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.


    1. Yes Jane. One of the CDEs I spoke to remarked to me before I’d said much that it was like two different conferences. I was so encouraged that she felt this too-there was all this great stuff about language and psychology and then you go to sessions that are so awful it does take your breath away. The same hospital had another dreadful session about inpatient care and yet another on hypo treatment that was not compliant with current hypo protocols. I am SO angry about this kicking people out of care at this particular institution though.

  1. Melinda, what a terrible thing to have to sit through! But I’m glad you were there to see and hear it and report on it so others know. Here’s hoping you won’t have to sit through any more presentations like that.

  2. I sat through that presentation too and was also concerned about discharging people based on ‘non-adherence’ or not answering their phone on 2 occasions and was waiting for the presenter to talk about alternative strategies they developed to follow up with these people to support them or find out maybe why they didn’t want to engage in the service to make improvements to the service. Then when the presenter responded to your comments I thought at first I must have misheard what they said because I was not aware you could discharge people from a service based on them being ‘rude’. I know of so many CDEs who go above and beyond to support people living with diabetes and are so dedicated to their job and I am glad to hear you came across them at the ADC.

    1. Thanks Rebecca for your comments. I believe this presentation would (and should) have been difficult for HCPs and researchers as much as the average person with diabetes.

      So many CDEs, GPs, endos go above and beyond to help people with diabetes, I’m upset on their behalf too, this presentation doesn’t reflect the reality of their daily struggles to help their patients & reflects badly on the profession as a whole.

  3. I’m in Canada. Here, if you are disabled as my husband is, your care will be neglected. There is some narrative that the patient must be able to look after himself totally. If a child is too young to do all the things that a person is required to do to look after his own blood glucose management and he is at school, then, his parent has to look after that, not school staff or itinerant nursing staff. Obviously, that puts a strain on families. Some children may be too disabled to look after the management of their type 1 diabetes totally by themselves for the rest of their lives. They will get no help from our system. This is total ableism at work. To continue with the saga of my husband: he lost his hands in a unfortunate accident in October, 1970. In May, 1978 (nearly 41 years ago) he was diagnosed with diabetes (maturity onset) and fortunately, put on insulin. First, one shot of Lente and, then, a few years later, 2 shots of Lente. and, later, 2 shots a day of NPH. Blood glucose meters came out in the mid-80s, but he was never taught, even though he saw the same endocrinologist that diagnosed him for many years, how to count carbohydrates or how to give himself an injection for meals or any of the other finer points of modern type 1 diabetes management. By the way, my husband has had hypoglycemic unawareness since diagnosis so you can imagine the HELL I lived through for 23 years. He only got told about glucagon kits about year 19 after daignosis and after many, many unconscious episodes due to very severe hypoglycemia. He had convulsions in the middle of the night. He had severe lows during the day that I and a Guardian Angel, unbeknownst to me or him, treated at work with a can of Coke.. Then, my husband started passing out at work. These hypoglycemic events that had never happened at work before caused the ER head to report to the Endocrinology team that my husband’s treatment plan needed review. Alternate site bg monitors had come out in 2001 in Canada and the U.S. and our endo had shown us one but never referred us to the diabetes management centre to be shown how to use it and how to carb count or put us on MDI. What good is a bg monitor if you don’t know how to use it? in any case, we were quickly shown modern diabetes management techniques in the later months of 2001 and got our first insulin pump in 2002. Since then, I have kept up on line with changes in management of type 1 diabetes.. I have one of the first 670 Gs in our area now. I’m sure AUTOMODE is the future. yes, nurses and doctors are doing in many cases a very poor job of teaching the disabled population and their families how to manage type 1 diabetes. The arrogance of people paid to help us is breath taking.

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