Etiquette ? re: getting a referral to new doc

I have what I'm told is a relatively rare neuro disorder. The doc who diagnosed me has since moved far far away. He told me that if my symptoms continued to progress that I would need to have a kinda dicey surgery done. Unfortunately, the only docs he said he would trust to do it are at Washington University, which belongs to the hospital system that is the direct competitor to the hospital system I work for...so my insurance won't cover seeing docs or getting testing done at their facilities.

I just found out that the Mayo Clinic and Wash You have entered into a collaboration to advance treatment for pts with my problems. I need to find a good doc who can treat me and help manage my symptoms (which are progressing) that also takes my insurance. Would it be out of line for me to contact the program at Wash U for recommendations of a doc? With the knowledge that I may need to go to Wash U for surgery eventually, I'd prefer for to see someone they have a good relationship with in the meantime.

Sorry so long...I get wordy when I'm tired. Thanks in advance for any comments/suggestions.
Talk to your insurance company. If you have a condition that requires treatment by someone NOT on their provider list they may approve an out of network provider. You might need to see an in-network provider first to get a proper referral. Good luck.

Would it be out of line for me to contact the program at Wash U for recommendations of a doc?

If HR knows about your condition sometimes they will got to bat for you. A co-worker's child had a rare condition and the best doc in the country worked for a rival hospital network. HR petitioned the insurance comp for her and got tx at the other hospital approved. They also helped her with time off. Just a thought.

Although it seems obvious now that it's been pointed out, I hadn't even considered that being a strange mutant might make me more attractive to them. It seems kinda silly b/c in the grand scheme of things it's not that bad...right now my problem is that I have lost surface sensation in my fingers and palms. But it's starting to affect my work and that sucks.As far as I recall, statistically, about 2 in 1,000,000 live births have the same skeletal abnormality as I do. (Most spontaneously abort.) And many die of childhood cancer at a young age. There's no real connection that anyone's found. It's bizarre. (Although the statistics may not be accurate b/c there's not been many studies done.) And no one seems to know if it's genetic or not although there's anectodal evidence that it may be.The "syndrome" that it causes me is usually caused by injuries, so most treatment modalities are geared towards that. Which requires PT exercises that haven't helped.Thanks so much for your input. I hadn't realized that there were possible insurance interventions either. I'm going to start out by emailing the program at Wash U. And see what happens.

Good for you! I hope you get what you need.

I don't think that you would be crossing a "taboo" line at all. Everyone wants the best healthcare possible, and by your asking for a referral would be in your best interest. Can you contact the doc that dx you and see if s/he knows anyone there? If you can get their suggestions, and you get the names of some docs that would be willing to treat you, you can then compare the results and slim down your choices.

Go to someone in your own network who may be able to intercede on your behalf to the insurance co. for the appropriate referral.Many many years ago, one of my children needed abdominal surgery, and the ins co we had said that the general surgeon would be fine. He knew better, and he arranged for the top peds GI surgeon in the city to be 'on call' and available for my son's surgery. We never actually saw the specialist - he was only in the OR - but everything went well.Really good docs know their limitations, and know who to call when necessary.Best wishes.

In my opinion, your health trumps your job! Go get whatever help wherever you can however you can. You need to be your own advocate. All the other posters had great ideas for working with ins co and HR. Forget etiquette!best of luck to you.

OP, please keep us posted on the outcome of your situation. We are all thinking about you and want the best possible care that you can get.