Tag Archives: patient experience

Diabetes Blog Week Day 4- Healthcare Experience

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Diabetes Blog Week

Today’s topic: 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? 

Oh man, I don’t even know where to begin. I’ve had so many awful experiences with doctors, offices, insurance companies and pharmacies. I can’t forget about the Epic Letter of Complaint that I wrote and sent to a former endocrinology office. Or the more recent Insurance Frustrations I’ve dealt with that are all too common.

Unfortunately I have yet to have a doctor and office where I felt like I consistently received competent, respectful, helpful care. Some visits and doctors have been better than others, but on the whole, there is much room for improvement. In fact, at my last appointment, the doctor forgot to check my A1c! We’re talking lack of basic diabetes care here.

So I’d like to invite you to my imaginary endocrinology appointment, an idealistic appointment where I get the exact care and consideration that that I as a patient and person deserve (and you know, a few extra perks since this is my fantasy appointment after all).

Receptionist: Good morning Reva, you’re here to see Dr. Rainbow?  Please have a seat in the massage waiting chairs, the doctor will be with you in a just couple minutes. She is actually running ahead of schedule this morning.

Nurse: Hello Reva, come on back with me. I can take your pump, dexcom, and meters from you. We’re going to download all your numbers and information and use a software that graphs them together. Do you use any additional apps that we can also incorporate the information? Any fitness or food tracking apps? With this integration, we can get a better idea of how exercise is affecting your blood sugars and if your carb and insulin ratios are adjusted for the foods you eat and when you eat them.

Now we’re going to check your A1c right here in the office with a simple finger poke. We know how annoying it can be for you to have to go to a separate lab early in the morning before work and before your appointment to get your blood drawn to check your A1c. And then have the lab forget to send it to your doctor so it isn’t there when you arrive for your appointment. We wouldn’t want that to happen to you.

You’ll be in exam room 2. It looks like the doctor is ready for you now.

Doctor: Hi Reva. I wanted to let you know that all your prescriptions are up to date. We were contacted by your pharmacy that your insulin prescription needed a refill. So we took care of that and it should be all set when you’re ready to order more.

So, how do you feel things are going? I have your graphs up on the screen and I can see some places that we can make some small adjustments. But before we go into that, do you have any specific questions or concerns  you’d like to talk about?

Our nutritionist is in the office today if you’d like to meet with her after we finish. Now let’s take a look at your graphs. Your A1c is looking good, good work on improving it since our last visit.

I also wanted to see if you’d be open to talking about or trying different brands of insulin or other medications that have been approved for use with type 1 diabetics to see if we can get your numbers under tighter control. What I would hate to have happen is to not talk about other options that exist, since treatment of type 1 diabetes has progressed over the years. We pride ourselves at this office with keeping up to date with the latest research, technologies, and treatment options. You deserve the best care that we can provide and we will work together to make sure you get it and reach the goals that we’ve worked together to set.

Is there anything else that you’d like to cover that I may have missed today? I want to make sure that you feel like you got the most out of this appointment and feel comfortable with your changes and next steps. Great.

Well, I look forward to seeing you in 3 months. If you have any questions over the next few months, please don’t hesitate to call, email me, or use the patient portal to communicate and I will personally respond within 24 hours. I would hate for you to have to make multiple calls and wait days to get a simple answer from me.

Have a good rest of your day and keep up the good work!

And scene.

Diabetes Blog Week Day 3- Language

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Diabetes Blog Week

Today’s topic:  Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples?

 

“You’re not diabetic. You have diabetes.” This is what my mom used to say to me back when I was first diagnosed. I was 12 years old. Honestly at that time, that distinction wasn’t that important to me, or maybe I just didn’t understand the difference. Today, I use the phrases interchangeably, although I get why my mom made the distinction. She didn’t want me to define myself by my diabetes. It was something that I had, not who I was. But while I don’t feel limited by my diabetes, it is a big part of who I am however I say it.

That was the first time I really thought about the nuanced language we use to talk about diabetes. But it wasn’t the last.

It was a few years ago. I was at my endocrinologist’s office for my appointment. My doctor had left the room briefly for something and my chart was open in front of me. I peeked over to see what was on the screen and I saw it: “diabetes mellitus type 1, uncontrolled“.

Uncontrolled?! Who, me?? The person who tries every day to manage my diabetes? The person who is constantly carb counting, correcting highs, and treating lows? The person who is always thinking about diabetes is uncontrolled?! What?!

It was such a slap in the face to see those words on the screen. I was sad and angry and confused. I felt like I had been incorrectly labeled…and judged. I felt like I wanted to write a paragraph explanation next to that word for whoever might read it. Why couldn’t it say something like, “Engaged patient, making progress, but room for improvement”? I know now that what I saw was part of the ICD-9 codes for billing purposes. And yes, at the time my A1c may have been higher that I’d like. But the fact that my struggles and effort of living a normal life with such a challenging chronic disease had been reduced to that single word was demoralizing.

I’ve since checked the codes that my doctor used, and I haven’t seen uncontrolled used again. But I’ve never been so angered and hurt by a word used to describe me and my diabetes. Even though I wasn’t necessarily meant to see what was written and it wasn’t a word that my doctor ever used directly with me, it demonstrated the power a single word can have and how important it is to be cognizant of the language we use when speaking about and describing diabetes. You never quite know the effect it may have.

2015 Diabetes Blog Week Day 4- Changes

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Diabetes Blog Week

When I think about diabetes and what I’d like to see changed, one word comes to mind. Well maybe 2, a cure would be a nice change. But the word I’d like to focus on is integration.

Integration. I could yell it from the rooftops. Integration would make diabetes so much easier to manage. It would make communication so much more effective. It would make our lives in general a little less burdensome. 

What exactly am I talking about?

I want diabetes devices talking to other diabetes devices. I want my pump, my meter, and my CGM to all communicate constantly. And while I know this is unrealistic, I wish that this communication could happen across companies so that my dexcom CGM could talk to my Medtronic pump or a Bayer meter could talk to an animas pump. I want numbers and data flowing freely from one to the other, whether it’s then used in a calculation, helping to inform a decision, or just being stored for later retrieval.

I want diabetes devices talking to non diabetes devices. I want my CGM numbers and my pump talking with my phone, presenting my data (carbs, boluses, blood sugars) in an easy to read and accessible manner in an app. I want their data showing up on a graph on my computer or tablet. I want other apps that I’m using to integrate in a platform with my diabetes data, whether it’s food tracking that I do or exercise tracking. How great would it be for one app that would have my carb and bolus information from my pump, graphed against my blood sugars that are collecting from my meter and CGM, informed by my Fitbit tracker active minutes and steps, and integrated with the food that I tracked during the day in My Fitness Pal?! Think about how much easier it would be to see a trends and potential causes for highs and lows. Based on the food you ate here, it looks like you gave too much insulin and that’s why you dropped low here.

I want ALL of these devices talking to my doctor. I want to be able to walk into my endocrinologist’s office or even my primary care physician, or eye doctor, or really any doctor’s office and have all of this information available to them. I want the information from all of my devices to be consolidated into a format that is integrated right into my medical record. Then when I go to the endo, they aren’t making suggestions based off of just my CGM, they are looking at the complete picture with little burden to me since all of this uploading, syncing, and integration happens automatically. 

I’m hopeful that these changes are coming soon, that this is the future of diabetes self-care. Integration will be a requirement, not just a nice feature. 


This post is part of the 2015 Diabetes Blog Week. Today’s topic: Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you? You can read more posts on this topic here. 

The Patient Experience

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I work for a global healthcare leader. A couple weeks ago we had our company conference. While listening to the various speakers within the different business segments of the company, one theme became very prevalent. Leaders in pharmaceuticals, medical devices, and consumer healthcare, all kept emphasizing the same topic: the patient experience. Speeches were littered with phrases like, “patient-centered”, the “patient journey”, “putting the patient first”. As a public health professional and as a chronic disease patient myself, I was happy to see the clear focus shifting towards the patient.

But then I stopped to think about what this really means. As a type 1 diabetes patient, what does patient-centered care really look like?

To start, I can tell you what it does not look like. A few days ago, I received this letter from my health insurance company. At the top of the letter it read, “Talk to your doctor about this important issue. It may improve your health.” Intrigued, I kept reading. The letter explained that they had basically reviewed my health records and wanted to bring a potential health problem to my attention so that I may speak to my doctor about it. The health topic was on the back of the letter. Since my various doctors have already tested and reviewed my blood work, I was curious what health issue they may have missed. I turned over the letter.

The first line on the back said, “Our data shows that you may have diabetes.” The paragraph went on to explain the importance of checking for protein in the urine as a sign of kidney damage if you have diabetes. It’s not the letter itself that annoys me. I actually think it’s great that the health insurance company is sending reminders or health information to patients to bring up with their doctor. It’s the fact that the first line says, that I may have diabetes. Guess what? I do. And I have for the past 14 years. Honestly I find this letter off-putting and probably has the opposite effect than intended. I expect that my health insurance would know that I have diabetes, they see the diagnosis codes for all my doctor’s appointments, they aren’t making a leap to say that I have it. Telling me that I may have diabetes basically says that you don’t know me at all. It’s the opposite of patient-centered. It’s communicating that I’m just another medical record that a computer scanned and looked for key words or results to send a form letter.

If they had just changed the top line, I would have reacted completely different to the letter. They should have instead said, “Reva, since you have type 1 diabetes, here is some information that you may want to bring up with your doctor at your next visit.” This would have instilled confidence that my health insurance company actually knows my health condition, it would have felt more personal, and I would have reacted overall more positively to the actual information rather than getting caught up in the first line.

My “patient experience” doesn’t just happen in my endocrinologist’s office 4 times a year, it’s tied up in everything that is communicated to me and that I do day-to-day. It’s in letters like this one. It’s in all the moments between doctor’s appointments. It’s in the way that the doctor speaks to me and even in their particular word choices when talking about my diabetes. It’s in the waiting room or exam room when I’m waiting 30 minutes to talk to the doctor for less than 15. It’s in my conversations with customer service about my pump or CGM. It’s in my multiple phone calls with my mail order pharmacy when they screw up my insulin prescription or the countless inconveniences of getting my a1c test done. My patient experience involves the lack of integration and communication between doctors and health care systems and even medical devices.

I applaud the shift and emphasis on the patient experience. It’s about time. When a patient truly feels at the center of their care, that their time and efforts are acknowledged and respected, when their obstacles are recognized and addressed, I think there is huge potential for helping patients live longer and healthier lives. I’m glad to see that we’ve taken the first steps of a long, but necessary journey.

The Epic Letter of Complaint

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I’m not one to typically complain. I rarely send back meals or make a scene about the poor service I receive. I don’t leave complaint cards or online reviews, even when sometimes I should. I don’t like confrontation and I lack assertiveness. These are things I know about myself and am working on changing. And when I do decide to stand up for myself and make a phone call about poor service, I often get so distraught that the tears start flowing, completely undermining my efforts.

This year has been a true test of my patience and my tolerance for poor treatment. Between my endocrinology office and online mail pharmacy, I have spent countless hours on the phone or waiting to get the care and medicines that I need.

When the first incident happened, I was upset, but I let it go. It was the first time something had happened in the past 8 years so I didn’t make a big deal. When the second incident happened, I was perturbed and frustrated. I knew what was happening and the way that I was being treated was wrong. I made a complaint, but I still didn’t feel that my situation was being properly recognized and dealt with. I started thinking about switching doctors, but I still stayed. When the third incident happened, enough was enough. I was mad. Something had to be done.

I wrote this letter (email) back in June. I sent it yesterday. Why did I wait so long? Partially because I didn’t want to burn any bridges until I was sure that I wouldn’t be coming back, until I had secured a new doctor that I liked. Since this has now been accomplished, I was ready.

Why a letter? As I mentioned early, it’s often hard for me to get everything I need to say out before the tears take over. I wanted to be taken seriously, I wanted to be sure that I said everything I wanted to say. And while emotion isn’t bad, I didn’t want it to get in the way so I articulated my experiences in writing.

What was I hoping to accomplish by sending the letter? Honestly, I just wanted the office to know what kind of errors were being made and the kind of treatment the office was providing so hopefully no one else would have to go through what I went through. Yes I wanted an apology and my feelings to be validated, but more importantly, I want to be sure that other patients are well cared for and don’t slip through the cracks the way I did.

So I sent this letter. I know it’s long, but hey, a lot of shit happened that I wanted to tell them about.

Dear Mr. X*,
I have been a type 1 diabetes patient in your office for the past 8 years.
I have been on an insulin pump this entire time.
Several recent medical error events in your office have made me frustrated and worried about the care that I have been receiving.
Recently, while attempting to refill my Humalog prescription I was asked by my mail order pharmacy to call them and verify the prescription that they had received from Dr. Y. This prescription was for 27 vials of insulin, and the instructions were for me to inject 100u three times a day. I usually only require 9 vials for the 3 months.
1.       As I stated earlier, I have been on an insulin pump for the past 12 years, nowhere in my record should it be recorded that I inject insulin
2.       This amount of insulin would probably kill me
3.       I once again needed to call your office and have this corrected with my mail pharmacy so that my necessary prescription could be filled before I ran out of insulin.
When I called the endocrinology office to get the prescription corrected, I talked to a nurse who figured out where the mistake was. I told her that I needed the correct amount sent to the mail pharmacy and she assured me that she was doing this electronically as we spoke on the phone. The next day I still had not received any notification from the mail pharmacy saying that it was received, so once again I called back the office to inquire as to what happened. After checking, it was determined that the prescription was supposedly sent to a different pharmacy and not the mail pharmacy,  although I had asked multiple times over multiple communications for this insurance company mandated change.
Frustrated that this was again not what I had requested, I made sure the nurse sent it to the correct pharmacy. I then called the other pharmacy to let them know that the prescription was incorrectly called in, that I would not be picking it up, and they informed me that they never received a prescription for insulin!
This makes me question both the medical record software and whether your office ever called it in to begin with.
I was forced to once again call the endocrinology office to verify that everything was correct since I was starting to run out of insulin, and was able to get this confirmation.
It is unacceptable that this process took four phone calls to get the correct prescription to the correct pharmacy over multiple days.  As you know, insulin is essential to my health, with fatal consequences if I run out.
And this is not the first time that the lack of care from this office has occurred. Earlier this year, I drove over 40 miles taking off work, waited 90 minutes for an appointment only then to be told by another doctor at the practice (Dr. Y was not seeing patients during this time) that she had clinicals now and could not see me that day and that I would have to come back the next day. Although being compensated for the gas from your office was a confirmation of a problem, this did not instill in me any feeling that I was “appreciated” as a patient, rather that I was considered just another body to move around to the convenience of the doctor.
Additionally, during this past winter, it took 3 weeks and multiple phone calls to get a prescription refilled for my Dexcom sensors due to a misunderstanding in your office that I wanted a refill and not a prescription for a whole new system. During those 3 weeks, I was out of sensors, thus not able to use my Dexcom unit.
This event itself was totally unacceptable.  But coupled with the recent insulin debacle, it makes me question the safeguards (if any) present in your office.
As a patient, and healthcare consumer, this utter lack of respect  of my time, poor record keeping by your office,  and obvious lack of concern for my welling being shown by your staff is not only medically concerning but totally unacceptable.
I have a Master’s Degree in Public Health, and work in the Healthcare arena. I have a high level of health literacy, and unlike many, I am able to generally navigate the complicated and complex health care system. Many if not most of your patients do not have this ability. I hope that you institute changes to the offices policies and practices, so that no one else will have to go through the ludicrous process that I had to endure to get my life sustaining medication and diabetes sensors. This multiple event experience has been completely unacceptable.
If you would like to discuss this further, I can be reached at XXX-XXX-XXXX
Thank you,
Reva
*All identifying information has been removed from this letter

Five hours after the email was sent, I received a phone call from the administrative director who I sent this letter to. He apologized for my experiences and told me that he had shared my letter with their chief of clinical services who would be looking into it more and following up. He thanked me for detailing my complaint and asked me if there was anything that I wanted to add. He recognized that I had chosen to leave the practice, but hoped that I would consider them again in the future.

I don’t know what will come of my letter and if any changes will actually be made, but I’m proud of myself for sending it. The office needs to know what happened so it can protect its patients. I may not be the most assertive person, but I’m glad that this time I wasn’t silent. I’m glad that I spoke up for myself and made my complaints known. Hopefully my complaint can help bring positive changes to the practice and improve everyone’s experiences, even if it’s too late for me.

The Risk

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I looked down at my watch. 3:23. Twenty-three minutes past the time of my appointment to see my new endocrinologist. I had arrived at the appointment almost a half hour early, not wanting to be late to the new office. But now I had been sitting in that waiting room for close to an hour and I was starting to get antsy and frustrated.

I checked the time again. 3:27. My impatience had started to turn to anger. Part of the reason I had switched endos was to avoid excessive waits like this. I got up and went to the desk. “Hi, I’m just wondering how much longer you think the wait might be.” The woman made a phone call. “They’re about to call you back any minute.”
Sure enough I soon found myself seated in the exam room. The nurse took my blood pressure and my height and weight, but nothing else. I sat in the chair and waited. And waited. And waited.
When I first arrived at the appointment, I was excited. I was eager for a new doctor, for one that would see me as a person and a patient. Who would listen and help me. Who would take more than a couple minutes to really understand me. I had high hopes for this appointment. But as I sat in that chair, that hope was diminishing minute by minute. 3:47. I started ranting angrily in my head.
“This is so annoying and typical! I leave work early, drive 35 minutes to wait an hour to see the doctor! Not only that, no one checked my glucose, or tested my A1c, or took my meter or pump or CGM to download my numbers. What the heck is the doctor going to talk about then?! How is she going to make any meaningful recommendations?! Why am I even wasting my time here?! Now I’m going to have to find another endo and do this all again!”
I stood up, too fueled with anger to sit any longer. I paced the room as the time approached 3:56. The doctor came in. “I’m sorry to keep you waiting.” I shook her hand but didn’t reply. She should be sorry. My earlier excitement had turned to bitterness. I sat down, my arms crossed, already defensive. This isn’t how I wanted this visit to go.
But then the doctor started talking.
She started asking all the right questions. She asked about my history, about my numbers, about my obstacles. She asked about my habits, my patterns, my journey. She asked me what I wanted to work on. She asked me what my goals were. And she listened. She took notes, she analyzed, she discussed. She took my CGM and downloaded the numbers, pinpointing right away areas that we could work on, some today and some over time. As she filled out my medical record, she read her notes out loud. They were so thorough and detailed. She made sure that we talked about everything I wanted to and made sure we had a plan to follow up. When we were all done, she looked at me and said, “Welcome to this practice, we’ll take good care of you. Your goals are our goals and we’ll work together to meet them.”
It was everything I hoped the visit would be. She was everything I had hoped my doctor would be. It was night and day between this doctor and the one I’ve had the past 8 years. It even made that hour wait worth it. Besides the wait, I wasn’t thrilled about the fact that I have to go to separate lab for my A1c test or that she couldn’t download the information from my pump just my CGM. But regardless, I still consider the visit a great success.
It wasn’t easy to leave my other doctor and practice. It’s hard to leave comfort and familiarity behind. But sometimes we don’t know what better things await us if we never take the risk.