Clinic issues

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Distinguished member
Aug 15, 2022
Tomswife, I have a story for you. I went to clinic last Wed., and yesterday, at my wits' end, I wrote to my primary on her portal and explained that none of the decisions made at clinic had been followed through on with actual orders. I had written to the clinic portal multiple times but was getting no answers at all. So I told my primary that the clinic doctor was unresponsive and asked if she could she please order the things for me. I attached the office note that I had downloaded from the clinic portal, that documented all the decisions. Here's her reply, verbatim:

Hey M,

I can absolutely take over your Protonix; would you want to switch to a packet form of the med instead of the pills? You would mix it with about 4 oz of water; if you want to stick with the pills for now that's fine, just wanted you to know that you have options.

As for the orthotics and PEG tube; those orders have to come from [clinic dr]. I just got off the phone with their office and advised them to respond to you as it is all laid out in [clinic dr's] note. She is what we call "captain of the ship." Due to your ALS diagnosis, she should be the first person to get the things you need in place that revolve around ALS. Now, that responsibility often falls on the PCP, but we are often not aware of all the resources that can help someone out with a very specific disease or know the most efficient way to order things. Hospital beds are something we order often as there are several needs for that type of equipment. I would hope [clinic dr] would be aware of the needs of ALS patients and have it ordered for you in a timely manner. If you don't hear from them today let me know and I'll call again tomorrow.

-[name of my primary]

Lo and behold, I started getting messages via the clinic portal, from the clinic dr's nurse-assistant, who (along with the dr) had been on the dark side of the moon for a week. For each bit of progress he reported, I thanked with !!, then reminded him of the next thing. Here is the list of stuff that wasn't being followed up on:
  • Relyvrio script to specialty pharmacy
  • PEG order (I want this because my first pulmonary fcn test came out 66% and 60% -- scary! Also, I keep getting my Calcium tablets stuck in my throat even when my spouse cuts them up into multiple pieces)
  • foot brace order
  • hand splint order for sleeping (when I bend my fingers, they get stuck in the bent position)
  • suction device
I think that's a lot of stuff to be dropping the ball on!

Also, this afternoon I had 2nd appt with local neurologist, and he said that if I send him the clinic office note and a list of what hasn't been followed up on, via his portal, he will issue whatever orders I need, if he's able to. (He couldn't order the PEG.)

I haven't tested the local neurologist approach yet but I'm hopeful. And wow, my primary really went to bat for me.

I tried several different primaries. Rejected the first two because the follow-through happened at a snail's pace, with constant reminders (portal and phone). I think I hit the jackpot with this one. She happens to be an NP. She used to be an ICU nurse before she went back to school.

I hope you can get something local and effective set up too.
so glad you got that help - what a nightmare
I guess I have to give credit to Emory. We really didn't have these problems. And communication with Synapticure seems okay as well. I think other centers must be seriously short staffed and overwhelmed.
M you should see an orthotist for the braces they are the experts. Did you sign the form for relyvrio that goes to amylyx. I don’t think it is abnormal that it hasn’t reached the pharmacy yet
Mny. I am glad you are getting help. Our clinic DR. is out of the office for 3 weeks. And that is often the case...she travels to speak, learn, collaborate, etc. She is also on clinical trials. I have been wondering if we can switch to another dr in the clinic. But....i have been told that the delays and ball drops are typical of this clinic.
I am very surprised your local neurologist will provide care. He/she is not concerned about conflicts?
Help me understand potential conflicts, please, Tomswife. I figured he was taking a team approach.
Nothing wrong with a local neuro and a clinic neuro if you need them both (like now, for equipment), but generally with portals and telehealth, one neuro will suffice for the long term and after equipment, you may stop seeing them except as required for any refills unless you are enrolled in a trial. It is primary care that you are likely to rely on the most, just as pre-ALS.

There need be no conflict or confusion so long as each can read the other's notes, which the EHR facilitates (often Cerner or Epic). You can check your various "charts" (portal pages), to make sure that the med and condition lists are the same and up to date.

Generally, the only time who writes what is an issue is if something requires a prior authorization -- ideally, you want the office that is best at following through to be the office that writes the rx.
My local neurologist will write orders for DME. I referred a newly diagnosed ALS patient to him because the guy was having lots of pain and my neuro specializes in pain management. He got the guy a PWC. My neuro also employs PTs and OTs along with Cannabis doctors. He even has a chiropractor.
Good point about ordering rx. In our situation it was our GP that did all the scripts. If something new was wanted our specialist physician would let them know.
I thought the Centers control Radicava and Relyvrio. My first neurologist (2 hrs away) told me that.

My primary isn't comfortable ordering ALS-specific things. Not sure how to encourage her. I send her my clinic office notes.

What is EHR?

OMG, I have 5 portals. But I like using portals.
Electronic Health Record
Yes, ALS meds that are prior authed are generally going to need a neurology rx. It does not have to be an ALS clinic, which a lot of people don't have access to.

I'm not saying that PCPs are comfortable ordering everything ALS, just that at a certain point there isn't much more ALS-specific stuff to order. It's easy to focus on palliative care and hospice as agency offerings, but primary care docs, NPs, and PAs have long been involved in these, much more so than most neurologists, who naturally are focused on making the dx and implementing treatment.
I wonder why the far-away neurologist I started with told me the centers control the access to the specialty meds. Also I wonder why the local neurologist said he could not order my feeding tube. Both of them are supportive and order what they think they can order.
When they know that you are participating in clinic, local docs may defer to it and in the case of the tube, it's done at a hospital so there are privileges involved -- after all, it's a specialty center. But again, you can get the big ticket stuff regionally as needed and then have whatever docs you like that are closer to home.
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