Category Archives: Uncategorized

#The Lowdown2019 Hypos!

Diabetes Australia have launched a campaign about hypos, #thelowdown2019 and it’s an opportunity to increase conversation around hypos.

Thanks to technology (pump consumables for which I’ m grateful to Australian taxpayers for making them reasonably affordable) and my Private Health Insurance (through which I can get the 10k a pump costs reimbursed) my hypos are pretty mild. This wasn’t always the case though, back in the days of Protaphane and Actrapid, I had some pretty worrying hypos.

The hypos where I felt like my brain was in quicksand and there’s just no way to ingest glucose quickly enough to stop being pulled under.


My brain’s in quicksand

Diabetesphere: Language,Roses, Empowerment & Politics

Me & e-patient Dave DeBronkart!

Every so often it’s good just to take stock of what’s going on in the diabetes world (and wider health landscape) and shine a spotlight on the good. So here’s an assortment of noteworthy things, please let me know of others.

1. The Language of Complications

I’ve blogged about complications and blame , before. It’s good to see Grumps and Renza getting a piece on this-specifically the ramifications of complications and language into the British Medical journal-way to go guys!

Read it here

2.Patient Experience, Empowerment and Engagement

I’m a huge fan of Dave DeBronkhart’s, (aka epatient Dave) work in promoting the value of the internet and patient’s sharing knowledge.

Dave asks “How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?”

Check out his slide deck from #DIAEurope2019 on why the current paradigm of the “patient” is broken and what we can do about it.

3.Type 1 and Other Autoimmune Conditions

Some trivia, apparently being female and having a later age onset of type 1 diabetes (30+) makes you more likely to develop additional autoimmune diseases. I guess I”m just the exception that proves the rule, diagnosed with type 1 at the tender age of 1year and 4 months and Hashimotos (hypothyroidism) at 6 (had been severely hypothyroid for some time but paed Endo missed it.


For Aussies, it has been interesting to see both the Government and Opposition make specific commitments to type 1 diabetes in the lead up to the next election. Kudos to JDRF who I think have been the leaders, as well as the type 1 community in general who’ve stepped up to make politicians aware of type 1 and of how important this issue is to us. If you’re on social media, simple things like thanking politicians on their Fbook pages for their commitments keeps the pressure on.

5.Spare a Rose

It’s shocking that almost 100 years since a treatment was found to prevent the slow, painful death of those with type 1 diabetes, children are still dying because they can’t access this life saving medication.  Spare a Rose is a fundraising initiative, that suggests on Valentine’s Day, you donate the cost of at least one rose to Life for a Child.

Patient Engagement:More Harm than Good?

Melinda Seed writes for Twice Diabetes

Sue Robins’ has worked in paid and unpaid patient advocacy positions for sixteen years. To  see her lay out in compelling prose how utterly defeated and  pointless all that work was, is heartbreaking. It should be compulsory reading for anyone undertaking or thinking of undertaking a patient advocacy role as well as for all professionals who believe they are engaging with patients.* The links provided in Sue’s blog to some critiques of patient engagement are also very much worth reading.

Although my experience has been less extensive and my contact more sporadic than Sue’s everything she said resonated with me. It’s that feeling that despite all the promises and all the time and effort you put into something, the outcome is not what it should be for those people on the receiving end of care. In my case, this fills me with anger at the waste of time and resources-why bother consulting when you’re just going to do what you want anyway?

Many people on Twitter empathised with Sue’s post and you could feel the mutual frustration at lack of action and hurt as a result of broken promises and feeling disrespected. It was this interaction that I thought summed things up well:

I am sure that there must be examples of patient engagement leading to change-somewhere internationally? Perhaps?  So far it’s crickets on Twitter in regards to positive outcomes.

I found myself agreeing with those like Katrina who put the point eloquently:

So patients caught up in the engagement system are left feeling hurt, burnt out and disillusioned whilst precious dollars are being wasted on meetings and committees with no output to show. Is it all just a way of deflecting “negative public pressure on the decision makers”?  Are the patients being engaged just sacrificial lambs for a system that doesn’t value patient input but wants to appear as though it does?

I would love to know what you think, whether you’ve had direct involvement in patient engagement initiatives or not.

*Patient engagement here refers to healthcare organisation’s attempts to include patient representatives in the design of systems and procedures used by the organisation in delivery of care. It doesn’t refer to interactions between clinicians and patients.

The Dolores Umbridge Response

So the food police still make an appearance from time to time and you know what, in most cases they refuse to believe that you as the person with diabetes know more about your condition than they do.  So as a public service (no need to thank me) I’m offering an occasional series of food police responses.  This is one I call the Dolores Umbridge:

Do you have any special techniques you like to use to respond to those who should really keep out of other people’s affairs? Would love to hear them!

What We Really Want for Christmas!

So this is Christmas…I am generally in favour of keeping diabetes out of Christmas but there’s been a recent flurry of discussion on the inter webs about this topic. So here’s my santa list:

10.  Insulin for all

We all know people are dying because they can’t afford insulin. This is a shameful situation, 100 years after the discovery of insulin. What’s even more shameful is that people are dying in one of the most developed and richest countries in the world.  At a practical level consider a donation to Insulin For All .

9.Affordable supplies

Similar to the above, but the things we need to manage our type 1 in an optimal manner are hideously expensive. Test strips let alone CGM and flash monitoring are beyond the budget of so many. C’mon let’s people with diabetes, governments and pharma/device companies work together to help people with diabetes.

8. Access to quality, non-judgemental and supportive HC and peer support

We have to engage with healthcare to stay alive, complications screening, scripts for insulin etc etc. It would be great if the judgement and blame approach we still see in many settings was banished for good. Some Drs and DNEs need to remember to do no harm and that includes psychological harm. It should also include being committed to quality, personalised care and being able to justify clinical decisions that impact people’s health.

7.Every HCP/academic/health promotion officer involved w diabetes given #languagematters statement from DA

I can’t believe it’s been more than a decade since DA pioneered this and yet you go to conferences etc and some presenters still talk about ‘diabetics’ having poor control and being ‘non-compliant’ <grrrr>.  DA Statement here

6.Every HCP given basic training in what type 1 is and on what insulin dependent means

Now wouldn’t that be great, we wouldn’t have to stress when admitted to hospital that somebody was going to kill us and we wouldn’t have to explain the most basic of facts about type 1 (NO! we don’t grow out of it and YES we do need basal insulin even if fasting).

5.A really good virtual reality game of type 1 D

All HCPs should have to play this at least for a few months. Experience the grogginess of highs, the constant mental gymnastics, the hypos in the middle of the night and despite your very best efforts at the end of the game, you still get a long lecture that somebody with hindsight is able to produce about what you did ‘wrong’ to produce a high or a low.

4. Surgical tape

Now bear with me here, I know some of you were a little perturbed to see this on a list of suggestions for diabetes-themed Christmas gifts but I personally could use this under the Chrissy tree-think how handy it would be to tape up the mouths of annoying relatives who ask “Should you be eating that?” 

3.A personalised insulin algorithm for pizza (or other food nemesis) that is 100% accurate.

C’mon admit it, this would make you feel pretty darn smug. Impossible to achieve this every time, but it’s nice to think there might be an answer our there.

2.A lifetime, on tap supply of your hypo fix of choice

I am so sick of buying hypo fixes-I just don’t want to have to think about it anymore. Oh and ones that don’t get icky when you find them at the bottom of your handbag/in a pocket 12 months later-that’d be great thanks.

1.The Cure

Yeah, we could all see this coming!  A cure would render the rest of the list obsolete and that would be the gift of a  lifetime!

Merry Christmas.

I’d love to hear your suggestions for what you’d put on Santa’s list-diabetes related -or not if you like. Please comment below.


Make Diabetes Invisible Again

No diabetes in sight.

It’s diabetes awareness month and I have to admit I’m  too tired right now to jump on board. Not sure why really, probably a combination of a a bit of burnout and the approach of the end of a year in which I chose to work 6 days a week.  So for me I’m continuing with an approach I’ve been trialling for the last few months, making diabetes invisible. Haha anybody with type 1 knows that’s impossible, the boluses and basals, the carb counting the testing and adjusting-they won’t stop. I’m still doing all that but I’m trying to make it all less burdensome and trying to think about it less-at least for a while.

At the moment that looks like the Ypsomed pump and Libre.  I never really took to my third Medtronic pump that I got about this time last year, the 640G is big and cumbersome compared to my earlier Medtronic pumps. The 640G would always bulge out of clothing and I got sick of having to wear it clipped onto jeans pocket or having this heavy bulge in a pocket-it was just too obvious and I could feel its weight pulling on me-a metaphor for diabetes if ever there was one I was fortunate to be given the Ypsomed pump* earlier this year, I feel much more comfortable with its smaller size and lighter weight-it can be slipped into your bra without giving you a third square breast. Similarly the Libre, whilst visible during the summer months in Australia is invisible to me-I don’t feel it or see it (so long as I wear it on the back of my arm), testing is quick and clean and best of all it’s not going to beep at me to tell me that fifteen minutes ago I was high or low.

I see and talk with people who are looping, many feel that that makes diabetes less intrusive for them. I have a repaired Medtronic pump suitable for looping but at the moment I don’t want to think about setting it up, about adapting to something new again and I don’t want to wear CGM which is much bigger and obvious than the Libre. I plan to try looping next year and like most D tech innovations of which I’ve been sceptical I will no doubt find that it makes life with diabetes better rather than worse.

I like the idea of looping and the #wearenotwaiting movement, I really do, but right now I’m just wanting to make diabetes INVISIBLE.  For this diabetes awareness month I’m leaving it to my buddies in the d world who are doing a fabulous job, as always, of raising diabetes awareness and making the burdens of D apparent to the non-D community. For this year I’m lightening the load just a little-a few ounces less pump weight, a little less time online and scanning rather than pricking-it’s little enough but that’s all that I can do to ease the burden for now, and that has to be enough.

Happy diabetes month and remember to wear blue on November 14!

*Ypsomed did give me a pump to trial & have allowed me to keep it, there was no expectation or obligation that I would write about or comment on the pump.

Diabetes in Hospital #18ADC Research

Melinda Seed writes for Twice Diabetes

Diabetes care amongst hospital inpatients, as I mentioned here, was a topic of focus at the recent Australian Diabetes Congress #18ADC. I have highlighted this as an issue of concern before here and here and the anecdotes of hospitalised people with type 1 make alarming reading.

Whilst there was an overwhelming acknowledgement that there is much room for improvement in this area I remain concerned about the lack of concern around how quickly people with type 1 can suffer serious consequences of too much or too little insulin. There was no differentiation between the way that insulin-dependent, non-insulin dependent but on insulin and not on insulin ‘diabetes’ patients were being ‘managed’ in the presentations made from hospitals. Whilst the data recording systems that are reviewed by a nurse educator every 3 days (!) are great to identify type 2 patients who need a treatment review because of persistently high sugars etc. It’s too late if a type 1 is in DKA for a DNE educator to look at where their sugars were three days ago. I was struck by the lack of urgency in type 1-again I think this comes down to stigma about diabetes in general and a lack of understanding and appreciation that type 1s are walking a tightrope between severe hypoglycaemia and DKA every day-the state of “dangerous safety” that Banting referred to some time after he developed the 20th century wonder-‘drug’ insulin.

A really bright spot amongst the presentations was one by Rebecca Munt, a PHD candidate with a nursing background who also trains Diabetes Educators. Rebecca’s research was on the experience of people with type 1 whilst being an inpatient. I LOVE this way of bringing the voice of people with diabetes into the healthcare discussion.

This is what Rebecca presented as what we already know (telling and a bit alarming)

Rebecca’s research involved focus groups and interviews with t1s who’d been hospitalised in the last few years and a theory on this experience was suggested and co-designed with the research participants (that’s my very rough attempt to explain constructivist grounded theory-if I’ve got it wrong I hope somebody will tell me).

What Rebecca found was:

This really resonates with my experiences in hospital and with the many stories I’ve heard from type 1 friends and acquaintances. We are not being difficult, we have good evidence to support the fact that HCPs in hospital settings are quite ignorant about type 1 diabetes and we need to be vigilant to keep ourselves safe. We manage our diabetes 24/7, self-management should be the default situation unless we are truly mentally incapacitated.

Some years back the British Medical Journal published a great, type 1 diabetes specific article titled, What happens when you know more than your Doctor, amongst its findings:

Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field.

Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully.

This quote really sums it up for me!

PS. I was overjoyed that Rebecca’s presentation was awarded the best ADEA Abstract at the 2018 Australian Diabetes Congress #18ADC. I really hope that the HCPs who need to hear this were listening!


Melinda Seed writes for Twice Diabetes

I am still seething about a presentation at Australasian Diabetes Congress 2018, #18adc that discussed the results of a 12 month review of an “Insulin Dose Adjustment Clinic”, in a major teaching hospital in innerEastern-Sydney.

This was the least patient-centric, most egregiously substandard research methodology and ethically questionable thing I’ve seen presented. I know these are strong words but I stand by them not least because people with diabetes who attend this so-called clinic are being denied adequate care if the centre’s actions are truly the way they were presented in this talk, I have no reason to doubt what was presented but if some of the illustrious names associated with this hospital want to correct or clarify things, I’d be delighted to hear from them:

Substandard Research Methodology and Ethically Questionable.

Several times during the presentation the Registered Nurse and Credentialed Diabetes Educator making the presentation said that over a year,  7% of total referees to the clinic were discharged from our carefor non-adherence AND this was in addition to the 20% of patients who were discharged because they didn’t respond to 2 attempts at phone contact.  In total, 33% of people referred to the clinic did not complete the insulin dose adjustment clinic-if you were a business and 1/3rd of your customers didn’t return you’d be out of business/our of a job pretty quickly.

So why is this a substandard (as in it wouldn’t pass a High School research project test) research methodology? Simply because of an abject failure to define their terms.  

When asked by an audience member what the definition of non-adherence that led to discharge was, the response was cringe-worthy.  “Oh it’s a bit subjective I suppose… you can just tell”

EXCUSE ME YOU CAN JUST TELL??????????????????

How foolish of those of us questioning this presenter,  I didn’t realise that clairvoyance was a skill utilised by public servants employed as health care professionals in NSW hospitals.

This is the most outrageous insult to ‘research’, to people with diabetes and  to the many dedicated and diligent health professionals who are slaving their guts out to help people.

The look on my face to the “you can just tell” response elicited the follow-up “you don’t agree”- OH GOOD GRIEF, I said no and the response after an embarrassingly awkward pause where this professional looked bewildered that somebody would question her ability to “just know” something  was …………….”Sometimes they’re rude”


I suggest person who is a  RN CDE that you go spend half an hour in the Emergency Department of your hospital where your saintly colleagues are being regularly abused and spat upon by people in mental health and/or substance abuse crisis and learn what health care is all about.  It’s an insult to all those hard working professionals who are subjected to verbal abuse and threats and yet they soldier on because they know they have a responsibility to save lives.

How dare you deny medical treatment paid for by Australian taxpayers for reasons you cannot even define.  YOU SHOULD NOT HAVE THAT RIGHT! In fact I’d argue you’re bringing your whole profession into disrepute.

As you can tell I’m furious about this but not despairing.  The reason I’m not totally despairing is not only do I personally know many health care professionals who aren’t like this, but there were good questions from the audience of healthcare professionals who were obviously also concerned about the nature of this presentation but during the conference I had a couple of quiet chats with CDEs I hadn’t met before. They worked in public hospitals, one just on the other side of Sydney from the offending party mentioned above, the other in the ACT. They gave me hope, their compassion, their understanding of the difficulties of diabetes care both from the patient and the practitioner perspective and their horror at the lack of professionalism in discharging somebody for non-adherence showed me that despite a few bad apples (or in this case it appears an entire diabetes “unit”) kind, compassionate, and competent care is out there you just need to sort the small amount of dirt from the gold.

TSlim, YpsoMed, Cellnovo, Roche & Medtronic Choices!!

Melinda Seed

Yes, that’s right we’ve gone from  1 viable insulin pump choice to now having a choice of 5. I checked out what’s available at the Australian Diabetes Congress (#18ADC), formerly known as ADEA-ADS conference.

After the demise of the Animas Vibe, everyone’s been excited about the announcement that the Tslim is coming to Australia.  All existing Animas pumpers will be upgraded to the Tslim (as part of Animas’s contract with J&J).  I and some other bloggers were invited to a launch of the Tslim at a dinner on the first evening of the conference (AMSL provided the food and drink but there was no expectation or requirement that we comment, write about or mention their product).

The Tslim insulin pump is small and “sexy”. It has all the features of the much larger and clunkier Medtronic 640 pump BUT it’s considerably less bulky and has a touch screen.



  • 3ml reservoir (it can sill be so small because the reservoir is a pouch/bladder rather than a syringe).
  • Talks to Dexcom CGM
  • The software is automatically updatable, so tech changes don’t have to wait 4/5 years for an upgrade.
  • All bolus calculators etc builtin
  • 16 different profiles for basal and bolus rates.
  • Rechargeable battery.


As I’ve said before it’s great to have more choice and whether this is the right pump for you will depend on your lifestyle. It is quite a heavy pump despite its size and the removable metal clip that encases the pump makes it heavier. If you spend time off the grid, then the rechargeable battery is going to be limiting. For me, whose idea of camping is a hotel with a view of the mountains, not having to make late night dashes to the 7-11 to buy batteries would be a definite bonus.

Frank Sita of Type1writes  has an Animas Vibe and the Tslim is the pump of his dreams, he is so keen to start on the Tslim that we’re trying to help him out with the #TslimforFrank campaign. Please AMSL, let Frank be one of the first to get the Tslim upgrade (what else are friends for but to beg on your behalf) #TslimforFrank

I am a still a fan of the Ypsomed pump, because it’s small, lightweight and doesn’t require a load of button pushes when all I want to do is a quick bolus. I’ve reviewed the Ypsomed here.  I am looking forward to it talking to a cgm or flash device, I understand there is talk this may happen within the next few months.

Cellnovo were also at the Congress. This is another option for people who want something a bit more like a patch pump. My comments on it from last year’s D conference here .

Finally I did visit the Medtronic stand, they announced the ‘launch’ of their 670 pump system. There is a “but” though, the CGM that goes along with the 670 doesn’t have TGA approval yet, so they’ve announced a launch even thought the new pump isn’t available yet. To stop people rushing off to consider other pumps, they are offering that if you are upgrading or moving to pump therapy now, you will get a 64- PLUS 6 months worth of CGM AND they’ll upgrade you to the 670 when it becomes available.  I spoke to the reps, and a really senior business manager and they weren’t to be drawn at all about when regulatory approval might be received for the 670 CGM. Also if I were in the position of deciding whether to go with Medtronic I’d be asking for some sort of guarantee about when the upgrade will occur once TGA approval is received.



Sometimes if you hang about on social media too much, it can seem like everyone is using CGM or Libre and it’s only us Luddites who still fingerpick.  Of course the vast majority of us with type 1 D still prick our fingers. Ascension (formerly Bayer) have launched a new meter, tiny and tests assure us that it’s extremely accurate. It also has an App that you can download that gives you loads of info about trends etc.  It also allows you to have a second go at getting enough blood on the strip-this avoids the annoyance of wasting strips.

You can request a free (!) meter online.  “To request a CONTOUR®NEXT ONE meter, visit The CONTOUR®DIABETES app is now available to download from the Apple App Store (iOS) and Google Play (Android).”



A big thank-you to Diabetes Australia for inviting me to be part of #DAPeoplesVoice, DA covered my accommodation and travel expenses and arranged a media pass for the conference. Any opinions expressed about the conference are entirely mine and do not represent those of DA.  Ascencia and AMSL provided food and drink whilst showing us their products but any opinions are entirely my own and there was no expectation from either company that I would write about their product.


Diabetes Congress Day 1

So it’s been a busy time here in Adelaide. As part of #DApeoplesvoice at the Australasian Diabetes Congress #18adc I’ve been to two product launches, presented at a symposium on co-design and tweeted my heart out at a full day of sessions and it’s only the first day!

So a few of the major things from day 1:

The tslim pump has launched in Australia (more on this later) but suffice to say it has all the features but a really small size. It looks set to be very popular. I put my money on Frank Sita being one of the first to switch over!

Diabetes Australia has stepped bravely into the low carb ‘discussions’ by issuing a position statement.

After tackling low carb I guess they decided “in for a penny in for a pound” and have tackled DIY diabetes tech as well.  It’s refreshing to see that there is a patient focused approach in which the main point is that health care professionals shouldn’t abandon patients who are using this tech.

Some interesting sessions on hypos. There seems to be generalised agreement that the correlation between low a1c and severe hypos observed in the DCCT is no longer relevant. New insulins, new tech enable improved a1cs and reduced hypos.

Its a slow burn to get the voices of people with diabetes into the conversation. I think this year is a little easier than last year. The co-design symposium at which Renza, Frank and I presented got some really positive responses, thanks to Renza and Kirsty Bell for organising this.

Its been so great as always to spend time with some of the tribe.

More info including some tech updates coming soon.