Patient Advocate

CaliCarly1976

I've been doing some research on patient advocacy. I have a friend who is 32 and going through breast cancer treatment, and she retained a patient advocate to basically inform her of her options, get her in touch with treatments (like acupuncture or massage) that your normal doctor may not know about (in addition to her regular treatments, not as an alternative), health and nutritionists, etc.  She is also helping her find insurance coverage for all of these treatments, AND recommending treatments that are covered by her insurer, that she may not know about otherwise. 

As some of you know, I am in this complete BS holding pattern having to jump through hoops (currently, 3 mos on clomid with an OB) before I can get a referral to an RE, and this is after months and months of the OB referral being rejected. I am seriously considering retaining a patient advocate, but not sure if they even exist for IF. 

Has anyone heard of this in the IF world? Honestly if it doesn't exist, this may be a business I would actually consider opening. 

https://en.wikipedia.org/wiki/Patient_advocate - for more information.  

curlylocks3

I'm a nurse and I've never heard of this as a job or company- most of the time the nurse ends up being the patient advocate! I think you've mentioned before but I forget, where do you live that you need a referral to an OB-GYN? 
It seems like my nurses have been pretty big advocates for me in terms of suggesting places to get my meds for the best price and names of therapists/accupuncturists/etc but I've also done tons of homework myself. 

Manada

I don't know how it is where you are, but we met with an infertility counsellor (NOT associated with our clinic, though our clinic has one) - to help sort out some of that stuff and questions for us.

We did one two hour session, which was reasonably helpful in helping us think up ways to self-advocate and other things to consider...

 

That said, as someone with a social work degree myself, I am seeing that this is increasingly an area that could use more support.

 

Mrsbabyhopes

I don't know the answer, but I would love to have a patient advocate. Please let me know what you find out.

LuClo

My insurance company offers a 'care coordinator' who does something similar. Unfortunately IF doesn't qualify for it. A friend was offered one for her highrisk pregnancy despite everything being completely fine. I pointed out how many doctors I was trying to coordinate at that point 5 and how *** tastic they had been giving me misinformation about coverage, but apparently IF still doesn't qualify.

CaliCarly1976

I have an ahmazing HMO (not) where I get my annual pap from my PCP. So I needed a referral for OB/Gyn for IF issues, so had to hit the 1 yr mark, even though I am over 35, THEN get a ton of tests referred by PCP (ultrasound, SA, blood work) before HMO would approve OB. I am in California. The good news is that its all covered, as long as I follow the steps. The bad news is that the steps are dumb and I will be 65 by the time I am approved for pregnancy :P

My girlfriend who has cancer has a patient advocate, who is through an organization outside of her insurance or her doctors, so they are 100% impartial. It is apparently a thing more for serious life threatening conditions. Its totally free for her, through a non for profit. I would be willing to pay for one though if it could help sort this mess out.

I'm glad I asked, seems like we run the gamut of situations and scenarios - whoever had a 2 hour consult, you are so lucky! I am lucky if I get 6 minutes. (I've heard that HMO docs need to meet with 10 patients an hour.) 

Unknown

Hi -- there are several national organizations for patient advocates:

Alliance of Professional Health Advocates, National Association of Health Care Advocate Consultants and the Professional Patient Advocate Institute.  Consumers can find advocates in their state through a free search on www.advoconnection.com.

 

We have a health advocate company in Washington State: Allied Health Advocates

 

There are also some national programs that are beginning to offer certificate programs:  University of Miami and UCLA being two popular ones.