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Thanks, @lewin, for kicking off this discussion. The longer I hang around Connect and the more posts I read, it grows more obvious that one thing we folks with our varying forms of PN have (and we've far more than just one thing in common) is the seemingly never-ending search for good health providers. Some months ago, a friend introduced me to a service I'd not heard of before: a Patient Navigator. My friend explained that the Navigator's role (and my friend is one part-time) is to help patients make their way through the labyrinthian maze of medical paperwork, making good choices among a gazillion specialists, interpreting lab results, etc. Of course, the Navigator my friend was talking about had nothing specifically to do with neurology. Reading all of our Connect posts, it struck me how much of help it could be to those of us with neurological disorders if there were such a service as a Neurology Patient Navigator. –– Ray (@ray666)
Replies to "Thanks, @lewin, for kicking off this discussion. The longer I hang around Connect and the more..."
I've heard of Patient Navigator before, but unfortunately forgot about its existence and purpose. I totally agree with you that such an Neurology PN would be incredibly helpful and a veritable blessing! I've been doing all the work, for myself and my husband, for years. Exhausting. Frustrating. HBP raising experiences! And in my case especially, I am so tired of hearing the dreaded words "Sorry, but there is nothing more I can do for you, and no one else to refer you to other than Pain Management." Translation: "Accept your conditions and what pain specialists decides is best for you, learn to deal and live with it, and best not to ask me for any more medical help."
I'm going to contact my insurance company today, to investigate the aspect of Patient Navigator. Thankfully, we both have excellent insurance so perhaps that does exist, even if by some other title.
The thought does arise that a PN may well exist as a private entity, available on a fee schedule.
With all our medical issues, including both of us dealing with complex neuropathies and me with chronic pain syndrome, I can imagine that we would fill their time substantially...
I'll let you know what I find out.
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Couldn't agree more. We need systemic changes made in our health care system. Other countries forcus on providing care and not making money.