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.
Woah. You are lucky!
I’m glad you were able to take charge of the direction you wanted your diabetes management to head in, but as you said, plenty of other people either don’t know how to or don’t have the access to do this.
Basal testing is a drag, good luck with it! I know you’ll get there….until your Diabetes decides it doesnt like those doses anymore and you get to change it up alllll over again.
Frank I think your path has been amazing these past 6 years. I remain in awe, not just of your path but also your writing.
I referred your blog to the TUDiabetes blog page for the week of May 16, 2016.
Frank, I love your message. Advocating for yourself throughout life is integral for success. And…you will need to advocate now more than ever, as you get pumping down. Joe used to be on the Animas! I loved that pump. We are now using Omnipod.
Keep up the great work!
I totally agree that you have to be your very own biggest/strongest advocate in the healthcare world. Enjoy using your pump!
I was actually afraid to initiate the conversation about an insulin pump, because I was concerned that my health insurance wouldn’t cover it if it seemed like a patient preference. I’m not sure if that’s true. It may have gone over just fine. I was asked several times if my doctor initiated the conversation or if I did, though. (I live in the US)
It’s so great that you’ve found an educator who listens to what you need and is helping adjust to the pump. I’ve only had mine 6 months, and I’m constantly making tiny tweaks. I hope you love it!
Yes, good takeaway! Thanks for sharing your experience