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  1. #1

    Default Doctor Referral Question...

    So I shared a couple weeks ago that we finally found out what is causing dh's debilitating pain. The major concern with his condition, besides the pain, is that excessive cerebral spinal fluid pressure can cause eye sight to rapidly deteriorate and leads to eventual blindness if not monitored and controlled. His vision is already 20/400 but is still correctable with glasses.

    The university medical center that is treating him is three and a half hours away but they are the only ones who are able to provide the care and has the specialists that he needs. His primary care doctor, who is 45 minutes away from us and the only one accepting new patients within an hour of our home, has to issue referrals for the university medical center to treat him and have insurance pay for his treatments and check ups. He is physically disabled due to his condition and receives disability and medicaid. So we can't just get him different insurance sadly. I would if we could, but it's just not an option right now.

    Now all that background out of the way, here's my issue. At the same time the referral for the spinal tap was requested from his pcp, there was also a request for a referral for neuro-ophthalmology. We got the spinal tap referral, obviously, but we still had not heard from neuro-opthalmology by new year's so we called them to find out what the hold up was. Apparently they were still waiting for a referral from his pcp. So we call them and ask them to send the referral. Still had not heard anything so called the univeristy medical again last Thursday. They said they still didn't have the referral. Call and email the pcp's office asking them to send the referral. We get an email back from pcp's office on Monday asking if we (the patient) have a fax number for the university medical center??? Politely tell them no we don't and cannot find one their website. Call university medical center today. They tell us that the pcp's office sent them a note saying not to schedule because the referral was denied. They tell us to make sure the pcp's office is requesting a medically necessary neurological ophthalmology appointment and not a yearly eye exam and that there is no reason it should be denied given the diagnosis my dh currently has. Relay all this to the pcp's office in an email. They email back saying they have no record of a referral or a denial or of a note being sent??? Ugh! So ask them politely, again, to send the referral with all the pertinent information relayed to us by the university medical center to the pcp's office. Just got another email back from the pcp office wanting to know if we have a different fax number for the university medical center... for the love of Christmas cookies!

    So my question... if you are still here... how common is it for you to have to do all the leg work for referrals like this? When I was using military doctors, the referral person that worked in the office handled all this. They called to find out the fax number for what ever office you were being referred to, whether it be military or civilian, they didn't ask the patient to do that for them. They corrected misdirected and plain wrong referrals and apologized for the delay in care because they didn't do their job right. This isn't the first time we've had this kind of problem with this pcp's office but the doctor herself is wonderful both in her bedside manner and her knowledge and expertise but the staff in her office, who is not hired by her but the corporate entity that owns the clinic, is subpar at best most of the time. Are my expectations just too high? Would you be ready to spit fire when they obviously had no problem submitting one referral to this facility but seem unable to submit a second and then want the patient to do the leg work for them to get the second referral? Just wondering where the disconnect is here...

    We are looking into getting dh a private patient advocate just based on our entire experience with his medical care but just like the lack of doctors in the area, there aren't exactly tons of patient advocates either.

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  3. #2
    Senior Member Arrived RTB's Avatar
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    Feb 2012


    Big hugs! So frustrating. So, I think the answer is, it depends. Nurse here, and my mother spent years as a nurse case manager . . . my advice would be to call your insurance and ask to see if you can get connected with a nurse case manager. They can help you navigate complicated medical care, and all insurance companies / hospitals should staff them.

    That said, (grain of salt) when I sought a nurse case manager for DS's asthma (through my insurance), I was told I they could only assist me if I stayed within the providers of the main system. The main system did not offer a pediatric pulmonologist - so they couldn't help me (because the MD I needed was out of system).
    DS 15, DD 13
    Year 9

  4. #3
    Senior Member Enlightened
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    Sep 2013
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    My husband gets a referral paper and is told to call his insurance to see the specialist. They literally don't do anything. My drs. I have to call monthly for prior auths. medication.
    DS- 17 12 grade Dual enrollment, and 1 co-op.

  5. #4


    I've dealt with Tricare and Aetna prior to dealing with Medicaid and I only thought insurance was a pain to deal with. I would gladly go back to dealing with either of the private insurances I've had before if it meant I didn't have to deal with Medicaid anymore. Dealing with Medicaid feels like a full time job sometimes. But this time, it isn't even Medicaid that is the problem, it is the doctor's office staff.

    From what I've read, a nurse case manager and a patient advocate are two names for basically the same thing. Medicaid will not pay for nor provide one or recommend one. So our only choice is to interview and hire one privately. Which I'm fine with, I've been telling dh for a while I think we need to look into getting one for him.

    I guess I'm more wondering if you would be caught off guard by the referral specialist in the doctor's office asking you, the patient, to find them the fax number for a facility that they already sent one referral to. I mean, if this was some off the wall doctor that we specifically asked to be referred to, sure I would happily supply the information without being asked but this is not the first time this same person has sent a referral for us to the largest medical facility in the state. I just find it really unprofessional for them to be asking the patient for information they could easily get with a simple phone call.

    After the second time she asked, I did in fact call the university medical center and told them the pcp's office needed their fax number for referrals and even the person from the university medical center thought it was odd that the patient was calling for this information and not the pcp's office. In the time it took the referral specialist to send two requests for me to get her the information, she could have called herself and got it. I always thought that was their job as a referral specialist to locate this information. She's not a nurse that works with patients, all she does all day is referrals. I honestly don't even know if she has nursing credentials or if she's just some kind of secretary that only does paperwork.

    We've been round and round and round with this office staff. Everyone around here who uses this doctor's office says the same thing, if the doctor wasn't fantastic and really helpful despite her office staff, no one would go there. When we first started going to this office, the was a gentleman that worked in the office who was fantastic. Always helpful and polite and even went out of his way on more than one occasion to make sure everything was taken care of. I'm guessing from the reactions here that the current office staff is more the norm and the doctor and the old office manager are the exception rather than to be expected :-(

  6. #5


    Most patient advocates are social workers, so they are trained to navigate between systems. The university hospital should have one who could provide some advice. I would start there.

    If you were with Tricare, I’m assuming he’s a veteran? If so, have you tried going through the VA for this? Does he have a disability rating of any kind with the VA?

    Sorry, I don’t have much more, as we mostly work with the VA, which is own special kind of hell.

  7. #6


    No, my current husband is not a veteran and has no military affiliation at all. My ex-husband of 13 years was a veteran. He was in the military for 10 years and then a contractor for the military after he got out (wasn't in long enough to retire) So that's where my experience with Tricare is from. Other than a few blips here and there, that seemed huge at the time, we never had much problem with Tricare but none of us had any special needs then either. I know a lot of people who have to deal with the VA though. I surely do not envy that at all.

    My current husband is deemed fully disabled by Social Security and receives SS disability. We are hoping that if we can get all these referrals in order, that we can get him a brain shunt to help keep the CSF pressure levels down and that he might be able to return to work and we won't need disability or medicaid anymore. That's the hope and the plan anyways.
    Last edited by MapleHillAcademy; 01-09-2019 at 10:24 AM.

  8. #7


    Little bit of an update....

    The gentleman from the university medical center that ended up calling the referral specialist at our pcp's office himself to try to get her to send the correct paperwork. She was apparently quite snarky to him as well and still has not sent him the correct paperwork but he went ahead and scheduled the appointment for us anyways and said he will make sure the paperwork gets handled correctly.

    I see a therapist weekly for other, mostly unrelated issues but we talked about the debacle we've had getting this appointment made and even she was astounded that this referrals specialist is being so difficult. Apparently it is standard for this paper she's not sending to go out with any Medicaid referral. She (my therapist) couldn't comprehend why the referral specialist would act this way when it was her only send half the required paperwork that was creating the problem to begin with.

    I guess we'll never know exactly what is going on but at least we have the appointment made and hopefully the office staff won't take it out on us Monday when we take dh in for his monthly evaluation with his pcp.

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Doctor Referral Question...