Etiquette ? re: getting a referral to new doc

[mama_d, BSN, RN]

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. :)

[classicdame, MSN, EdD]

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.

[rn/writer, RN]

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

This is actually a very good idea. They may be interested in YOU if you have a rare condition. It's possible that they could work things out with your insurance company, or, if that doesn't work, you could be eligible for a clinical trial of some sort.

If your ins. co. won't pony up a decent amount for someone who is out of network, that isn't the end of the story. If you can demonstrate that another provider offers something specific that you can't get in network, you can appeal their decision. Lots of times they say no and hope that people will just slink off into the sunset. But I have appealed (and I know others who have done this, as well) and have gotten approvals for docs and procedures that were initially rejected.

Even if the ins. co. doesn't give you a green light, the other facility might be willing to work with you, either by accepting the out-of-network amount and writing off the rest or by working out a reasonable payment plan.

The fact that your condition is rare and you're wanting to be seen at a teaching hospital means you have something to offer them.

Please, contact them as soon as you can.

I hope you find the care you need at a price you can afford. But even if the financial aspect looks daunting, please, get help for your condition before it gets any worse.

One last thought: Your thread title mentions etiquette. Yes, it's important to be considerate of others and, no, you don't want to step on any toes unnecessarily, but when it comes to serious health concerns, etiquette can take a flying leap.

I learned this from one of my daughters who has a son with spina bifida. Many times, she has had to be a squeaky wheel on his behalf. If she had kept quiet and remained polite when she disagreed with something, we would have lost him a long time ago.

If you find it hard to advocate for yourself, pretend you're doing it for your child or your parent or someone else who is near and dear to you. Go after everything that you need and keep on asking until you get it!!!

Please, let us know what happens. You can do this!

[Flo., BSN, RN]

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.

[mama_d, BSN, RN]

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.

[rn/writer, RN]

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

[canesdukegirl, BSN, RN]

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.

[merlee]

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.

[BrookeeLou_RN]

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.

[canesdukegirl, BSN, RN]

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.