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!
Oh boy. Insurance, healthcare, insurance companies, third parties, doctors, nurses,health care advisors all seem to equal judgement.
With two Type 1s and a Type 2 in our house we have had more than our fair share of jumping through hoops for health. When Sugar Bear was first diagnosed we had to "fight" to get enough test strips to keep him safe. We've also dealt with running out of insulin, having the Dexcom covered for one child but not the other until further appeals (same insurance!), delayed delivery of medical supplies from the third parties, misdiagnosis of health (big one!), brush off from doctors, etc..etc..etc...And we've only been at the Type 1 diagnosis for a little over two years.
I don't know how these could all be fixed. A dialogue is most definitely needed, starting with educating the health care professionals and doctors so that diseases are not missed and parents knowledge and/or instincts aren't brushed off. Insurance companies need to not be able to overrule doctor's prescriptions. Schools need to follow doctor's orders and 504s and IEPs. School nurses (yup, in some schools they actually have these) need to be knowledgeable and compassionate and non judgmental. Schools need to have school nurses. Insurance companies shouldn't dictate what kind of insulin or meter or pump one "gets" to use like it's a luxury. Life saving supplies should never, and I mean ever, be late or denied because doing so can kill someone! And when you see more than one healthcare professional they should all communicate with each other like a team. You know, a team that has your best interests in mind. The endocrinologist, the pediatrician, the GI doc, the nutrionist, the neurologist, the dentist, the psychologist, and the optometrist (all my oldest son's doctors and they are all in the same facility) should be meeting with each other to be on the same page. It is very discouraging to take him to the pediatrician where they seem to know very little about his GERD or Type 1.
I have shed some frustrating tears and some choice words over the hoops we've jumped. The day Drago was diagnosed the pharmacy where we get Sugar Bear's insulin didn't have insulin stocked. It didn't have insulin! Luckily we had some already and could drive a half hour away to another pharmacy where there was some available. The medical world is fraught with frustrations.
We've all become hoop dancers even when we'd rather be jingle dancers. (For those unaware, hoop and jingle are native american dances. Google both. They are amazing.)
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