** Note: This post is rather long and has several pages of documents attached to it… you’ve been warned!
I was diagnosed as a Type 1 diabetic in 1970 but did not start pumping until 2008. At the time, it seemed like there were days that insulin just wasn’t working. At the urging of my PCP, I visited an endo for the first time in nearly a decade.
If you’ve read my blog a while, you know I’m clinically depressed and had a real “Why Bother” attitude since I learned at a very young age that I was supposed to be dead 20 or 30 years ago. So getting me to see the endo was no small feat and it was accompanied by a time where I Chose not to do something extremely selfish. There were a number of factors that made me actually want to see an endo, so after a wait of 2 or 3 months, my appointment arrived.
It was the same endo that I had seen about 10 years prior and I liked her. At that time, I had and A1c of 6.8 and she told me to keep it up and see her in a year. There’s another little side story that goes along with that visit that some of my closer friends know…
Spring forward to 2008. I had rarely been testing, living alone for several years and basically had no idea WTF was going on with my diabetes. As we discussed this, that, and the other her initial goal was to get me on a pump ASAP and go from there. She sent me home with some info on the various pumps available and then something truly fantastic happened.
I found you all, learning for the first time in nearly 40 years that I really wasn’t the only one out here dealing with the issues that we all face on a daily basis. I had been forced to be so self-reliant for so long, I had no clue that I even needed peer support, let alone that it was available to me at any time, day or night.
That particular realization, that I needed peer support, was probably the tipping point that has brought me to where I am today… a lot has changed for me in the past three-and-a-half years. But back to the topic at hand.
In researching insulin pumps on the internet, of all places, I decided that yes I wanted one and had one in my hands two weeks later. Now you have to realize what this meant to me. I went from rarely testing to the rigorous testing and attention to detail that pumping requires, it was just a bit overwhelming at first… and basically turning my life over to a machine was more than a little unsettling.
So, pump in hand I head to training with my first-ever Certified Diabetes Educator (CDE). Now for the gory detail of the next 6 weeks or so, you’ll need to read the heavily Redacted Letter (it’s a 5 page PDF).
Now if you’re still here, I wrote that complaint letter because of a conversation I had with a friend who is an HCP, her point was that we have no idea how many other patients have been or will be subjected to such treatment and basically getting a retaliatory entry in their records. And she also told me who I needed to write to, complaining only to the doctor or department is pretty much a waste of time, the complaint has to reach people whose job is to make sure crap like that doesn’t happen to people like you and me. I copied the following on the letter:
- Hospital CEO
- Hospital Risk Management
- Hospital Quality Management
- Hospital Chief Nursing Officer
- Hospital Physician Relations
- Practice Manager for Endo’s Practice
- Complaint Manager for the Kansas State Board for Healing Arts
- Kansas Foundation for Medical Care
- Director of Hospital Medical Records (main addressee) and
- The Joint Commission
The Joint Commission told me they would keep it on file, but since it was a clinic and not an actual hospital department, there was nothing they could do. The State Board of Healing Arts acknowledged receiving the letter and a few weeks later told me that no regulations had been violated. Although I tend to disagree because the CDE seemed to be keeping no records on me, doing it all from meter and pump data and not considering previous conversations.
One of my few redeemable physical qualities is the ability to remember things I see (and there are somethings I wish I could unsee…), especially if I’m interested. Even more so if I write them down, my memory can be near photographic then. I was able to write such a detailed account because I always wrote down the instructions and high points of our “conversations”. Since she didn’t seem to be keeping any type of detailed records I guess she had to talk about it all from memory, maybe she has a photographic memory as well.
I spoke with a lady from the Foundation of Medical Care, who certify institutions and clinics for MedicareMedicaid. My friend had told me to copy them since an endo clinic probably has a large number of MedicareMedicaid patients. Since I wasn’t on MedicareMedicaid, she couldn’t help but would file it and was very interested in the outcome. I told her that I’d make sure she got copied on everything.
The most contact I had with the provider was with the Practice Manager at the Endo’s clinic. She was a very nice, courteous and sympathetic listener and explained to me the proper procedure for filing a complaint (They have to do that, in case you were wondering). After a few weeks, I received a Reply from the Practice Manager.
The addendum she refers to is a statement from the endo that I was never counseled to receive psychological treatment. Now if you’ve been reading a while you’re probably going “wait a minute…” and it’s true I did need some. At that time I wasn’t ready to start it on my own, but if I had been counseled to seek it… who knows?
After this, I wrote a 2nd_Complaint_Letter saying that I did not find their reply to be sufficient. I can’t seem to find any of the documentation past this point, it’s probably in storage at the moment. Basically, to continue this, I had to fill out a complaint from with the Privacy Officer of the Records Department. And wait.
A couple of months later, I received a letter and a copy of my records saying that the original patient summary sheet and the doctor’s addendum had both been redacted from my file!
That process took about 8 months. It’s important to be patient, professional and courteously assertive. While I felt the treatment I received initially by the CDE was reprehensible, the response from the institution was very professional and attentive to the issues. My experiences resulted in changes to the practice’s patient communication and record keeping protocols.
At the heart of the matter, quality institutions WANT to know when things like this happen so steps can be taken to prevent future occurrences.
I always keep this story in mind when I meet new HCPs for the first time. If you watch how they not only treat you as a patient, but also how they treat you as a person, you can sort the wheat from the chaff pretty quickly and just not waste any time with the chaff.
It was at this point that I took my first steps into advocacy and being a true e-patient.
© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com