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I am very fortunate to have a job that I truly love. But it could not be described as a particularly sexy job. At least, not the regular-day-to-day-this-is-what-I-do-when-I-am-in-the-office side of things.

I worked in recruitment for a while and the constant buzz and thrill of the game was intense. We had an old-fashioned bell in the office that would be rung when we made a particularly lucrative placement. Working on commission meant that there were dollar signs in front my eyes all the time, and I measured success in thousand dollar increments. It was sexy because it was quick, constant and there were constant wins.

Now I have a job that is what I refer to as a slow burn. Things take time, advocacy efforts are often long and drawn out, and the wins are rare. But jeez are they meaningful and worthwhile when they happen! They shoot an injection of momentum right when and where we need it, and it means we very quickly acknowledge the win and then focus on the next issue.

Sometimes people don’t realise just how long things take. When the pre-election announcements about CGM subsidies were made, a number of people commented that we’d had a busy few months to make it happen. I couldn’t help but laugh. And correct them. That particular win had been over four years of hard work.

But we take the wins were we can and this week, we’ve had a win!

The revised Assessing Fitness to Drive guidelines have been released by AustRoads and the National Transport Commission, and it’s a good news story for people with diabetes.

You may recall that there were some real issues with the previous guidelines after the completely misinformed and confusing inclusion of a definition of ‘satisfactory control of diabetes’. An HbA1c of over 9% was defined as ‘unsatisfactory control. Whilst the Commission stated that the A1c value was intended as nothing more than a guide and a trigger to seek professional care, the reality is that many people with diabetes had their licences suspended with their HCPs taking the value as a cut-off point.

As Diabetes Australia consistently argued, there is no evidence to suggest that an elevated A1c makes a person with diabetes more dangerous on the roads. In fact, this focus on an elevated A1c was actually detracting from hypoglycaemia, which is something that does need to be considered.

In the new guidelines, the number has been removed which is an excellent outcome for PWDs. And added to the document is far more focus on impaired hypoglycaemia awareness and keeping safe on the roads.

This change didn’t happen because we asked nicely. In fact, it took four years – from when the last guidelines were launched and we started to hear of people with diabetes having troubles – for the change to be made.

It took a lot of advocacy: letter writing, speaking with people who had been negatively impacted, meetings and teleconferences, and revising documents.

This is what I mean when I say that my job is unsexy. All of the work that was done behind the scenes – the slow burn – is decidedly unsexy! But it has to be done to get the wins.

I’ll admit to doing a very quick victory dance when I heard about this particular win. But the celebrating didn’t last long.

Because there is so much more unsexy work to do. Until people with diabetes are no longer discriminated against; until diabetes stigma is something we only speak about in the past tense; until kids with diabetes in schools are freely given all the same opportunities as their peers who make their own insulin; until access – to drugs, technology, healthcare – is available to all, the unsexy stuff will keep happening. You probably won’t hear about it until there is good news, but the wheels keep turning and the fire keeps burning slowly.  As I said in this post here, it’s the reason I do what I do.

The new Assessing Fitness to Drive guidelines can be downloaded here.

Four years ago in Rome, I made Aaron take a photo of me with just about every old Fiat Cinquecento we saw. There are a lot of photos of me with tiny cars!

Four years ago in Rome, I made Aaron take a photo of me with just about every old Fiat Cinquecento we saw. There are a lot of photos of me with tiny cars!

Disclosure

I was a representative on the Diabetes Working Group revising the diabetes chapter of the new Guidelines. This was part of my role at Diabetes Australia.

My first car was a 1970s Fiat 128. It was bright yellow (‘limone’) and was my pride and joy. It cost me under $2,000 back in 1993 and it remains the coolest car I have ever driven.

I longingly think back to the days of driving around in a little zippy car that was bright and fun. Other Fiat drivers would toot their little horns when they saw me on the road, and I would raise my hand in a friendly wave of vintage-car solidarity.

But it was very basic. There was absolutely nothing fancy about this car. In fact, today, it would struggle to pass a road-worthy check.

I had to keep a little container of spare fuses in the glove box because the electrics were shot. When it rained, the wipers would stop working. (Useful, I know!) As water leaked through the bonnet and onto my shoes, the wiper fuse would blow after sparking dramatically. I became incredibly efficient at reaching over and into the glove box stash for a new fuse, removing the dead one from the fuse box located just under the steering wheel, and replacing it with one that would get my wipers swiping again. All while continuing to drive through the rain, squinting through the water droplets on the windscreen until the wipers sprung back into action and I could see properly again.

Oil needed to be checked daily as it would frequently leak from the engine, and I was terrified of blowing the head gasket if I let the oil tank run dry.

The speedometer read in MPH, so I had used specks of Liquid Paper to mark 60kms and 100kms in a lame endeavour to remain within the speed limit – something that I only did rarely anyway.

I developed enviable muscles in my upper arm steering the little thing because power steering hadn’t been invented when this car was built.

And, of course, it was a manual car, because automatic cars were for wimps who didn’t know how to drive. This idea was beaten into me by my cousins who taught me to drive on the winding Kew Boulevard near home with no instructions other than ‘Don’t brake around corners. And don’t go below 60KPH’. I learnt to drive with the attitude and confidence of a Roman taxi driver.

I grew up being driven around in Fiats and Lancias. Even now, my dad drives an Alfa Romeo. So does my sister. And most of my extended family. These days, when I drive up to family gatherings in my sensible German-made car, they look at me with pity, and then turn away as they continue to look at their stylish reflections in the stylish windows of their stylish Italian cars.

The kidlet has already decided that her first car will be a Fiat Cinquecento in pale blue. I think she is ashamed and embarrassed to be seen in my boring and decidedly uncool silver Merc, preferring a zippy little Italian number so she can legitimately shout obscenities at cars driving too slow on the road while waving her hands at them. (#HerMothersDaughter)

These days, I drive an automatic car that pretty much does everything for me. It alerts and alarms and warns me if there is anything likely to interfere with my driving. It reminds me when it needs servicing, and is easy as easy to drive. Everything is programmed and instinctive, and perfectly set out, in brilliant, efficient, modern and safe German order.

In fact, my car today operates much like the diabetes tech I use: the latest equipment; the most efficient. I was an early adopter of pump therapy, one of the first people to start using CGM here in Australia, and have always liked to have the newest and snazziest BGL meter in the little Marimekko purse in my handbag.

I have no sentimental feelings towards any of my tech – I’m more than happy to ditch whatever I am using as soon as something newer, faster, brighter, smarter comes along.

I can’t for a moment imagine wanting to go back to using diabetes tech from 1970 (was there any diabetes tech in the 1970s?), but the thought of my mid-seventies Fiat makes me swoon. It was also a time before diabetes. Maybe the rose coloured glasses that are firmly placed on my face when thinking about my Fiat, also reflect a time when I didn’t need technology to keep me alive.

The other day, I saw a little yellow Fiat like the first one I owned. They are pretty rare these days and I get incredibly excited when I see one. I was in my car, stopped at a set of lights, and there, in my perfectly aligned, safety-glass rear-view mirror, I saw a flash of yellow. The Fiat pulled up next to me on the passenger side of my car. There in the driver’s seat was a woman about my age. She looked over at me and I smiled.

I flashed back to being 19 years old, driving around Carlton feeling like the coolest kid ever, without a care in the world. I didn’t have to think or worry about diabetes then. I didn’t have to check my BGL before starting the engine. Or make sure I had a supply of hypo foods hidden away. I didn’t have to wonder if I was going low on a long trip and pull over and check my glucose levels to make sure I was safe to keep driving.

In fact, the only thing I had to check before I got in the car was that I looked sharp and cool. Oh and that I had enough fuses in the glovebox for the fifteen-minute drive to Uni!

22 years ago! My gorgeous little Fiat 128. And me looking like an extra from ‘Friends’ in my 1990s jeans!

It’s no secret that I have had some problems with my local licensing authority (VicRoads). It’s also no secret that I have been annoyed and rather vocal about the Austroads 2012 Assessing Fitness to Drive Guidelines – specifically, the introduction in 2012 of the ridiculous section defining ‘satisfactory control of diabetes’ as an A1c of 9% (and the ensuing problems it caused!)

Austroads and the advisory group involved in putting together the guidelines a couple of years ago claim that this value was never meant to disadvantage people with diabetes; that it was there to simply trigger further, specialist treatment. And that it was never intended as an automatic suspension of a driver’s licence.

That may have been the theory. The reality was quite different. Many people with diabetes reported that their treating doctor did in fact interpret the guidelines as meaning that a 9% or above A1c was grounds for licences to be suspended. And that is what happened.

But here is some good news. The new draft guidelines – currently open to consumer consultation, and due for release later this year, have removed the A1c value defining satisfactory control of diabetes. It’s been a long process, but thanks to a lot of advocacy by Diabetes Australia, this is an excellent result for people living with diabetes in Australia.

One of the most enjoyable things about my job is the policy work in which I am involved, and I was pleased earlier this year when I was asked to join the working group reviewing and revising the diabetes chapter in the Guidelines. (Disclaimer: this is part of my work at Diabetes Australia and I was asked to represent the organisation on the working group. Diabetes Australia has received a significant number of complaints from people with diabetes who had been negatively impacted when the 2012 Guidelines were introduced and I have been involved in this work since then.)

 The outcome of the review has been that some parts of the diabetes chapter have been completely rewritten. The advocacy efforts led by Diabetes Australia and involving the ADS and the ADEA, resulted in the removal of the 9% (arbitrary) value being eliminated. This is an outstanding outcome.

So, now it is your turn to do a little advocacy.

If you have some spare time over the next couple of days, and you feel really strongly about this issue, now is the time to get on board and participate. The point of public consultation is that people who are directly affected can have their say. If you have diabetes, you are directly affected. If you are the parent of a child with diabetes who, at some point, will want a driver’s licence, you are directly affected.

All the details of the consultation can be found here, including how you can make a submission. I urge you to comment – even if that is to simply say that you support the changes which should ensure that people with diabetes are not losing their licence because for a reason without an evidence base. And you might like to also add that you support the Guidelines’ focus on hypoglycaemia which absolutely can and does affect safe driving. Quick sticks – the consultation closes tomorrow.

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I read this piece by Mike Hoskins (mate, fellow coffee addict, all ‘round good guy) over at Diabetes Mine yesterday where he looked at the use of the word ‘diabetic’. The piece is actually from December last year, but I missed it in the excitement that was New York in December.

I don’t use it. I don’t refer to myself as ‘diabetic’ or ‘a diabetic’. I am a person with diabetes. As far as economy of language goes, it’s a pain, especially when you only have 140 characters to play with. But PWD seems to be pretty widely recognised in my circles.

Perhaps it’s been drummed into me at work, perhaps it’s political correctness gone mad. Regardless, you will not read or hear me use the word diabetic as a label for myself or others with diabetes.

Mike’s article was quite timely as last week I had a little incident that got me more than a little heated.

I was on the phone with VicRoads. This was not an enjoyable experience by any means. I was cut off four times; the four people who answered my call(s) gave me incorrect information and then, when I asked to speak with a medical review case worker, I had someone return my call who was incredibly rude, aggressive and disrespectful. She constantly interrupted me and refused to answer my questions. And gave me the wrong information.

(For context – I was trying to get some clarification as to why I was required to submit an eye exam report along with my medical review.)

‘I was wondering why I am required to submit an eye exam report,’ I explained as the reason for my call.

‘Insulin-dependent diabetics have to must submit a biennial eye exam,’  was the response.

I asked where this is stated in the Guidelines. She would not (could not?) answer this question. She just kept saying (very aggressively) ‘It is a requirement for all insulin-dependent diabetics.’

Now, I am willing to concede that I was pissed off and that if I didn’t have my back up I probably would have let things slide and been happy to continue the discussion about our differing interpretations of the Guidelines.

But I was pissed off. I was annoyed that the medical officer was being rude and patronising and not being helpful. And I was annoyed that she was giving out false information – information that if people didn’t know better could cost a lot of time and (potentially) money for no reason.

So I stopped her.

‘Excuse me,’ I said (and I promise I was being polite and not patronising). ‘Please don’t use the term diabetic. I don’t like it. I would prefer if you used person with diabetes.’

Yes, okay. I know how prissy this sounds. I know how pedantic and, quite frankly, nit-picky I was being.  I really do.

But she was being rude and she was spitting out the word as though it was something dirty – that there was something wrong with me.

Without missing a beat, she replied with ‘But you are. You are a diabetic.’ She almost yelled it at me.

The conversation didn’t get any better.

I have diabetes. I own it. I am out, loud and proud about it. But it’s my diabetes and my rules. And my rules include how people speak about me and about my diabetes. They do it with respect, they do it politely and they show courtesy. None of these things were demonstrated. The word ‘diabetic’ was being used here spitefully, and as a label that I felt diminished me.

I don’t care if people with diabetes refer to themselves as (a) diabetic. And I don’t even really mind when other people with diabetes refer to me as (a) diabetic. But it is never done with any judgement. It never pigeon holes someone. And it is never done disrespectfully.

Words matter. I say it all the time and I realise it more and more each day.  While it’s a highly personal choice as to the words we each use to describe our ‘diabetes-selves’, using language that is accepted by everyone – and doesn’t have the potential to insult – is clearly a better way.

And here it is. Again. The Diabetes Australia Language Position Statement. And yes, I sent a copy of this to VicRoads as soon as I got off the phone.

It’s Diabetes Blog Week and this is my Tuesday post which was first published at the Diabetes Australia – Vic blog.

Oh VicRoads, are you trying to destroy me? Really?

With all that has been going on with the issues surrounding the new driving and diabetes guidelines; with all the inconvenience you are causing for people who are living with diabetes each and every day – all the hoops you are making us jump through; all the bureaucracy you have built in for us to simply hold a drivers’ licence, wouldn’t it be nice that just for once you could be a little – just a little – accommodating?

And yet, when I jump through each and every hoop and call you to ask you for an extension on getting my eye review form in I am told no. An extension will not be granted because my medical review form (different to the eye review form) was one day late.

I am unsure as to why I have to submit an eye medical review – I’ve never had to do that before. My eyes have been stable for years. This was clearly documented on my medical review form.

The woman I spoke with at VicRoads told me that if they did not receive my report on time, I would be issued a letter the following day telling me my licence was suspended. However, according to her, I have a two week grace period in which I can still drive. So why not simply give me an extra week so that I can get the form in on time? I have made an appointment to see my ophthalmologist, but of course, could not get a time until the day after the report is due. (He’s away at the moment as is half of Australia ‘cause it’s – you know – Summer holidays).

My driving record speaks for itself as does my diabetes record. I know more about how safe it is for me to get behind the wheel of a car than most people. I check my BGL, I make sure I travel with food in case I go low, I wear a CGMS that alarms not only if I am low, but if my BGL is dropping too quickly so I can prevent a hypo.  

And never before have I been late with a review.

So – here’s some advice for everyone after the trials and tribulations I have dealt with in the last few months with Vic Roads:

  • Regardless of when you have an appointment with your health professional to fill in your medical review form, call VicRoads the second you receive your letter requesting a review and tell them that you need an extension. There are dozens of reasons that this may actually occur – appointment is cancelled, doctor takes extra time to send the report, you don’t make it to the post office on time etc etc.
  • If you do not get the report in by the due date, you will receive a letter from VicRoads warning you of the suspension which will take effect in two weeks. You cannot ask for an extension at this time; it’s too late. If you think you’ll need extra time, call BEFORE the due date of the original letter (usually 8 weeks from the date of the letter) and ask for the extension.
  • Remember that it takes time for the medical review team to process your review. So even if you do get it in on time, there could be a delay in you getting the ‘all clear’. Obviously, this isn’t a problem if you get it in way before the due date, but if you’re just sneaking it in on time, it could result in your licence being suspended. I actually took my last review form into VicRoads and asked to speak with someone from the medical review team and pretty much demanded that they approve it that day.
  • Off the top of your head, do you know the date your driver’s licence expires? No cheating – do you know? I had no idea and found out the hard way one morning when a police car pulled me over as I was driving to work. After they did a random number plate check and discovered my licence had expired I was fined $359. Great way to start the day!  I had absolutely no idea my licence had expired and was 100 per cent certain I had not received a reminder letter from VicRoads (actually, being paranoid every time I get a letter from them, I was more than 100 per cent sure). I went straight down to VicRoads to renew my licence and asked if they had my correct details because I had not received a reminder about my licence.  I was right – they had not issued a reminder because my licence had been suspended. Since November 2010. I nearly fainted. Long story short: apparently it was a clerical error with some smarty-pants at VicRoads indicating that I had not submitted my last review. Despite the fact that I had in my hand a letter saying it had been received and I was good to drive for two years before the next review.  As I found out, reminders are not issued if your licence is suspended. (The fine was overturned, but it took a lot of time, letter writing, and sitting on the phone for this to happen!)

Having a licence is essential for many – most – of us, and whilst a pain, I completely understand why I need to have a medical review form filled in every couple of years.

But making things difficult for us only makes us angry at the process and the inconvenience of it all. Anecdotally, I’ve heard of people who simply don’t tell the licensing authorities about their diabetes to avoid the rigmarole involved in having a conditional licence. This is far more dangerous, in my opinion and puts these people at significant risk because of insurance and legal implications.

And this brings us back to the whole driving and diabetes issue and the development of the new guidelines. How is it possible for licensing authorities to have any idea of the actual process and how it impacts on people living with the condition if we are not consulted? Had Diabetes Australia been given a seat at the table when the new guidelines were being developed, this would have been considered. Had consumer reps been invited to take part, this would have been raised as a concern. It’s not good enough. Because this isn’t a simply list of guidelines on a page of a website. This is about our lives.

 

silver 500

Obligatory photo of FIAT 500 that accompanies any driving posts. I may be a little obsessed. #dreamcar

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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.

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