Thank you, thank you, thank you for bringing up this topic! It was just what I needed to see today. lol Will explain THAT statement at the end. :)
When I was diagnosed back in 1982, I spent 3 days in the hospital learning to give shots to an orange. I couldn't go home until I was able to give myself a shot. lol Good criteria for being ready to face type 1 at home, right? I think they figured since my husband at the time was a type-1 I would be just fine. I was given a booklet that told me what foods had what food exchange numbers and how many numbers to eat at my 3 meals and a snack. I was told to go buy me a glucometer to check blood sugars 3-4 times each day (not paid for by insurance then because I wasn't legally blind. What???) There you go and good luck! Oh, and don't eat sugar ever, ever again! lol What a mess, right? Well, I was born terrified of needles so taking my own shots or checking my own blood sugars was a NO WAY for me. My ex did all of that right up until the day I kicked him out. Now what!
I spent the next year taking insulin in between DKA episodes and passing out from fear. Literally! Drove myself and my 3 little children to the ER one night at 1300+ bg! I didn't know anything about where or how to get information without having to come up with money for books and resources from stores. I was pretty much on my own with this disease for the first 15 years. Then I became more internet saavy and learned a lot on my own. Became a little more stable financially and learned a lot on my own with books. Got new doctors and found out more resources to learn stuff on my own..... See the patter here? ....on my own!!!!
About 10 years ago i was introduced to what a CDE was and then life began changing. I was still learning most of it on my own, but I had someone feeding me resources and making sure that what I was "learning" was appropriate and correct. Now I have found I am a resource for many others and have a list of resources and places people can go to find and advocate for their own health. I have become involved in several advocate for health groups and am learning tons from those arenas. Yes, many people being diagnosed now have more resources for education than we did back in '82. BUT, most doctors have no idea what is needed or how to get their patients to those people who can help them. Most insurance companies will pay for diabetes education, but doctors don't prescribe it to their patients and/or do not have it available through their clinics or networks. Education for the newly diagnosed is STILL done poorly and well hidden in most places. Very, very discouraging! And if you are not a "newly diagnosed diabetic", getting further education is nearly impossible unless you get it from other diabetics through support groups online or face to face. I have been sent even now to get diabetic education review and ended up knowing many, many things the instructor was not aware of. Then, I think what IS available is so generalized that the idea of my body works differently than his/her body does with insulin or food is not addressed at all! So unfortunately a lot of diabetics leave their doctor's offices feeling they are doing a terrible job because they have been told they aren't doing it right or the blood sugars would be better managed. B.S.!!!! You CAN be doing everything "right" and still have bgs all over the place because your body forgot to read the textboook on how to be diabetic. lol (My life in a nutshell! hahaha)
My life dream is to create a "camp/education center" type situation where newly diagnosed and "need more help" diabetics can have a week where the education and hands-on learning is intensive and personal. Where they can learn what they need to know to LIVE with diabetes---not just avoid complications (let's scary the sh*t out of them so that they will do exactly what we want them to do) info--and actually live well with this disease. I have looked into what is currently available and unfortunately adults are pretty much out of the loop when it comes to this type of help. I would like it to be something where a couple of days can be spent with the family or support system of the diabetic so that THEY can learn also how to be supportive (not a police system) and how to deal with their own anxieties over the diagnosis or how things have been going. It should also address the mental and emotional side of dealing with this illness too. NO ONE ever addresses that! And sometimes I think THAT is harder than taking shots and eating right. In my opinion any way. So feel free to let me know what YOU think would be information worthy of including, what type of environments you might think appropriate, specialists who should be involved, anything and everything you, if given the chance today to spend a week learning about "your diabetes and how to live a terrific life with it" would like to have available. This is a project about 5-8 years out, but it IS in the works.
Diabetes education definitely still needs to be expanded and improved---but it needs to be available to more diabetics without so much financial discrimination.