In reading all the posts this morning, it has become clear to me that those of us in the MS community, need a road map or a owner's manual for navigating with insurers. If I want to get from my house to another several states away, I can type in an address and get a detailed plan: turn left, go 2 miles, turn left on County Road, etc, Yet if I had a problem with an insurer, as so many do, I would have no idea of where to turn. Where is the starting point, if that doesn't resolve the issue, then what, and what next? Appendices in my fantasy manual would have a list of drugs, companies, and phone numbers for their problem/solution hotlines. There would be spaces to keep other important numbers in one place for neuro, pharmacy, infusion center etc AND plenty of pages for note taking with columns headed by date, time, name of person spoken with, Qs asked and answers given. Perhaps this would need to be a binder with room to add more pages as necessary, given that the problem is so long standing and ubiquitous.
I haven't had to go up against bureaucracies in a very long time, but I don't do it well. My first few times were not successful experiences until I learned to carry a clipboard with me, start by noting the date/time/person before I began asking my questions. This helped organize me, gave me a record, and dissipated some of the cognitive fog that descends when I am stressed. I don't think it was my imagination that this improved not only my experience but the quality of responses. It is so hard for us little rabbit foo-foos to navigate the big wild world out there; we need all the support we can find!
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goatgal
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I recently had an issue with my Medicare, they decided that they were no longer my primary insurance and that my insurance that had been secondary for 25+ years was now primary. They did not inform me or my other insurance of this, I found out when I started getting medical bills that said that my Medicare was saying that they were no longer primary. I called Medicare and they just said that they were not primary. I called my other insurance and they said that they were not primary. This went back and forth (for months) until a very nice lady at Medicare finally changed Medicare back to primary. I called all of my doctors and asked them to resubmit the bills to Medicare, which they did. A couple of months later we started getting bills that said Medicare was saying that they were not primary again. I called Medicare again and another very nice lady said she didn’t see why it had been changed but she changed it back. There were actually many more calls between myself, Medicare and my other insurance and Medicare could not, or would not, tell me why they changed it, when they changed it or what changed on my end to make them decide to change it in the first place!
I love that I have good insurance but I had that they have such control over us. 😤🤬🤯🤭😬😜
Morilyn We are indeed prey in the wild wild world of government agencies an private insurers. I am missing a few tufts of fur from the tip of my bunny tail from losing an argument with rehab over what I continue to feel was premature discharge.
But this was supposed to be about you and not me, sorry. I am truly sorry for any of you that are having difficulties with insurance/funding for medication or other health care, it shouldn’t be this hard!
Juliew19673 As I reflect upon my clipboard practice, this is what I think was occurring: by starting with the date, time, and person's name, I always asked how to spell his/her name. Often, I would immediately be referred up the chain of responsibility, when previously I might had heard that same person's best guess. My new method took a little longer, but I received more accurate information. The person who answers the phone is often the most vulnerable to a poor performance evaluation when held accountable. And though I never needed to use my records for a legal action, they were useful documentation for a letter of complaint.
goatgal Between the insurance company, the specialty pharmacy, and the hospital, they keep my head spinning round and round! Taking notes is essential for me as it serves as what was done, and what needs to be done.
I so agree. From the beginning of this MS thing, I had to start keeping notes like you've suggested. It's more difficult for those on the other end of the phone to pass us off when we can state that we talked to so-and-so on this date at this time and was told this information. With our cognitive issues, it's easy to forget all those details, and we have to start from scratch with each call.
I also used to be more timid, thinking I'd be in over my head, or that somehow others would figure this out for me. I soon realized that I would have no DMT if I didn't work on getting things going myself.
Totally agree with everyone 👍. The main thing is to write everything down, time, date, person, etc. what said. We have to keep our notes better than there’s to have any kind of chance on issues that arise 😡. It never seems to end, something always comes up 🙏 Ken 🐾🐾
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