Who manages care???

[hbridge]

As some of you know, DC is home from college very sick. The doctors think they know the issue (it's autoimmune) and there is a plan in place. For now, we manage symptoms (which are severe and sometimes need urgent care).

The ER and DC's specialist have all told me that primary care should be managing the care and coordinating issues; we have been told that we are supposed to call the PCP for things that don't fit any of the specialists. HOWEVER, primary care tells me that it's MY JOB to coordinate care. PCP told me that I need to let ALL the doctors know about medication side effects, new symptoms, new issues, ect. We went in last week with an urgent symptom that the current specialists weren't comfortable handling (They all told me to see DC's PCP). PCP wouldn't touch the issue and referred to another specialist. As a new patient, the new specialist didn't have openings for two weeks (understandably). The urgent symptom got worse as the day went on and PCP sent us to the ER AGAIN (they have done this three times in the last month, usually within 12 hours of us being in their office).

I am so overwhelmed with 10 specialists and 15 medications (all but 4 are new, some OTC, but all "prescribed"). Now I am being told by the PCP that for every new issue I need to contact all the specialists and coordinate care; PCP is not part of that team.

This is not a Full-Time job. All I do is coordinate specialists and manage DC's symptoms. I have had to leave one of my jobs and cut my hours to the bare minimum for the other (the boss is not happy).

It has been months and things are worse, not better. The specialists are (almost) all amazing (we are replacing one), but the PCP is worthless. He hasn't actually diagnosed anything (correctly) in 8 years...


I am DONE and there is no end in sight.

[georgiegirl]

I am so sorry. That sounds very overwhelming. Your PCP should absolutely be part of the team. It sounds like your PCP does not feel comfortable being in charge. (I know it’s not similar at all, but on a much smaller scale, my DS1 saw 3 new specialists in addition to his 2 regular ones this last fall, and the PCP was most definitely involved. She was very willing to push out messages and send out referrals. There was one time when she recommended ER over visiting her because her office didn’t have the imagine necessary.)

I assume this isn’t an option, but are the specialists all with the same health care system? If that is at all a possibility, that really helps. Then you can add every doctor to the care team and they receive updates. And I assume you have every specialist listed for ROI every time you see a new specialist, so they will get the new information and theoretically know of new meds and potential interactions.

I’d shop around for a new PCP since it doesn’t sound like yours can handle it. Try internal medicine rather than family practice, since internal medicine doctors will be more familiar with coordinating with multiple specialists.

I’m so sorry you are going through this, and I really hope things get better for your DC.


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[Liziz]

In theory, the PCP should be the one to coordinate the care and coordinating issues. In reality, there are a lot of PCPs out there that function much more like urgent care providers and will not manage complex care or handle issues beyond the incredibly basic sinus infection/flu. There are also some great PCPs out there. I think it sounds like it's time (maybe far overdue!) to look for another PCP. At this point, given that you know what's going on with your DC, you can be more specific with what you're looking for in a new PCP and hopefully find someone who is comfortable coordinating the care. I agree with PP that you should be looking for an Internal Medicine physician (vs. Family Practice)

It sounds like this disease/condition doesn't fit nicely into a single category in terms of specialists, but it also might be worth seeing if one of the most active specialists can fill that roll. My cousin has an autoimmune issue that causes tons of different (seemingly unrelated) issues, but from the way she talks it seems like her go-to and the doctor that does most of the coordinating and triaging of her symptoms is a rheumatologist, not her primary care.

Finally, sending you and your DC some hugs -- this has been such a long term challenge for both of you. You are doing great and your DC is so lucky they have you to help advocate for them. I am very hopeful that the plan in place will be able to be carried out soon and your DC (and you!) will get some relief!

[mmsmom]

I’m sorry you are dealing with all of this. I agree that it is time for a new PCP. Also, if there is an association for the auto immune diagnosis, reach out to them as they may be able to recommend PCPs that have more experience with your son’s diagnosis. The association may also facilitate support groups that can help.

[ett]

I'm so sorry for all that you are dealing with. I agree with finding a new PCP if possible. (There is a huge PCP shortage in my area so that would not be practical advice here.) And yes, if all the specialists are in the same hospital network, they should be able access his medical records and see what medications he's on.

[o_mom]

Have you talked to your health insurance company about coordination of care?

It is in their interest to keep you out of the ER. I know at one point when we were dealing with a fairly complex medical issue, our insurance company had program where they assigned a care coordinator, essentially an RN who kept track of all the different pieces. It might be something to look into.

[hbridge]

Thanks everyone. DC has a team of 14 medical providers. 12 of them are amazing, this latest issue has made us realize how weak the other two are. One specialist mis-diagnosed a major symptom multiple times (this symptom got progressively worse over 6 months until DC couldn't move without screaming, even then they would not run the tests to confirm their diagnosis); we are seeing a replacement for them tomorrow. The PCP also is a weak link. However, it is also time to move beyond the pediatrician (DC is 20), so that will be the next thing to work through.

The hope is that the auto-immune issue is "curable". It's a complicated, rare, type that the medical team thinks will resolve, but it might be 6+ months. Of course there is no way to confirm that until things resolve on their own (or not).

To further complicate things, we are switching health insurance plans with the month. Thankfully, it is the same insurance company, just a different plan with the company.

DC has been in the ER 6 times since mid-October. Then this week the doctors wanted to admit them (thankfully, we figured out how to do everything outpatient).

Since DC can't be in school, they are starting to make plans for the next 6 months. Now there is frustration that they are too sick to follow through on any of the plans.

[LBW]

I’m so sorry. I’m dealing with some complex medical issues with one of my boys, so I understand a little of what you are dealing with.

If I was in your situation I’d ask some of the specialists for their recommendations for PCPs who have worked well with them in the past.

[georgiegirl]

To further complicate things, we are switching health insurance plans with the month. Thankfully, it is the same insurance company, just a different plan with the company.

Ugh, we just went through that. It has been VERY challenging because half of the providers kept billing the old insurance even though i made sure every provider had a copy of the new insurance card. We had to switch specialty pharmacies and switch formularies for DS1’s specialty medication, which of course had a National shortage, and the new specialty pharmacy wasn’t as good as the old one. And then the new company spent us a flex spending card that didn’t work. We are still dealing with certain providers billing the wrong insurance. I’ve probably spend 40 hours dealing with issues from the insurance switch over (DH’s health care system was bought out by a different one and they were both BCBS,)


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