Diabetes and Healthcare Professionals

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.

Championing the Consumer Voice

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I walked away from the Australasian Diabetes Congress feeling that consumers had an even bigger impact than last year.

This was my second year attending the joint Annual Scientific Meeting of the Australian Diabetes Society (ADS) and the Australian Diabetes Educators Association (ADEA). Diabetes Australia pioneered a fantastic initiative called the ‘People’s Voice,’ which brought the voices of a few bloggers and consumer advocates to the Congress.

I don’t, for a minute, ever pretend to be representing anyone other than myself at events like these. I fully accept the privilege I have, knowing that I do not even come close to representing all people out there with diabetes. I’m super proud of all of the people with diabetes in attendance who drove this narrative home to the delegates, speakers and pharmaceuticals in attendance. In particular those with gestational diabetes, those with type 2 diabetes and those who are not as engaged as we are.

On Wednesday afternoon, I was lucky enough to contribute to a session which presented case studies on ‘co designing’ diabetes services with the involvement of people with diabetes. I spoke about my involvement with Perth Diabetes Care through the Young Adult Diabetes Committee. For more of a taste of what we do, you can find our Facebook page here. Melinda Seed at Twice Diabetes also spoke about her involvement with Reality Check and the resources that she helped to develop for people with diabetes.

As I said last year, I was so humbled to be in the presence of so many people that simply wanted to learn from us. The idea of this session was to plant ‘seeds’ in the minds of delegates, and we really did delve deep into some of the issues that were prohibiting the engagement of people with diabetes. I spoke about how big of a step it was for me to come along to a gathering of people with diabetes for the first time, and also sharing how much of a ‘slow burn’ some of our work in this space can truly be.

I have personally found the Diabetes Educators to be the most supportive, open minded and willing to learn from us. They are truly the people who approached me the most during the course of the week, and hopefully they will only bring more healthcare professionals and researchers along for the ride with us. I really do apologise for our narrative that, at times, can come across as assuming that all healthcare professionals are not person centred. We really are just passionate about person centred care!

The consumer voice was also championed on Friday morning during a technology symposium. As Professor Anthony Russell presented a narrative about the administration of insulin in a hospital setting, the dialogue that followed on Twitter was more interesting.

One of the biggest issues that I have heard from other people with diabetes is the forced relinquishment of self management in a hospital setting. People with diabetes are forced to relinquish their insulin. People have had to fight for the right to hold onto their insulin pumps or CGMs. Highly capable people with diabetes are often treated as incapable of self managing a condition that they spend relentless hours managing on their own.

I really hope to see a resource developed around the rights of people with diabetes to self manage in a hospital setting. If there are two organisations that I would like to see tackle this issue, it would have to be the Australian Centre for Behavioural Research in Diabetes (ACBRD) and Diabetes Australia.

People with diabetes also slayed the Twitter conversation. In a short two years, it really does make you wonder what they ever did without us? Ashley Ng ran a Twitter masterclass with the support of ADEA, encouraging healthcare professionals to get online. Just look at these amazing stats!

I am super proud of everything that the people with diabetes in attendance achieved throughout the week. I truly feel that the consumer voice was championed, and that we have proven our worth.

This is EXACTLY why we need to be at events like these.

Disclosure: Diabetes Australia covered my registration, travel and accommodation costs to attend the Australasian Diabetes Congress. My opinions and my time, including the annual leave I took from work to attend, are my own.

Dilated.

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I took a seat at the back of the store, thankfully behind a wall which provided me with some privacy from customers shopping. I placed the tissue which I had used to dab my watery eyes into my bag. With 20 minutes to kill, I pulled out my phone. I scrolled through my feeds, watching them get blurrier with every passing minute.

The office door in front of me opened, and I was finally motioned into a dark examination room. I took a seat on the wooden beech chair, placed my chin onto the little chin rest, propelled my head forward and peered through. I watched as an image of a country road in the desert was swapped out for darkness, save for a green light.

Relax. Nice and wide. Looking at the green light.

I blinked, uncontrollably, somewhat startled by the small puff of air that entered my right eye.

One more time. Nice and wide.

I struggled to regain control over my blinking, trying to convince myself that nothing was coming into the way of my eye.

After repeating the exercise on my left eye, we got up and shifted into the Optometrist’s office.

How did you get here today?  

I drove here. I’ve just come from work.

Did you bring your sunnies?

Nope, I replied, thinking about how grey and miserable a day it was outside.

How’s your vision? Not too bright?

Fine.

Following my Optometrist’s instructions, I looked to the left, then up at the ceiling, then to my right, and then to the ground as he shone a blazing white light over each of my dilated eyes.

I sat there, feeling like a bundle of nerves, while telling myself that it was unlikely that much would have changed since my last diabetes eye check 12 months ago.

I’ve visited an Ophthalmologist at the hospital before, prior to learning that my Optometrist can do the same eye screening with far more convenience for me and completely covered through Medicare. My endo is happy with this arrangement, and I know that an Ophthalmologist is my port of call if any eye changes are detected during these appointments.

Okay, we’re done. You can sit back.

Your eyes look nice and healthy. There are no signs of any diabetic changes. We’ll see you again in another 12 months.

I shook his hand and thanked him, pleased that I could check another thing off my ‘to do’ list.

“You Have Very Poor Control.”

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“You have very poor control.”

No mention of how I was feeling after my first couple of weeks living with a demanding chronic illness that would affect me for the rest of my life.

No mention of how my family, friends, peers, work and uni were treating me in the aftermath of my diagnosis.

No mention of how I was handling the insulin injections, finger pricks, food, physical activity, hypos, hypers and stigma of living with diabetes.

After a quick flick through my diabetes logbook charting some less than ideal blood glucose levels, I walked out of my very first endocrinologist appointment eight years ago on the verge of tears. This endo had clearly spent more time with his head buried inside a textbook than he had in the real world, and I was left feeling very little empathy for what I had been going through.

Despite several weeks of learning about diabetes under the wing of a very supportive diabetes educator, it took just one ten minute consult with that endo to undo what I believed was some solid progress in managing my diabetes.

That is exactly the reason why the language we use when talking about diabetes is so damn important to me.

I’m insulted when people think that this issue is about nothing more than political correctness over the phrase ‘diabetic’ or ‘person with diabetes.’ I honestly couldn’t care less which of these words you prefer to use. What I do care about is how your choice of words, sentences, body language and attitudes could impact others.

My diabetes educator could read my face the minute I stepped out into the hallway, and knew that something wasn’t quite right.

I tried to laugh it off. I told her that I hadn’t taken too much of what that endo had said to heart.

But man, those words hurt. They still hurt today.

Being mindful of language is about more than just being polite or trying not to offend someone with your choice of words.

The language we use when talking about diabetes has the power to create reality.

You can also check out my five reasons to be mindful of language when talking about diabetes in my latest column for Diabetes Daily.

And commit Diabetes Australia’s Position Statement on Language to memory!

Hope.

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I don’t really have a great deal of faith in a cure for diabetes. I do believe that we have lost sight of curing diabetes. While technology may be exciting (case in point), every new entry onto the market merely seems to be a pathway to the next product or upgraded system in the pipeline. There does not seem to be an end goal of eliminating the need for these devices altogether and curing diabetes. Perhaps people like me are to blame for feeding this diabetes technology frenzy.

Yesterday, I had the pleasure of attending Diabetes Research Western Australia’s Exploring Diabetes Expo to hear about some of the latest and greatest diabetes research being funded in WA.

Of course, the best thing about attending events like these is connecting with new and familiar faces in the diabetes community here in Perth. I met someone who was looking for answers to better manage his type 2 diabetes. I overheard a father talking about his newly diagnosed type 1 daughter, attending to try and get on top of it. It was also great to catch up with a few familiar faces.

Being surrounded by supporters of diabetes research and people in the scientific community, I was reminded of my time at the ADS-ADEA conference last year, where the company of people with diabetes is not the norm. I really felt that some of these people could benefit from spending more time in the company of people with diabetes.

The highlight of my morning was hearing Professor Tim Jones, head of Endocrinology at Perth Children’s Hospital, speak about closed loop systems. Despite all of the advances in technology, blood glucose control hasn’t improved in the last five to ten years and only 20% of patients are meeting blood glucose targets.

My heart sank hearing Professor Jones tell the audience that reason for this is that type 1 diabetes is simply a hard condition to manage.

I have no doubt that type 1 diabetes is a difficult condition to manage. But equally, I feel that clinics are under resourced and people fall through the cracks, unable to reach their full potential. One fabulous person with diabetes in attendance lamented her frustration at having to hear about new technologies through peers, rather than her healthcare professionals. Another friend in attendance lamented that the public system has little to be desired with it’s very long waiting periods.

The morning also introduced us to some awesome Artificial Intelligence retinopathy screening, which I’m not quite sure differed too much from that of an Ophthalmologist or even an Optometry screening.

There were also sugar free cupcakes, a coffee van and a great view of Lake Monger on a glorious Winter day.

Admittedly, diabetes research is not something that I can get excited about. Not like I do with the tech. But if there is one person that gives me hope in a cure for diabetes, it is Sherl Westlund, director of Diabetes Research WA. Sherl’s passion for the research grants her organisation provides gives me a glimmer of hope that we will find a cure for diabetes, hopefully in my lifetime.

If there’s one thing that I really do need, it’s hope.