The Whole Patient


I’ll never forget the social worker who came to visit me in hospital, a few short days after my diagnosis. She asked me if I was feeling anything in particular after my diagnosis. Angry? Depressed? Wanting to talk? She even asked if Mum and Dad needed to leave the room. I had to convince her that I was feeling fine, as she didn’t seem to want to believe me.

It still frustrates me today that this was the way that these emotional issues were dealt with.

Having the social worker come in like that made me feel isolated. Her presence, and her questions that day were based on assumptions that I did not appreciate. I didn’t feel like a normal patient. It didn’t make these issues feel normal. Even if I was feeling something that day, I certainly didn’t feel comfortable discussing it in front of a stranger who thought she knew me.

What really frustrates me, is the fact that I had been surrounded by medical professionals for days in the hospital. Doctors, nurses, dieticians, specialists. Yet I can’t recall one of them asking me how I was. I don’t mean my blood glucose levels. Or the hospital food. Or why I didn’t eat my white bread sandwich before bed. I mean how I was feeling after a diagnosis with a condition that would affect me for the rest of my life.

The healthcare professionals I was surrounded by at the time were the ones I felt most comfortable around. While I certainly don’t expect them to fill the role of a counsellor or a friend, I don’t think it’s too much to ask them to look at the whole patient. To simply ask something like “how’s it all going.” To show some empathy, where necessary. To help me feel normal, and understood. Sometimes, that’s all we need. Other times, they can help us find greater support.

During last Tuesday’s OzDOC chat, there was a debate over whether patients felt that they were on the same level as a healthcare professional during consultations. I believe that this is a very individual issue, that comes down to both the patient and the healthcare professional.

Some patients contribute to feeling on the same level as a healthcare professional. They are very motivated, switched on, and not afraid to speak up or search for what they want. However we are all different, and not everyone is as vocal in nature.

This is where it is the responsibility of a healthcare professional to make the patient feel on the same level. Some healthcare professionals I have encountered certainly don’t seem to live in the real world where day to day management of diabetes is concerned. Some lack the ability to look beyond what’s written in the charts for an explanation. 

Yet other healthcare professionals are able to discuss diabetes management in a very supportive and constructive manner. They are able to motivate the patient and praise their self management behaviours. They are able to see the whole patient.

When emotional wellbeing is prioritised in my diabetes care, I feel motivated to improve on what is contained in my chart. My healthcare professional only needs to put down that chart for a moment, and take a look at the whole patient sitting in front of it.

Diabetes As An Election Pawn

The Australian government recently pledged $54 million towards subsidising Continuous Glucose Monitoring technology in children under the age of 21 if re-elected this year.

While I am happy for the children and young families who may see benefit from this technology, I also felt rather saddened that I would be left out. It was difficult to digest comments from Health Minister Sussan Ley that seemed to imply that glucose monitoring issues were only pertinent to young people.

I do sympathise with young children and their families. I’ve often acknowledged that diabetes may be more challenging in an adolescent context. However, my time in the Diabetes Online Community has taught me that everyone’s diabetes is different. People are diagnosed with type 1 at all different stages in their lives. Each person’s experiences are unique. Each person’s experiences are equally challenging.

It shouldn’t be a case of who needs it more than the other. I shouldn’t have to justify my need for a CGM over a child’s. Or a teenager’s. Or a person older than me. We shouldn’t be at war with each other, when we are all walking the same path.

I’ve been using the FreeStyle Libre for two weeks (Abbott supplied me with a reader and two sensors free of charge), which is the closest I’ll ever get to having a CGM. The data, and the insight it supplies me with is amazing. Not having to prick my sore fingers is nothing short of amazing. Yet the cost puts this technology out of reach should I wish to use it. I’m a young adult on a less than spectacular wage, and I can think of a million other things I’d rather put my money towards.

I do tip my hat to Diabetes Australia and JDRF Australia, who, among others, have lobbied tirelessly with the government in search of this outcome over the years. I might also add that Diabetes Australia’s submission to the federal government did not have an age limit. The submission was based on clinical need, including cases such as pregnant women with diabetes and those with impaired hypo awareness, among other categories.

While many saw this as a cause for celebration, I still digest it with a grain of salt. This pledge has been conveniently made ahead of a federal election in Australia, even though Australians have been lobbying for several years without a lot of progress. As with any promise that is made, it can just as easily be broken.

But it is, however, a start.

You can read all the details here, and Diabetes Australia’s media release here.

First Site Change

I had it under good authority that first site changes are a mess, and boy did I learn my lesson last Thursday morning when I did mine.

I left the old site on my stomach in place, until I was sure that the new one was a success. I opened the insertion device, unwound the cannula, unwound the paper from the adhesive, and pulled back on the inner white plastic. I squeezed on the edges of my insertion device until it “clicked” into place onto my stomach, directly above the old one.

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I pressed down to ensure the adhesive had stuck, and then pulled the insertion device up. This is what was left on my stomach.

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I could feel uncomfortable pinching underneath. My first site certainly didn’t feel like this. I looked at my site, and I knew straight away that I’d gone too far left, and too far up on my stomach. There was hardly enough body fat underneath the site to cushion it. I had to rip it out, and start all over again.

After connecting the other end of the tubing to the insulin cartridge inside my pump, I went to prime it. Insulin wasn’t coming out. I primed again. I still couldn’t see any insulin coming out.

By this point, I had been disconnected from my insulin for at least half an hour. My desk, my bed and my dresser were strewn with diabetes junk. Fucking diabetes. Fucking diabetes, I cursed out load as I searched around frantically for my workbooks. Not to mention I had the live Survivor finale on timeshift that morning, which I’d planned to be watching by this point. After finding the page that talked me through refilling and replacing an insulin cartridge, I primed again. There wasn’t a single drop of insulin coming out of the cannula.

With all avenues exhausted, I decided to give the AMSL diabetes helpline a call and see if they could help.

Guess what? You know how when you start a new insulin pen, you have to prime 10 or so units until the insulin comes out? That’s all I had to do with the pump. Hold down the prime button until insulin came out. I felt so stupid.

On the bright side, my second site change on Saturday was a piece of cake. I think I’ve got this…

FreeStyle Libre: First Observations!

With the life of my FreeStyle Libre sensor coming to an end in a few days, I thought I’d better write some observations while they are fresh in my mind.

I first put my Libre sensor on during Diabetes Exchange in Sydney (disclosures are at the bottom of this post). We were advised that the best place to wear the sensor was on the underside of the upper arm. In similar fashion to an insulin pump infusion site, the sensor came packaged in what looked like an insertion device. It simply “clicked” into place on the arm.

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I’m the kind of person who easily gets annoyed by things. I fiddle with my watch, my medic alert bracelet presses too hard on my skin, and I am always picking at scabs. So I was pleasantly surprised that I have hardly noticed the Libre sensor. So far, the sensor has held nicely on my arm. I had one bath where the sensor was submerged in water for some of the time. I’ve had showers and changed my clothes every day, where the sensor is inevitably subject to some bumps and friction. The sensor is starting to look a little grubby around the edges, though, as it heads towards the end of its life.

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Being Winter, my sensor often sits under warm clothes and I notice it less. It is likely exposed to lesser impact and outdoor activity compared to the warmer months of the year. I’m also not sure how comfortable I’d feel wearing this $95 sensor to the beach under some rough waves.

Some of the other bloggers raised the issue of the Libre not having alarms to alert them of high and low blood glucose readings, which is a very valid point. I am not particularly concerned by this. Just as with finger pricks, I check often enough to be able to catch any impending highs or lows. I’m all for something simple, and that minimises the diabetes junk that I have to carry around with me. The Libre fits the bill nicely. As with anything, more features will mean an even higher price tag.

A great deal of my Libre use has been checking my glucose levels after meals. This has given me an insight into where my levels are heading after I eat, and in evaluating the need to readjust settings and ratios on my new insulin pump. We were told that data may be less accurate than a finger prick when glucose levels are rapidly changing, so please bear this in mind around my observations. 

My Libre reader has typically run around 1-2 mmol higher than the reading on my meter. I have also noticed a more significant difference where my Libre presents a reading greater than 15mmol. I have found greater accuracy where my levels are in single digits, and where there is no active meal bolus in my system.

That being said, the Libre has been super convenient to have while I’m transitioning to the insulin pump. It’s been a huge relief on my fingers at a time where I would likely be using test strips like water. Every morning, I plug it into the computer and upload the data to Diasend. It gives me access to detailed graphs that have tracked the movement of my levels through the night, which is extremely helpful in making decisions around my overnight basal insulin rate.

I walked around without my meter and test strips while I was in Sydney quite comfortably, too. The reader was quite easy to carry around, and fitted nicely into a t-shirt or jeans pocket. It was a really convenient tool to evaluate my blood sugar levels after some big Sydney meals, and a reliable indicator of glucose trends. I would definitely consider buying a sensor next time I plan on travelling.

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After a week and a half with my sensor, I am also feeling extremely challenged not to micromanage data. It’s extremely challenging to look at those annoying trend arrows after meals and not respond to them. It’s for the same reason that I’m not particularly interested in using a Continuous Glucose Monitor (not to mention the price!). I will definitely miss the convenience and the detail of my Libre data when my sensor shuts down on Thursday, but I am also very much looking forward to a break.

You can find out more about the upcoming Australian launch of the FreeStyle Libre at freestylelibre.com.au.

Disclosure: Abbott paid for my travel and accommodation expenses to and from Sydney. I received a FreeStyle Libre reader and 2 sensors free of charge. There was no expectation that I would blog about the Libre. All opinions expressed here remain my own.

DX2 Sydney

Two weeks ago, I had the privilege of attending Abbott’s Diabetes Exchange event in Sydney (see below for disclosures). I went into this event excited about trialling the FreeStyle Libre, and meeting some of the other Australian bloggers in person. Having only communicated with PR ladies Hannah and Laura prior to the event, I was surprised to learn that there was an Australian based Abbott team. I was also pleasantly surprised that they were such a core part of our proceedings over the two days.

Peter, Bruce, Michael, Pamela and Jen were with us throughout the whole two days worth of proceedings. They each presented in front of us, but they were also very much with us in a social context, too. They dined with us on Thursday evening, they sat next to us during the formal proceedings, and they also put their cooking skills to the test with us on Friday afternoon at the Sydney Fish Market.

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Going into this event, I honestly wouldn’t have thought I’d have anything in common with these guys. They were there to sell us a product, after all. However, I had some really great conversations with most of them. Although not all of them had diabetes themselves, I could see how genuinely passionate they were in the work they did. I could see how genuinely interested they were in us. Not just about the diabetes, either. I recall speaking with Jen, in particular, for at least an hour at dinner on Thursday.

One of the highlights of the event was hearing from Udo Hoss, who talked us through the “science” of the FreeStyle Libre.

We learned about how the Libre sensors were clinically proven to produce accurate and consistent results across their whole 14 day life. I learned about the term Mean Absolute Relative Distance (MARD) from regular blood glucose checking. From memory, the MARD must be below 15% in order to be a reliable indicator of glucose levels. The Libre system achieved a MARD of 11.4% across its 14 day sensor life, making it accurate enough to make insulin dosing decisions from. For this reason, Abbott are pitching the Libre as a replacement for finger pricks.

Given that the MARD is slightly higher during the first 24 hours, I cheekily put my hand up and suggested that we should receive an extra day’s worth of sensor life to compensate. There was a lot of laughter in the room, but sadly no leeway!

There were also three conditions where we were told to confirm a Libre scan with a finger prick.

  1. When glucose levels were low.
  2. When symptoms don’t match glucose readings. (Corrected)
  3. When glucose levels are rapidly changing.

We raised the question of how we would be able to push the sensor life beyond it’s 14 days. Unfortunately they automatically shut down, as Abbott cannot guarantee their accuracy or safety beyond the 14 day life.

We were also told that the data lagged by about 6 minutes.

It’s easy to sit behind a computer and complain about something being too expensive, or something else being difficult to access. Trust me, I’m guilty of it. Yes, Abbott are a business, and like any business they are trying to sell us a product. I acknowledge how privileged I am to be able to try this product free of charge. The $95 price tag for each sensor will place it out of reach for many, I’m sure.

That being said, sitting in with the team from Abbott really gave me a greater appreciation for the whole product. I had a much greater appreciation for the whole research and development process, and not just the item that I see on the shelf at the Chemist.

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Thanks again to the team at Abbott for your great hospitality, and for having me at DX2 Sydney.

You can learn more about the Australian launch of the FreeStyle Libre at freestylelibre.com.au.

Disclosure: Abbott paid for my travel expenses to and from Sydney. I received a FreeStyle Libre reader and two sensors free of charge. There was no compensation, or expectation that I would blog about the event. All opinions expressed here are my own.