Healthcare

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.

The Healthcare Experience

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It’s Day 4 of Diabetes Blog Week, and so far I’ve managed to make my way through all of Monday and Tuesday’s posts, and comment on a fair chunk of them. Today it’s time to tackle the topic I’m most excited about. Here is today’s prompt:

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

I’m pretty grateful that I live with diabetes in Australia. I attend a diabetes clinic in a public hospital which is completely free of charge, and hooks me up with any related service I need. Private Health Insurance covers hospital care, and the cost of my brand new $9,000 insulin pump (posts to come next week). Diabetes consumables and insulin are heavily subsidised by the Australian government. All in all, I never need to worry about how I will make ends meet with diabetes here in Australia.


My biggest frustration, however, is that I feel my healthcare professionals don’t often have enough time for me. I was diagnosed as a young adult, which meant that getting a grasp on diabetes education and self management was a lot easier. I was quickly weaned off diabetes education as soon as I could manage on my own. My clinic has a long patient list and waiting times for appointments can often span months. My chart probably looks a lot better compared to most of the other patients in the clinic, which means I am pushed out of the endocrinologist’s office as quickly as possible.

But what about if I’m not happy? What if I don’t want to settle for satisfactory? What if I want to do better with my diabetes? What if I have the potential to do better?

Over the past year or so, I’ve really had to learn to stand up for myself and what I want from my healthcare team. During a time of burnout last year, I had to ring up and chase appointment cancellation slots down at the clinic. I had to do the research, attend the information evenings and tell my diabetes educator that I wanted to go onto an insulin pump. I had to make my goal clear in front of my healthcare team, one that was beyond the “satisfactory” point where I was at.

Nobody else was going to help me, even if there was a benefit to my health. There is simply no time for me in a busy diabetes clinic with a high volume of patients. It’s great that I am a “switched on” patient, but the sad reality is that not every person with diabetes is. Not every person is in a place where they are able to speak up for what they want. It can be hard just to accept and become comfortable with this condition, alone.

One person I would like to praise is my diabetes educator. I know that she is under the pump. Yesterday, she told me that she is under pressure to cut one hour education sessions down to 30 minutes. Yet she always makes herself available to me outside of appointments by both phone and e-mail.

I’m still in uncertain territory at the moment with the insulin pump. I’m testing my basal insulin rates overnight, and checking to see whether they keep my glucose levels steady or not. Being able to talk the adjustments through with Gwen over the phone and by e-mail these past few days is a big relief. I haven’t leaned on this kind of support as much in the past, but I know that I intend on doing so in the next few months.

Technology is also amazing. When I was first diagnosed six years ago, I was given a meter and a logbook. Today I have meters that log my blood sugar levels and calculate my insulin doses. I have devices like the Insulinx and the FreeStyle Libre which are computer friendly. I am using the amazing Diasend software, that allows me to upload the data from my insulin pump, glucose meter and FreeStyle Libre into one place. Gwen can instantly see the reports on the other end.

My biggest takeaway here, is to stand up for what you want. Don’t be afraid to lean on your healthcare team, but also the people around you who can encourage you to do so. Your health is so worth it.

To read other posts related to today’s prompt, click here.

“How Are You” Makes a World of Difference

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“How are you?” These are the three words which I absolutely hate to hear, but can’t seem to get away from. Almost every person who I pass during the day utters those words, and I hate it. I know they’re not doing it on purpose. I know that they’re just trying to be nice. But I never feel that question is a sincere one.

Do they really want to hear about my lousy diabetes day as we pass each other in the hallway? I think not. Is it fair for me to dump all of my problems onto them when they’re just being polite? Absolutely not. Most of the time, I give my enthusiastic-sounding “yeah, good” response and go on my way. I feel like a robot with no personality when I give the same stock standard response every day. I feel guilty for not saying “how are you” back. But I’m not going to say those words unless I really mean them. And I’m not going to give a genuine response unless the situation allows for it.

In the diabetes world, however, this couldn’t be further from the truth. In the diabetes world, I don’t feel that get asked “how are you” enough. I yearn for my doctor to ask me how I am. And I don’t mean how my diabetes management is going. I don’t mean how my blood sugar levels are. I don’t mean how my latest hba1c result stacks up from last time. And I don’t mean how was that blood test that he ordered last time I was here.

I want to be asked about how I am coping with having diabetes day in, day out. I want to be asked how I feel when I wake up in the morning ridiculously high, despite feeling that I did everything right the day before. I want to be asked how I feel when I wake up in the middle of the night sweating and shaking because I’m terrifyingly low despite all my efforts to avoid it from happening. I want to be asked how I feel when my mind is plagued with thoughts of nasty complications that could affect the quality of my life. And I want to be asked about my small diabetes victory that feels like a massive achievement.

Don’t get me wrong, I am happy with my health care professionals for the better part. And I am happy with my diabetes management, for the better part.

But when I’m in the diabetes world, hearing those three words “how are you” is enough to turn my day around for the better. And while it may seem like nothing to my doctor, hearing the words “I get it” can make a world of difference.

More how-are-you’s from healthcare professionals, please.