Healthcare Professionals

The Right Fit

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I see an endo. I arrange for my annual checkups to my eyes and feet. I see my GP when I feel unwell, and I also have regular bloodwork done.

But when it comes to the day to day management of my diabetes, I don’t really need a great deal of support.

My first diabetes educator retired shortly after I began pumping, and I hadn’t really found a replacement who was the right fit (there were a few). I do remember feeling pretty disheartened after one session where I was told that it was perfectly okay for my BGLs to be spiking to 15mmol after breakfast. When this person tried to change my basal rates because they didn’t fit the typical 50/50 split, I didn’t make contact again.

That was back in 2016. Since then, I’ve been more actively monitoring my blood sugars and forever learning new things about my diabetes. My confidence is ever growing in being able to pick up on trends and make changes to keep my BGLs where I want them to be. I’ve gradually implemented changes that have brought me to where I am with my diabetes today.

Fast forward to today, and I find myself 18 months into a new healthcare professional relationship. I wasn’t really looking for a diabetes educator 18 months ago, but I needed one if I wanted to get my hands on a t:slim. At the suggestion of my local rep, I unexpectedly met a diabetes educator who was the perfect fit.

I think what I love so much about this relationship is that it’s exactly what I need. Which isn’t a lot. My educator knows that I don’t need a lot of support in the day to day management of my diabetes. She knows that I’m pretty switched on. And most importantly, she can tease me about whether I need to grab a biscuit to treat my borderline blood sugar, and I can tease her about some of the things that I’ve come to know of before she has.

Although I was beaten last week with this insulin pump from the 1980s.

Admittedly, I don’t know this person too well, but I just had a feeling that she was someone who I could be really honest with in terms of what I’m doing with my diabetes. Diabatteried Dexcom transmitter, for instance.

I would never expect a healthcare professional to hold my hand as I do something that’s not textbook or ‘off label’ with my diabetes. But during our session last week, she was completely supportive of exactly where my head was at.

“I need to know, because I need to be able to support you.”

Hearing those parting words as we finished our session last week, I was convinced that she’d been listening to every single comment I’d ever made around why language matters so much when we’re talking about and to people with diabetes.

Under the Microscope

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“Have I seen you before?”

“No, I don’t think so. I definitely saw someone else the last time I was here.” But he definitely felt somewhat familiar as I walked into the exam room and took a seat in the chair.

“So, Frank, tell me your story.”

“Well, I have type 1 diabetes,” I blurted out. “So I’m here for my annual eye exam.”

I can’t exactly remember where the conversation went from here, but he definitely stressed the importance of eye checks and diabetes and commended me for coming in.

“Are you well controlled?”

I chuckled. “As best as I can.”

He asked me what my hba1c was, and I told him.

“How many units of insulin are you taking per day?”

“Around 35 units.”

“Lantus? Or Novorapid?”

“I use an insulin pump. So just rapid acting.”

He seemed somewhat surprised to see someone with a pump, even though he clearly knew what they were. As he asked me how long I’d owned it and how I found it, it was clear he seemed to think that they make diabetes far easier to ‘control.’

He placed the dilating drops into my eyes, and handed me a tissue. “If I don’t make you cry, I haven’t done my job correctly!” He joked.

He brought up the eye scans from my pre-appointment screenings, and explained that diabetes is of particular concern to the smaller blood vessels in the body, in places such as the eyes and feet. He showed me a scan of my eyeballs, and identified a tiny haemorrhage from one of the blood vessels on my eye. There was another one on the other eye.

I took a deep breath, but as he went on it didn’t seem to be anything of concern. He showed me another image of a straight line, interrupted by black spots where my retina was.

He had me peer into the microscope, and shined that bright line of light into the back of my eyes, directing me to look left, right, up and down.

“I’m really happy with these eyes. These are a really good set of eyes.”

I sat back in the chair, and we talked a bit more about diabetes. He expressed that there are so many tools out there today that give people with diabetes a really good chance to manage their condition well. He also remarked that GPs don’t know a lot about diabetes.

I concurred, telling him that a lot of people aren’t being linked into the support that they need. I told him that I was living in the dark for the first couple of years, and wasn’t all that engaged in my care until I linked into knowledge and peer support online.

“Oh – and hba1c isn’t the gold standard, either,” I blurted out. “I could have a hba1c of 6 that was full of highs and lows.”

He expressed that there’s a lot of unnecessary doom and gloom in diabetes. I was happy to talk about some of my past involvements with Diabetes Australia, and how much more input I am noticing from people with diabetes. That the messaging is striking more of a balance between the seriousness and not scaring people off of a cliff. But that other orgs are still catching up.

“Is there anything else?”

“What’s your connection to diabetes? You sound like you must have some kind of interest or experience with it.”

“Diabetes runs in my family. So far I seem to be the exception, touch wood.”

He beat me to my next question, asking me if there was someone who he could send a report to. I gave him the name of my endo, and then asked him for his card.

I don’t think I’ve ever had someone explain my eye scans so carefully to me. He didn’t know everything there was to know about diabetes, but then again who does? He approached it with the seriousness it deserved, but he was also a fellow human being with whom I could have a conversation with.

He ‘gets’ it. I knew that I would make sure to request him when I return for my next screening in 12 months time.

“So, is that – haemorrhage something that gets worse?”

“They come and go. Sometimes they’re triggered by things like sneezing or coughing. If I scanned your eyes in a day or two, they’d probably be gone.”

Why I’m Opting Out of a My Health Record

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Back in July, as I was no doubt scrolling through Twitter, news broke of the commencement of the opt our period for My Health Record. I did feel a little standoffish upon learning that I would have a My Health Record automatically created for me in November without my permission. Naturally, I was leaning toward opting out of it.

I guess a My Health Record is like a digital version of the charts that my doctor and Diabetes Clinic keep on me. The idea of the digital My Health Record is that this information would be accessible to other healthcare professionals or places of care that I may choose to visit now or in future. I hear that I would still have access to this information, and control who I choose to share it with.

I guess, in theory, it’s not a bad idea.

Every new healthcare professional that I see would have all of my information available to review prior to a pending appointment. This would mean that they would be better prepared upon my arrival, and we would be able to make better use of the very limited time that we have together.

I wouldn’t need to complete forms while I am seated in the waiting room, asking the same questions over and over again.

I wouldn’t need to explain that I have type 1 diabetes, or have to endure the looks of confusion on my healthcare professional’s face, as though I’ve just complicated our whole appointment by flagging my health condition.

I wouldn’t have to respond to thoughtless questions about how ‘controlled’ my diabetes is, because my healthcare professional would be able to see a summary of my ‘compliance’ by attending diabetes checkups. Nor would I need to reframe my healthcare professional’s view that diabetes is something I continuously ‘manage’ rather than something that I am able to permanently ‘control’ (or not control!).

There would be far less errors in care or courses of treatment given, thanks to all of this additional information available prior. The quality of the care I receive would be richer, and I would walk away feeling that my time in the company of a healthcare professional was productive.

In theory, it’s a nice idea. I only wish that I believed it.

I expect that many healthcare professionals, particularly those in public care, would be far too busy and ‘stretched thin’ to thoroughly review any additional information they have on me via a My Health Record, particularly that pertaining to my type 1 diabetes.

I expect that there would still be errors in the courses of treatment given, particularly among those who aren’t able to advocate for themselves. I’ve seen a few loved ones now sent home from hospital well before they should in order to clear a hospital bed, watched them suffer at home for a few days, only to wind up back there a couple of days later.

People who don’t have the luxury of being well connected, or able to pay for private healthcare services are often pushed onto long waiting lists or left to fend for themselves.

Earlier this year, I only just received a referral to dermatology that my endocrinologist gave me four years ago (safe to say I had completely forgotten about that one!). People newly diagnosed with diabetes often tell me that they were told to exercise and lose weight by their doctor, but aren’t being linked in with the allied healthcare professionals who can actually explain to them what that means.

Sorry to sound skeptical, but I don’t believe that a My Health Record will enrich the quality of care that I will receive.

But maybe you do. That’s great! Regardless of where you stand, it’s important that you do your homework and make a decision as to whether you would like a My Health Record automatically created for you. The official website is here, and you’ll need to opt out before November 15 if you feel it’s not for you.

I will also leave this video here. My friend Emily, who lives with type 1 diabetes, was featured in this video endorsing My Health Record.

Christmas Day, For a Person With Diabetes

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Imagine one massive room, that you could wander around at your leisure. A room that had all of the latest and greatest diabetes tools and technologies on show. A place big enough that you were free to go and chat with any of the exhibitors that you wish to approach, without having sales reps from competing companies clamouring all over you. An opportunity for you to actually hold a blood glucose meter in your hand, have a play with an insulin pump, and ask all of the questions that have been sitting on your mind for the last few months.

There might even be a few coffee bars with complimentary chocolates on the counter to help get you through such a massive day. Ideally, there might even be a few freebies such as a new blood glucose meter, a mug or a sample of glucose tablets to take home. But above all, you have the opportunity to really learn and get excited about all of the options available on the market to support you in the self management of your diabetes.

This is actually a reality for healthcare professionals, researchers and people working in the diabetes industry. I’ve been lucky enough to experience what I can only describe as Christmas Day for a person with diabetes through my attendance at the Australasian Diabetes Congress over the past two years.

Several weeks ago over a coffee with one of the players in the diabetes space, I was asked what I would like to see more of from their brand. My answer was simple. More direct to consumer initiatives like the ones that I’ve been lucky enough to be involved in as a diabetes blogger.

One good example of such initiative is Abbott’s FreeStyle Libre group set up sessions. To my knowledge, people with diabetes are invited to attend a group session with both a diabetes educator and an Abbott representative. They are provided with a complimentary FreeStyle Libre reader and sensor, and learn how to use the product during the session (depending on the place of setup, CDEs may charge for the session).

Both Diabetes Victoria and Diabetes NSW have held large diabetes expos in the past. While I don’t know a lot about the nature of these events, I believe that these are weekend events held in Convention Centres with a combination of exhibitors and information sessions.

Another personal highlight for me was the technology night designed by my fellow Young Adult Diabetes Committee members in Perth last year. The evening brought together representatives from Abbott FreeStyle, Roche, Cellnovo, AMSL and Medtronic Diabetes. There were also a selection of the Committee’s favourite diabetes accessories on sale.

Most importantly, the evening was designed by people with diabetes, for people with diabetes. There were Committee members speaking about their own personal experiences with such technology, as well as healthcare professionals explaining how the technology works. Seeing people in attendance who were only hearing about such technologies for the first time really highlighted the importance of holding events like these.

I get that there are regulations around the direct ‘marketing’ of pharmaceuticals to consumers. I have been told that the pharmaceutical players in this space are free to support any events that are initiated by third parties, but there are restrictions on events initiated in house. In fairness, I don’t want to see events where diabetes sales representatives are smothering innocent consumers who may be unable to see through the heavy spin.

However, the reality is that not enough consumers know about all of the available options on the market to manage their diabetes. Would it not be in the best interests of pharmaceuticals to be able to reach the actual users of their products in the same way that they can reach healthcare professionals?

There was a time before this blog existed where I didn’t really know a lot about diabetes and the options available. It took me five years until I moved on from the blood glucose meter that I was given on diagnosis, having learned about something more modern and better suited to my needs. There was a time where I never would have dreamed that I would be a candidate for an insulin pump, because I thought they were only for kids or people who were really struggling to manage their diabetes.

As I follow Tweets from the European EASD conference happening in Berlin this week, I am reminded of just how lightening fast these advancements in the treatment of diabetes are happening these days.

It doesn’t necessarily mean that newer or more ‘tech-ier’ will be better, but people with diabetes have a right to know and make an informed decision that best suits their needs. I try to share as much of what I learn here on my blog, not because I am in the pockets of big pharma, but because getting that information out there is a mission which I truly believe in.

I distinctly remember emphasising the importance of healthcare professionals relaying word of these new technologies back to people with diabetes throughout this year’s Congress. Equally, I know that there are many person centred healthcare professionals who will do just that.

People with diabetes have a right to know about all of the options out there.

We need more opportunities like these.

Addressing ‘Non Adherence’

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The one issue that stuck out to me after the recent Diabetes Congress is the need for a resource to better support people in the self management of diabetes in hospitals and even health care. Diabetes Australia are already leading the way with some of their position statements advocating for positive communication, with the view that people with diabetes should be supported in their chosen decisions, even if some of those decisions are ‘off label.’

But we still have a long way to go.

Last week at Twice Diabetes, Melinda wrote about a session at the Congress where she learned about a hospital practice of discharging patients for ‘non adherence’ and not responding to follow up contact.

It was a stark contrast to another session I had attended which investigated rates of response to follow up contact, in this case for diabetes screenings in rural communities. This session was absolutely non judgemental, venturing into possible reasons for patients not responding to follow up contact and a genuine desire to find better solutions.

I think what’s really sad for me is that in case studies like those presented in Melinda’s session, the voice of the person with diabetes obviously isn’t being heard. I guess I get frustrated because while I know, and have the confidence to be my own advocate, not everyone is able to. This is where we need healthcare professionals who are on our side. People who are willing to put their feet into the shoes of someone with diabetes, think about why they may be ‘non adherent’ and come up with solutions.

From where I’m sitting, outcomes like these could be greatly improved through better communication when talking about and with people with diabetes. On the surface, it might appear that we’re just being nit-picky in our choice of words when we harp on about language, but it’s about so much more than that.

So how can people who are working with people with diabetes, foster better communication among people with diabetes? Here are a few humble suggestions…

1. Create a supportive environment that invites us to share. Listen to us. Don’t judge us. From everything I’ve heard about language and diabetes, there’s one little gem that always sticks out to me. The person with diabetes may be making a decision that is very rational to them. But when we are scolded, cut short or made to feel uncomfortable those reasons are likely to go unheard. We’re more likely to go off and do it without support.

2. Uphold our name. Treat us with the utmost respect, even in our absence. While we might be ‘diabetics’ or subjects of work, we are also people with real feelings and beating hearts. Hold me in the same regard that I have for my own family when you’re talking about us around others.

3. Empathise with me. Much like you, I have a life. A family. A job. Bills to pay. A roof to keep over my head. I’m trying to do all of this while managing an extremely demanding, costly and time consuming chronic condition that I didn’t ask for.

4. Treat me as Frank, and not as Frank’s diabetes. Shake my hand. Greet me by my first name. ask me how I am. How I really am. I don’t want to feel the power trip when walking into my doctor’s office. I want to feel like I am catching up with a colleague or even leaning on the shoulder of a friend. It’s as simple as being a decent human being.

I’m not too big to admit that I too am a flawed individual, with much room for improvement. I don’t know what it’s like to be a healthcare professional, a researcher or someone working in the industry.

But I have been lucky enough to meet many amazing healthcare professionals who have a real passion for their work and for creating better outcomes for people with diabetes. What makes these people real champions of people with diabetes is that they always hold a high regard for lived experience, and are always willing to learn. That’s all that I really ask for.

I am only a person living with diabetes, who wants better outcomes for other people with diabetes who might not be as confident or as privileged as I am to obtain those outcomes.

I don’t think that is a lot to ask.