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I get annoyed when articles about diabetes get it all wrong. I would have thought that fact-checking is a pretty standard practise by journalists, but I’m finding that in many cases, this isn’t the case. Where it’s less clear is when someone is writing the facts correctly, but the overall sentiment doesn’t sit right. I guess that it is going to be up to the individual as to how they interpret the writing, but there are many occasions where most of the facts are right, but I feel it’s still all wrong.
On Sunday, the Age in Melbourne (and SMH in Sydney) ran a piece by national affairs writer Tony Wright. I generally like his writing and always try to read his pieces. So I was more than excited to see that he had written a piece about type 1 diabetes following JDRF’s Kids in the House (KITH) event at Parliament House.
I loved his introduction which set the scene of 100 kids sitting down to lunch with carbs listed; his description of the process of checking BGLs, guesstimating carb content of foods, insulin calculations and delivery was beautifully accurate. But there was some stuff in there that made me prickle. And I feel guilty and a little dirty for responding in this way. But I want to pull apart some of the comments I questioned and say how I would prefer they were reported.
Tony writes: ….daily reality for the 122,300 people in Australia diagnosed with diabetes type 1, also known as juvenile diabetes. Another six, most of them children, are diagnosed every day.
Renza says: Actually, type 1 diabetes is not also known as juvenile diabetes anymore and hasn’t been for some time. Just as it’s not known as insulin-dependent diabetes anymore. Why? Because type 1 diabetes can be diagnosed at any age. Also, we grow up! And using the term ‘juvenile’ means that people think it only affects kids and no one thinks about the support, information and healthcare needs of adults living with type 1 diabete
Tony writes:…..Type 1 really ought to have another name, for it is a more terrifying beast than the much more common diabetes type 2….
Renza says: Perhaps having different names for the condition is a good idea, although I’m far too tired to fight this battle and am sure that there are better battles to expend my energy on. However, it is perpetuating a myth by saying that type 1 is a harder condition to deal with. I don’t know about living with type 2 diabetes, but I would find it pretty terrifying if I was treated with diet or exercise or oral meds and my BGL meter gave me a reading of 22.1mmol/l and I didn’t have insulin to treat it and make me feel better . Which is my protocol as a person living with type 1 diabetes.
Playing the ‘mine-is-worse-than-yours’ game does nothing for anyone. And as Tony quoted in the previous paragraph, there are just over 120,000 with type 1 in Australia. How much attention do you think we’d get if sometimes we couldn’t ride on the coat-tails of the 900,000 people with type 2 diabetes? We’d get completely lost in an underfunded system and lose significant research dollars.
Tony writes:….Virtually all these people will come to conceal a secret: they fear going to sleep, afraid they will not wake up. Sometimes they do not.
Renza says: One person dying from a hypo from which they do not wake up is a tragedy and absolutely one too many. It is a terrifying and scary thought. But in all honesty, I wonder how many of us actually think ‘I hope I wake up in the morning’. I’ve spoken with several friends with diabetes who were diagnosed as kids and they say that this was never discussed when they were growing up. Today I see newspaper report after newspaper report with parents saying they are scared their kids will die overnight. Whilst in no way diminishing this fear, I wonder just what this constant reminder is doing for the kids. Do we want to instil such fear into them that as they lay themselves down to sleep they may not awake in the morning?
Kids in the House is a really important and valuable exercise to remind politicians about type 1 diabetes. Thrilled as we may be that Tony Abbott promised $35 million, we’ll need to see if he does in fact put his money where his far-too-big mouth is if a Coalition government is elected in 2013.
My only concern with any activity like this is that it packages up type 1 diabetes a little too neatly. It focuses solely on children and doesn’t address the support, information and education they will need as they grow older and become healthy adults; the focus is too cure-centric – of course that is the ultimate goal, but all our eggs in one basket will lead to so much disappointment.
But mostly, it allows our political leaders to say ‘we’ve done type 1 diabetes – we had KITH’. This cannot be a once a year, feel-good activity that ticks the type 1 diabetes box. The pressure needs to be maintained 12 months of the year.
With the craziness that was World Diabetes Day and its associated activities over, this morning I’m chilling out in the relative calmness of the RACV Club, Melbourne. It’s the Kellion Medal presentation and I’m about to meet people who have lived with diabetes for fifty or more years. I wrote about last year’s Kellion celebrations and thought I’d revisit the post today.
Today is my favourite day of the work year. It’s the Kellion Victory Medal award celebrations where we acknowledge people who have lived with diabetes for 50, 60 and even 70 years. Just stop for a minute and think about that. Seventy years with type 1 diabetes. Now think about what diabetes was like back in 1940: urine was boiled, needles were sharpened. Home blood glucose testing was still about forty years away, modern insulins hadn’t been considered. Insulin pumps, of course, were things of the future. read more….
Today, I’m seeing blue everywhere I look. Admittedly, that could be becuase I am wearing blue jeans, a blue shirt, a blue ring, a blue necklace and, terrifyingly, blue mascara. 
And I can’t help but notice how much blue there is in our world. Today, the Melbourne skies are a particularly bright blue which made me smile as I opened the blinds in my bedroom. Even Mother Nature is celebrating Blue Fridays and raising diabetes awareness!
My daughter’s school uniform is dark green, but today she has soft blue ribbons tying up her ponytail and a blue circle pinned to her school dress. And she’s more than ready to explain why to people. ‘It’s about diabetes awareness. It’s important people know about diabetes’, she told me earnestly. Sure is, kid.
Cherise Shockley is the founder of the Blue Fridays campaign. She’s one of those people whose passion and commitment to diabetes is incredible. And she’s an amazingly nice person as well. Read all about the campaign here.
Wearing blue on Fridays throughout November is an easy way to get people thinking about diabetes, but you need to do more than just throw on a blue scarf (oh yes – I have one of those with me, too). You need to tell people why you are wearing blue, what it means, why it’s significant to you. Post a photo on your Facebook page and tell people why you’ve put it up there. Tweet a photo with the tag #BlueFridays. Ask people at work to adopt Blue Fridays for the rest of the month. By doing these things, people will be talking about diabetes – it’s a way to get diabetes front and centre of people’s minds, for them to think about donating to diabetes causes, to think about getting themselves or a family member checked for type 2 diabetes, to think about the symptoms of diabetes.
Next week on World Diabetes Day, the world will be lighting up in blue as monuments across the globe take on a blue hue. You can read about it on the IDF website. Keep an eye out for iconic buildings in your city.
Go get your blue on! And get talking!
Today at Diabetogenic Paul Buchanan is guest blogging for me. A couple of months ago, Paul asked me to guest blog for him. You can read that here. Paul has lived with type 1 diabetes since January this year and because he’s not the type of guy to sit back and wait for things to happen, he set up the #GBDOC Twitter and Facebook pages and a website, too. A couple of months ago, Paul asked me to guest blog for him. You canead that here. I was lucky to meet Paul at the EASD European Bloggers Summit earlier this month. There were lots of girly squeals (both of us) when we met. Take it away, Paul!
Ok, so I was diagnosed in January 2012 with T1 at the age of 44 – a bit of a shocker – but then it would have been a shock at any age. And another thing, I’m a grown up! I’ve had to deal with some pretty serious things in my life so far, work, travel, relationships – I’ve got a few scars, I’ve been around the block a few times, so dealing with ‘the D’ shouldn’t be too tough, right?
I mean, I really am a lucky guy, ‘cos almost immediately I found the #doc (the Diabetes Online Community) and wow – talk about support! There isn’t a question I can’t ask, there isn’t an issue I can invent, there isn’t a problem that exists that the #doc hasn’t got an answer for. When I say “an answer” I really mean a thousand voices all crying out with advice and love and empathy!
And another thing, talk about technology! 2012 and I’m on these tiny weeny little 4mm 32 guage needles that mostly I can’t even feel going in (there is the odd ‘screamer’n’bleeder’!), I’m queuing up for a pump and will get CGM just as soon as those tight-fisted buggers at the NHS realise how much of a difference it makes in quality of life and start to fund them properly over here.
I’ve got mobile apps that help me track, well, everything really! I can email and text my Nurse Consultant (she is a goddess amongst HCPs). I’m back in training having now done my first triathlon, I’m signed up to do a 70.3 ‘half’ Ironman in 2013 and life is good!
So, yeah, bloody lucky!
Being a ‘grown up’ with a few years under my belt I don’t give a stuff if other people are offended by me testing or injecting in public, in a restaurant or in the shops! I have no issues with telling people or answering questions, probably ‘cos it gives me chance to show off how much I’ve had to learn in the last six months, and I have never had to be a child with D. I have never had to feel different, never had to be treated differently, never had to worry about ‘being just like everyone else’. To all of you who were diagnosed as children, I salute you. That you not only ‘survived’, but that you are all now a part of the #doc and so willing to help others is a testament to one of the demonstrable upsides of living with a chronic condition – you are all better people than nearly everyone I have ever met, and I am proud to be a part of the family.
Lots of Love
@T1HbA1c
Thanks, Paul! You can read more from Paul at his blog here. The #GBDOC Twitter chats take place on Thursdays at 7.00am AEDT. You should sit in – they’re a very amusing bunch!
The app mentioned above in Paul’s post is MySugr. I had a look at it when I was at the European Bloggers Summit and can’t wait for it to be launched here. It’s great to see a diabetes data tracking app that has been developed by folks who ‘get-it’. I’ll let you know once it’s available in Australia.
Back in March of this year, Austroads and the National Transport Commission released their updated Assessing Fitness to Drive; medical standards for licensing and clinical management guidelines. This document refers to commercial and private vehicle drivers, so the information is relevant to people living with diabetes that hold (or are planning to hold) a drivers’ licence.
I live in Victoria, so our licensing body – VicRoads – requires that I complete a medical review form every two years. This is done in consultation with my doctor, and the form asks about hypos, changes in eyesight and other issues that may impact on my ability to drive safely.
Because I’ve had few changes in my diabetes that have affected my driving, filling in and returning this form is a pretty straight-forward matter. As long as the completed form is returned to VicRoads by the due date, I’m given a ‘conditional licence’ and I’m good to drive for another two years.
So I was expecting that the new Assessing Fitness to Drive guidelines would not really need much consideration. The guidelines cover some important things about diabetes and driving. There’s information about hypoglycaemia and impaired hypo awareness and a rather confusing flowchart to explain the processes to getting a conditional licence.
But then, in the section titled Medical Standards for Licensing we come to section 3.3.2 Satisfactory control of diabetes which states:
When assessing whether the criteria for a conditional license are met, ‘satisfactory control’ of diabetes will generally be defined as a glycated haemoglobin (HbA1c) of less than 9.0% measured within the preceding three months, as against a general goal of less than 7.0% in people with diabetes.
Whoa! What? Does this mean that if for any reason an individual’s HbA1c is above 9%, their treating doctor may refuse to complete the review? Well, apparently yes. I have been contacted by several people with diabetes who have had their licence suspended because their treating doctor refused to fill in the review based only on their above 9.0% HbA1c.
Where is the evidence suggesting that an elevated A1c will negatively impact on driving ability? I have searched and simply cannot find anything. Some people may experience blurry vision with elevated BGLs, but that is usually short-term, and ‘fixes itself’ once BGLs lower.
I can find a lot of journal articles about the danger of driving for those experiencing impaired hypo awareness. But nothing, nada, not a thing about driving with an A1c of 9.0%.
I’d like to know where that magic number came from. How is 9.0% deemed unsatisfactory control of diabetes, but not 8.8%? It appears to be an arbitrary number value that is having considerable impact on people with diabetes holding a drivers’ licence.
Disappointingly, there was no consultation in the development of these guidelines. Yes, the diabetes chapter of the guidelines were reviewed by the Australian Diabetes Society Driving and Diabetes Working Party. There was absolutely no engagement with any Diabetes Australia body across Australia. Which meant that there was no one considering the consumer side of things. All input has come from clinicians who, at times, have little understanding of ‘real life’.
Diabetes Australia is seeking clarification of these guidelines and I’ll keep you posted with what I find out. But in the meantime, if you have been unable to get your licence renewed because of these new guidelines, let your local Diabetes Australia office know.
Have you been affected by the new Assessing Fitness to Drive regulations? I would be interested to hear from anyone who has.
Last week, I sat glued to my Twitter stream watching the tweets from two separate events that had a strong diabetes consumer (or, if you prefer, patient) presence. Firstly, there was the Roche Diabetes Summit (#RDS12) which brought together 34 diabetes bloggers from across the USA. You can read some terrific reports about the summit here and here.
Immediately following the Roche Summit was the American Association of Diabetes Educators (#AADE12) Conference. Once again, the Twittersphere was full of commentary about the different sessions, blogs were written and Facebook pages provided reviews and photos from the conference. I learnt a lot about what was going on, what new things were catching the attention of members of the diabetes online community (DOC) and I noted things that I want to speak with my endo about next time we meet.
Coming up later this month is the Australia Diabetes Educators Association/Australian Diabetes Society conference. I’m going which is pleasing on a number of levels, not the least of which is that it is on the Gold Coast which will mean some slightly warmer weather. The main reason I’m excited though, is because I will be able to ‘report back’.
How many consumer advocates will be attending the Australian conference next week? I’m guessing not too many.
You may ask why it’s important to have people with diabetes at these events. It’s a valid question. I mean, the events are for health professionals to do some professional development, some networking and find out the latest in the diabetes world. The sessions are not designed for consumers, really.
And that’s all relevant and true. But how does the information presented at these conferences then get filtered through to people living with diabetes? How do we find out about the latest and greatest, the new research, the new studies? In all honesty, how many of us have health professionals who relay this information back to us?
My endo is one of the few that actually does. We speak about conferences she’s attended and new things presented. In fact, part of my screening (read: interviewing) process when I look for health professionals is to ask what conferences they’ve attended recently and what they’ve found interesting. It gives me an idea of how up-to-date their knowledge base is. But more importantly, it gives great insight into how well they then pass on that information.
So, let me ask again: Why is it important to have people with diabetes at these events? It’s critical, because it means that the information gets passed on to us – the people living with it. Which better informs us. Which helps us make decisions about our care to improve outcomes.
There needs to be a shift in Australia. People with diabetes need to be part of the planning of conferences. If we are (or diabetes is) ‘the problem’ then we need to be part of – actually, leading – the road to the solution. I wrote about this last year, but as each year passes, and as I see more and more evidence of consumer involvement in other countries, I wonder why we seem to be so behind the times.
We need to be there in numbers and we need to be recognised as a way to get messages out. It’s a revolution in terms of the place of consumers. But our rightful place is front and centre at information sessions talking about the condition with which we live. And the time is now.
So, with this in mind and knowing that I’ll be at the ADEA conference later in the month, what is it that you want me to report back? Have a read of the program and in the comments section below let me know if there is anything you want more information about. And I’ll try to get to the sessions, tweet and blog about it.
Diabetogenic 