Hello,
I was wondering what people’s experiences have been like when they transitioned from pediatric diabetes care to adult diabetes care? Did you feel well-prepared? Ill-prepared? What was your experience?! 
I made the transition pretty poorly.
My main health care from age 14 (just a week after diagnosis) to age 20 or so was the pediatric endocrinologists at a very well known and respected university teaching hospital in my home state. The completely coordinated all my healh care visits (including opthamologist and other specialties). I felt very well served by them and got to participate in many research studies and “help out” with a lot of the pediatric support groups. This was back in the 1980’s so of course the technology was kinda primitive compared to today, but the pediatric endocrinologists were very progressive and pushing a lot of the DCCT goals including home bg monitoring and dose adjustments, well before any official DCCT results came out.
At age 20 I transitioned to the “adult endocrinology” group at the same university hospital and was underwhelmed. The standards of care were so much lower than what I was used to - they were surprised that I was doing home bg monitoring and aghast that I would be changing my own doses.
At age 22 I moved across the country for grad school and again was underwhelmed by the adult endos I got to visit. At this point I mostly fell out of the professional health care system for more than a decade and just continued what I had been taught as a kid.
Finally in my 30’s I had a real job and got to visit some doctors, and eventually settled on a really good doctor of internal medicine (not quite an endo) that I see every few months, and I got back to seeing opthamologists etc. I’ve tested the water with a few endos but haven’t found any who are a good match to me. Not that they’re bad endos, just that they don’t really have time to discuss the fine points that I want to discuss.
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I think it makes a big difference when one feels connected to the professional(s) that are helping with their diabetes care and sometimes it takes testing a few before you find one that “fits.”
I had a bad transition as well. When I was 13 or so, my parents decided that driving from Lynchburg ,VA to Charlottesville, VA (1 1/2 hours) every few months for an endocrinologist was too much of a hassle They decided to stop going to UVA and try out an endo in Lynchburg. We go to that appointment and my parents and I got yelled at for not logging (“Well, How am I supposed to help you if you aren’t even responsible enough to log?! I feel like we are just wasting our time here.”). After that appt, my parents decided that all endos were evil and I don’t need one anymore. I was forced to go to urgent care centers for all my diabetes medications, And I didn’t have any doctoral advice to get me through puberty. I just had to “wing it” and hope for the best.
7 years later, I finally had the means (A car, money, permission etc.) to make my own appts. I found an adult endo in Lynchburg and went to her. However, my insurance changed after 2 appts and that endo wasn’t covered. She immediately canceled any appointments I made and stopped giving any advice or feedback. She didn’t even give me advice on where to look for a new doctor to get my prescriptions.
Finally at the age of 22, I went off to college at UVA-Wise. I still don’t have an endo, but I get all my prescriptions from a NP near the school. It’s not an ideal situation, but it’s the best I can do at the moment. It’s worked for the past year or so and I’ll probably be stuck with this until I get a decent job and don’t have to use the ACA for insurance.
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One of my local buddies moved from near Chicago to San Diego recently and had decided to go towards an adult endo there for her 14 year-old although that may have been partly motivated by John Walsh of “Pumping Insulin” fame working at the practice they chose and seemed very pleased with the initial reports. The ped endo they approached, OTOH, was not down with them doing their own adjustments (which they’ve done for years…) and also had a 5-6 week waiting period for appointments that left them feeling less than thrilled. I think it totally depends on the practice. Other than RX’s, I don’t get much advice from docs but I am thinking that a relatively mature 14 year-old would do fine at an adult practice.
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I think it’s important that people know prior to going to their appointments what is expected of them from that particular endo… that would save wasted time of both the patients and professionals and would help build better rapport. Of course you and your family wouldn’t be too keen on rushing back to that particular endo with an experience like that.
Unfortunately, that’s why so many of us with T1D get “lost” in the system or have gaps in care.
Luckily, here in Canada, we do not have to pay for our healthcare but do pay for our prescriptions unless we have great benefits through our work places.
I was hired in the province to be a “Transition Project Coordinator” … we are trying to enhance the transition experience for youth and make it easier/less scary to transition into their adult care. It’s a brand new position- but obviously well-needed.
My transition wasn’t especially smooth- I had a lot of unanswered questions and was anxious about what to expect in the adult world. Not only was I transitioning into adult care/new team but I had just moved away from home to a new province for university and so everything at that time felt overwhelming.
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