the evidence they feel comfortable with before they are willing to recommend a product: they want evidence to support clinical outcomes (i.e. lower A1c).

The problem here is that RCTs are costly, take a lot of time and often don’t measure anything more than clinical outcomes. Plus, they are rarely, if ever, co-designed by the people impacted by whatever is being studied.

It was the same sentiments as when other new tech was released into the market. Often it’s new diabetes tech that provides the user with more information, more data….and more control over how and what they are doing to manage their diabetes.

The pattern repeats itself each time there is something new: clinicians are wary (which, it could be argued is their role), people with diabetes are excited. In the case of Libre, I know of many people who, after years of refusing to measure their blood glucose due to pain and intrusion, have started actively monitoring their glucose and making meaningful treatment decisions due to the ease of Libre. One woman said that it has meant that for the first time in over a decade she feels she actually has some idea of what is going on with her glucose levels which has resulted in her making smarted food choices.

As I read the tweets, I started experiencing very strong feelings of déjà vu. And I also was once again reminded of why so many subscribe to the #WeAreNotWaiting movement. And I ask: Is it any wonder that people are hacking diabetes devices and building their own systems to do what we want them to – what they are capable of doing – now?

P.S. Just a reminder that there is currently a stakeholder engagement underway following a submission to list FreeStyle Libre on the NDSS. You can read all about it here (where you’ll also find the link to take you to the survey).

Saturday afternoon I was flaked out on the sofa, the Winter sun shining palely through the front window. It had been a cold day and I’d been dealing with an unpleasant and tedious head cold, so I was enjoying the comfort of the house, a dog snoozing on my feet helping to keep me warm.

I was lazily scrolling through some things that I’d missed on Twitter and I stumbled across a protracted twitter exchange that began with this tweet:

Fair point. And reading David Gilbert’s Twitter feed and skimming through his blog, his commitment to patient-led healthcare is strong. He has a lot of experience fighting for the rights of healthcare users to be true partners in the system.

I was interested in the commentary that followed after Partha Kar, an NHS clinical director, quoted the tweet suggesting that things are different in the diabetes world. You can read that thread here.

I struggled with the exchange, feeling a little discomfort when every point made by the original poster was almost dismissed with a ‘but we are doing better’ comment, which completely and utterly missed the point.

I typed a couple of quick responses, deleting all of them. My head was foggy and I was not sure that my thoughts could be condensed in 140 characters or fewer. But I was trying to say that while I actually agree that ‘patients’ do have very limited ‘power’ and are often actively excluded from processes, that isn’t the point. For me, the discomfort was stemming from someone’s personal experiences being rejected by someone who is actually not in the same position – or rather, by someone who holds a position of responsibility in the very system being questioned.

Let’s reframe it this way. There is a gender pay gap that continues in every industry. Women are significantly under-represented as Company Board Directors, as CEOs, and in politics. Health outcomes for women are worse than they are for men. As a woman, I am conscious of the imbalance; I have fought for equality for as long as I can remember; I see the discrimination; I have experienced the discrimination firsthand.

Are there initiatives in place to try to address these gaps? Yep. Is the situation improved today as compared with 100 years ago? Perhaps. Are there men who are fighting for the rights of women? Of course there are.

But does that mean that women who are affected by the imbalance should have their (our) concerns and experiences dismissed because some are ‘trying to make a difference’? Absolutely not.

It is the same in healthcare. Just because there are some dedicated people steadfastly working to support and deliver a more person-centred, inclusive approach with its foundations in true partnership doesn’t mean that the problems are not still there. And it certainly doesn’t mean that we should stop paying attention to those who speak up about the inequality.

If people are feeling excluded – especially people with 30 years of experience in health advocacy, a Twitter following and a blog – we need to believe people are being excluded.

Just as it is not the place for men – even men who might be unequivocally feminist in their words and actions – to tell women that we need not feel discrimination because there are people committed to levelling the playing field, it is not up to HCPs to question the experience of healthcare consumers when we say we have no power and no ability to influence.

For the record, I agree with David’s original tweet. How much power do healthcare consumers really have in shaping healthcare? How much opportunity is there to truly influence the way the system, activities and programs are designed? In fact, how much of the system, and how many of the activities and programs are co-designed?

If we look at diabetes, how many positions are dedicated specifically to people affected by diabetes on Boards, expert reference groups, working parties, organising committees (etc.)? Can you think of an example when the split between HCPs and people with diabetes was equal?

And finally, a thought on language. The word ‘patient’ was used throughout the Twitter discussion and I believe it is problematic. It’s not a word I use; I don’t refer to myself that way. The Diabetes Australia Language Positions Statement advises against the use of the word because it ‘implies the person is a passive recipient of care, rather than an active agent in his or her own self-care’.

In a discussion about people feeling they have no power, using a word that clearly diminishes the role and involvement of the central person in the healthcare equation speaks volumes. At least I think it does.

If you can, think back to when you were diagnosed with diabetes. Can you remember much of it?

I can. I can remember almost every word that the endo, diabetes educator and dietitian said to me. I can remember that, in amongst the explanations of what diabetes was all about and how it would impact on my life, there were thinly-veiled threats about what would happen if I strayed from the plan I was being given with the expectation that I would follow it. I remember the rigid ‘my-way-or-the-highway’ instructions about how life with diabetes would be.

But mostly, I remember what was missing. There was no mention about the impact of diabetes on my emotional wellbeing. No one suggested that speaking with peers – others living with diabetes – might provide me with some much need comfort or camaraderie. No one hinted that I might like to do some of my own reading and investigating to come up with my own ideas of how to best manage this chronic condition that had moved into my body, my mind, my life.

No one told me there were options or suggested that I needed to carve out my own path and then work out to navigate it best.

If only I’d had a guide to help me do that – something to give me some ideas that felt more in line with how I lived before diabetes. I wanted something that shared real-life experience about how to make diabetes fit into an already really busy life, and help me be conscious of making healthier choices, but choices that didn’t feel as though they were suffocating me.

Now I have it – albeit 19 years too late!

Adam Brown from diaTribe has written Bright Spot and Landmines which he has sub-headed ‘The Diabetes Guide I Wish Someone Had Handed Me’. 

Click on link to be taken to the first chapter.

As I read this book, I started to think about how different those early diabetes years would have been for me – the years before I found my voice, my people and an ability to work out my own way with diabetes.

I could use words such as ‘sensible’ and ‘practical’ and ‘level-headed’ to describe the advice gently doled out in Adam’s book, and they would all be accurate.

But they would be underselling the value of the book.

Adam highlights the landmines – the things we all do to take short cuts – that inevitably negatively affect our diabetes. Often we think these short cuts save us time or ‘fix’ a diabetes problem quickly, only to find that they often turn out to be time consuming and actually end up causing more problems than the original one we were trying to address.

The bright spots are suggestions on how to positively and sustainably live with diabetes. They are easy to manage, and don’t ask for a significant shift in thinking, or large financial or even time investment to make the changes.

The book is segmented into four sections: Food, Exercise, Mindset and Sleep. This makes it super easy to use as a reference book and dive into it to help target specific areas that you want to think about. I’ve read the whole book through twice now, but keep going back to the sleep section, because I realised that it is an area of my life that I really need to address now.

I honestly wish that the day I’d been diagnosed with diabetes I’d been handed this book. I wish I’d had it on my shelf all those years as a resource to refer back to in moments of burnout or no motivation, or when I needed a little push to encourage me. I wish I’d been able to tap into Adam’s wisdom on specific issues when I was struggling with being in a food rut that was affecting my glucose levels, or in a funk because my mind was not clear or focused.

I’m so glad to have it now and have already made some changes which have been very positive. It might be 19 years late to the party, but this book will be on my shelf to be pulled down very, very often.

It doesn’t matter how long you’ve had diabetes; you WILL get something out of Adam’s book. But if you or a loved one is newly diagnosed, I would recommend you stopping whatever you are doing RIGHT NOW and getting a copy. You can buy a paperback copy here, or download the PDF here, naming your own price.

If you would like to win a copy of Bright Spots and Landmines, I can hook you up! Adam generously provided me with some copies when I caught up with him recently at ADA. Just click here and tell me in 25 words or fewer why you would like to win a copy of Bright Spots and Landmines. But chop chop! You’ve only got until the end of the weekend to enter. 

As someone who is rather passionate about the words we use when we are talking about diabetes, I was framing how I would respond in my endo appointment when I finally received my pathology results yesterday. ‘Path results are not a moral compass, Renza. They give you a snapshot of data and that is information to help you inform treatment decisions moving forward. Nothing more. Nothing less. Your value as a person is not based on the numbers on the paper.’ I repeated the words rhythmically over and over and over again.

And maybe, I almost started to believe them.

I walked into the office and sat down anxiously. With a smile, she handed me sheets of paper. ‘You’ll be happy,’ she said to me. She told me my A1c as she knew that was what I would want to know first.

I flipped through the papers, the numbers starting to blur. I heard the A1c number but the rest stopped making any sense. ‘I don’t know what I’m looking at all of a sudden!’ I said to her.

Ah,’ she said. ‘Let’s start with your kidney check because I know that always worries you.’

We went through all the other results too. I was smiling and almost bursting into tears. ‘I’m so pleased,’ I said. ‘I’m so pleased with myself.’ And it’s true. I was feeling good about myself. And then I stopped taking.

Of course I was pleased; the results were all good. The numbers were in my target range. All of the worries I’d had for the last week melted away. But along with the celebration, I was starting to feel uncomfortable.

If the numbers were not where I wanted, my response would have been disappointment and, perhaps a little shame. I would not have been pleased with myself, instead chastising my lack of effort and feeling I was not enough. Yet, the effort would have been the same regardless of the numbers on the page.

Try as I might, I cannot divorce the idea that an in-target number is somehow connected to my value as a ‘good person’, which translates to an out-of-target number means I’m not. I fight this idea all the time. I write about it, I talk about it, I genuinely thought I believed it. Does the entrenched messaging we are told over and over again by some HCPs mean we actually should assess our own value as people based on numbers (a pathology check, BGL check, CGM trace, weight, blood pressure….)? Can we simply not move beyond the judgement?

I pushed away the thoughts and tried to just breathe with the relief I was feeling.

I walked out, paid the bill and walked to my car. I decided that I wanted to share the good news with Aaron, and I sent him a text with my A1c result. He responded perfectly with a gorgeous message…and then brought me Tim Tams for dessert.

And while we were munching on those Tim Tams, I said to Aaron, ‘You know, I’m really pleased with everything here. I’m pleased with my A1c, but the thing that relieved me more than anything are these five words…’ I leaned over and pointed to the paper at the five words I was referring to:


And I breathed out. Possibly for the first time in a very, very long while.

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