Frustrated w/ Dr Appt.

[Paige]

We have a referral for a specific doctor and a neuropsychological exam. The appt was today and it was a different doctor who said nowhere in our file did it say anything about needing a neuropsych exam and they usually don't do them unless there has been a known head injury. Ugh! I knew it was a different doctor, but that happens frequently when there's many doctors in a practice. What I didn't know was that this doctor doesn't do what we were referred for. 

 

Has anyone had this happen? I had to drive an hour 1 way for this. We stayed and they did a background and said something about "we'll see" when I asked about the neuropsych that we wanted. I said we'd already done regular testing, but the dr wanted to do her evaluation to see if we needed the neuropsych. Doesn't our referral specifically for that eval mean someone else has decided we need it? We have an appt to turn in some questionnaires and talk, but I'm thinking about cancelling. I'm also worried that the insurance won't cover this appointment or it won't cover the actual neuropsych exam later if we proceed with their screening. I hate making uncomfortable calls.  :thumbdown:

[OneStepAtATime]

Wow, that stinks!!!   I have no good advice but my complete sympathy and commiseration is on its way.   :grouphug:  :grouphug:  :grouphug:

 

Doctors can be wonderful but goodness, they can also be total jerks...

[OneStepAtATime]

Could you call the original doctor that made the referral?  Why wouldn't they have written down why they were referring you?

[Paige]

Could you call the original doctor that made the referral?  Why wouldn't they have written down why they were referring you?

 

They did! I went back and read the referral myself and it was very specific. Whoever processed the referral must not have passed it on to the doctor they assigned us to or made an executive decision to disregard it. 

 

The original doctor is gone and no longer working where we go. 

[imagine.more]

Yep, we just had this happen too. We asked for a referral for an evaluation for possible FASD and the person we were sent to only tests for genetic disorders and said it was not possible to diagnose FASD. So we drove 40 minutes in rush hour traffic for no good reason. Super annoying. 

 

My advice is to be persistent and just keep trying. The phone calls suck but you'll feel better if you try everything you can now, within reason of course. I'm so sorry you had that experience :(

[geodob]

Paige, with the doctor saying: "they usually don't do them unless there has been a known head injury."

This might be the extent of the doctors use of neuropsych exams?

So that the report from the exams, might be written in terms of head injury?

Which is different from a report that defines learning disorders, and the effect on education.

 

Where I suspect that you are wanting an educational-neuropsych evaluation and report?

Which this doctor might not be able to provide?

 

[Paige]

Paige, with the doctor saying: "they usually don't do them unless there has been a known head injury."

This might be the extent of the doctors use of neuropsych exams?

So that the report from the exams, might be written in terms of head injury?

Which is different from a report that defines learning disorders, and the effect on education.

 

Where I suspect that you are wanting an educational-neuropsych evaluation and report?

Which this doctor might not be able to provide?

 

 

DD was premature and is very high risk for brain injury at birth. Her twin has a documented brain injury from the birth experience, which is what I was trying to explain to the Dr.  My other DD did not have a more complicated birth or NICU experience than her sister- the conditions that caused an injury for one were present for the other. We aren't looking for a psychoeducational exam, because DDs issues are not limited to the classroom and did not begin at school age.

 

I took this from an abstract: Preterm birth: neuropsychological profiles and atypical developmental pathways. Sansavini, A., GUarinia, A., Caselli, MC.:

 It is argued that developmental pathways of preterm children are atypical, and not merely delayed, and are characterized by different developmental patterns and relationships among competencies.

 

That is what we have clearly seen w/DD since birth. She is very atypical, which is why other doctors have recommended the neuropsych test- she does not fit any profile for any specific disorder.

 

 

I spoke to the Dr today and they are pretty much refusing to do the testing until they do their own regular psych tests (2 more appointments), and even then she "highly doubts" that they would consent to it. Since they are so far away, I'm pretty unhappy about that proposal. The issues they want to focus on are not issues that I (or DD) see as a primary concern. 

 

I'm going to have to call the insurance and referring doctor to see what we can do now. I really thought that if we were referred for neuropsychological testing, then they would do that, or at least start with the assumption that we were moving towards that.

Edited March 23, 2016 by Paige

[kbutton]

I'm going to have to call the insurance and referring doctor to see what we can do now. I really thought that if we were referred for neuropsychological testing, then they would do that, or at least start with the assumption that we were moving towards that.

 

I don't think that referring doctors are clear about what a referral means--sometimes it does mean you'll get testing, but other times it means you'll get to talk to someone else to be told no, wait, jump through my new hoops, etc. Often the referring doctor thinks you'll get testing if you need it, but I am not sure they always have the time and inclination to follow up, nor are they likely to call the specialist and say, "why didn't you do thus and such for my paitent?" So, if your referral goes nowhere, unless they think to ask you about it in the future, they might not advocate. 

 

If you have time and a good relationship with the doctor that referred you, you might tell him/her how things went at the appointment and ask for some help getting what you need. If the referring doc is a pretty good doc, he's not going to want to hear that patients he thinks deserve a closer look are coming away from the appointment feeling unheard and like they haven't had things explained well enough.

 

I would also be asking if the NP you were referred to has a certain bent within the field--I think that sometimes busy doctors will only want your business if you fit into their narrow criteria for what they want to deal with. As long as you have no "emergent" need, and they have more patients, they can find ways to decide not to help (we really only deal with kids who have xyz, or whatever--this is not my specialty area). If this is the case, you might want to find a different NP (if you have options). If you don't have options, maybe you can ask the NP why they are focusing on a completely different area than where your concerns seem are centered. If you go to the mechanic because you have a flat tire, it's one thing to change your tire and tell you that they found other work that needs to be done, but if they don't change the tire and act like it's not there, that's just bizarre. 

[Paige]

If you don't have options, maybe you can ask the NP why they are focusing on a completely different area than where your concerns seem are centered. If you go to the mechanic because you have a flat tire, it's one thing to change your tire and tell you that they found other work that needs to be done, but if they don't change the tire and act like it's not there, that's just bizarre. 

 

The other thing is that the referral clearly states neuropsychologist, and the Dr we saw was only a clinical psychologist. For some reason, whoever saw the referral first assigned us to a different doctor with a different specialty. I'm sure this doctor works with the neuropsych, but it's not the same. I'm definitely not going back. If someone wants to do typical psych testing, there's no need for us to drive that far- local people can do that just as well! We actually saw a local psych first and she was the one who said DDs issues were better suited for a neuropsych and declined to see us.  We want an audio processing eval and we cannot get it without a neuropsych exam. 

 

To go with your mechanic analogy, I feel it is like I took my car to the shop to fix a tire and the shop said, the tire is fine but the wheel needs to be fixed. We don't do that; go to the wheel shop. So, I go to the wheel shop and say, this guy says the tire is good but the wheel needs to be fixed. They say, we won't even look at the wheel until we change all four tires and you drive off and see if that helps. I say I don't want to pay for 4 tires to be changed! They say, tough cookies. 

 

My referring doctor is no longer in the practice, but I think the other doctors will be supportive. I have options, but they were not as appealing. I don't understand why the Dr is so opposed to the testing. I could see why a cardiologist wouldn't want to perform surgery on someone referred to her right away, but testing won't hurt DD. 

[kbutton]

The other thing is that the referral clearly states neuropsychologist, and the Dr we saw was only a clinical psychologist. For some reason, whoever saw the referral first assigned us to a different doctor with a different specialty. I'm sure this doctor works with the neuropsych, but it's not the same. I'm definitely not going back. If someone wants to do typical psych testing, there's no need for us to drive that far- local people can do that just as well! We actually saw a local psych first and she was the one who said DDs issues were better suited for a neuropsych and declined to see us.  We want an audio processing eval and we cannot get it without a neuropsych exam. 

 

To go with your mechanic analogy, I feel it is like I took my car to the shop to fix a tire and the shop said, the tire is fine but the wheel needs to be fixed. We don't do that; go to the wheel shop. So, I go to the wheel shop and say, this guy says the tire is good but the wheel needs to be fixed. They say, we won't even look at the wheel until we change all four tires and you drive off and see if that helps. I say I don't want to pay for 4 tires to be changed! They say, tough cookies. 

 

My referring doctor is no longer in the practice, but I think the other doctors will be supportive. I have options, but they were not as appealing. I don't understand why the Dr is so opposed to the testing. I could see why a cardiologist wouldn't want to perform surgery on someone referred to her right away, but testing won't hurt DD. 

 

I'm sorry. This is layer upon layer of miscommunication with no professionals listening to you or to what you've been told you need to do to get what you need.

 

If the rest of this doesn't apply to you, please disregard, but I've had the experience that places say one thing and do another...

 

So, the whole reason for the NP exam is to get an APD evaluation? We had to have some pysch testing for that, but they were okay with a clinical psych (I know yours might not be). Did you ask if it had to be an NP, or if it could be a clinical psych? I ask that because I found out that a local APD place "says" on their website that they don't test kids with autism, and they don't test kids whose ADHD is not under control. Well, we were 99% sure my son had ADHD, but we didn't know what their criteria for under control was. They made it sound VERY BAD to come into their office with ADHD, even though we were trying to rule in or rule out CAPD along with ADHD. It's just frustrating. I was also bothered (on a personal level) that they won't test ASD kiddos across the board. My other son has ASD and would behave very well for testing, and CAPD is often comorbid with ASD--that policy leaves people with not many places to go. Later, I found out that a friend took her child to this clinic to get testing, and he has both ASD and ADHD!!! Apparently you just have to call and "explain." Burns me up.

 

So, if you are going off of a website or talking to a secretary with a sense of entitlement at the office that does auditory evals, you might be getting half-baked information.

 

I hope you can get what you need. That's just crazy that no one will really look at your facts and give you a way to get what you need. I hope the peds practice can get this straightened out.

[Paige]

Thanks! I cancelled our future appointments with the first provider, spoke with several people at the pediatrician's and then with the insurance company and we have found someone closer who should be able to do it. The pediatrician and insurance company were surprised that the provider accepted the referral in the first place if she wasn't qualified to do the testing requested. The new Dr is not a pediatric specialist but does see children, and I think DD (almost 12) will be fine with that. I sometimes prefer regular/ all ages doctors anyway. 

 

 

[kbutton]

Thanks! I cancelled our future appointments with the first provider, spoke with several people at the pediatrician's and then with the insurance company and we have found someone closer who should be able to do it. The pediatrician and insurance company were surprised that the provider accepted the referral in the first place if she wasn't qualified to do the testing requested. The new Dr is not a pediatric specialist but does see children, and I think DD (almost 12) will be fine with that. I sometimes prefer regular/ all ages doctors anyway. 

 

Oh, very good!