Overview / intent / background

Note: We are with UCSD Health, headquartered in La Jolla, California, so much of the information will be UCSD - specific.

Unfortunately, no longer being 25, my wife and I have had medical issues. Navigating the medical system is complex, and often exasperating.

I notice that basically, i.e. on the whole, the systems and people are wonderful, caring, and really interested in keeping you healthy.

Unfortunately processes "break" at the smallest issue, being an engineer, it's frustrating navigating things that are not clear, and are poorly designed systems.

There is a huge issue with communication and information overload.

Again 80% to 90% of the "experience" is GREAT, and we have a great GP and Cardiologists.

Gateway to the "system" / quick links

There's more detail following, but here are some "starters"

I have someone in the hospital, how do I find out how/where they are:

  • call the main number, they should tell you where they are.
  • Use the phone list below for the various locations
  • If in a ward/ICU, ask for the nurse taking care of your loved one
  • If you get nowhere, ask for the "charge nurse"
  • If you still get nowhere, show up in person

I want some detailed status on tests, etc.

Basically you need access to your loved one's MyChart. Get this set up ASAP. Don't wait until they are in the hospital. Do this as soon as you enter the UCSD (or any other system). Normally all you have to do is get your loved one to agree to your access.

I'm just starting out with UCSD (or other system)

  • Get your primary care doctor
  • Establish good communications, if you cannot, get another primary
  • Go see your primary and start a plan of care
  • Get referrals to the specialists you need
  • Enter "tracking"

 

OK, let's get down to the details on how to make the system work for ME!

 https://health.ucsd.edu/patients/

we listen contact number 619-543-5678

 

The EPIC/MyChart system - UCSD, Scripps, etc.

This is the computerized base of operations for many medical groups. Used properly, it's pretty good. In San Diego, UCSD, Scripps, and North County Health all use it,

BUT!! There are a number of features and not all groups have all the features.

The underlying data base and system is EPIC, and that is what the medical staff uses. Your interface to EPIC is MyChart, which is the "window" to the EPIC system for patients.

Your daily MyChart routine:

You must realize that this is a complex system, and the information you NEED to access on a daily basis is in several places. To make things easier, you can customize your menu to put the things you use most often in your personal menu. I suggest the following order for at least the first 4.

1. Reading incoming Messages:

This is where most stuff comes to you, and it is like text messages on your phone. When you enter, you see them sorted by date, the newest on top.It's a great system but it's USE by UCSD is FLAWED.

Be sure to check daily! There is more later, since you cannot check JUST messages.

   Sending Outgoing Messages:

The biggest issue is that you CANNOT contact just anyone, you can only contact a poorly updated list of people, or reply to an existing message WHERE REPLY IS NOT BLOCKED. (you can see if you are "reply blocked" by looking at the end of the message. You can also call someone and ask them to message you via MyChart and NOT block replies.

The big flaw, is that generally, there is NO constant person you can ask for help. There are a lot of nice publications about your social worker, your case manager, etc, but usually NO WAY TO CONTACT THEM. More on case managers and social workers later.

We use this as much as possible.

Very frustrating some times, this underscores the need to have phone numbers for EVERY office you may have to contact.

2. Visits:

You need to be sure to check this regularly. Often you receive no other notice, and sometimes an upcoming visit disappears. (Not all parts of the UCSD system use Epic well, and some maintain their own scheduling system and often miss updating Epic), the urology dept, and Shiley eye institute often don't do well here.

You can see upcoming visits, and past visits.

Check your upcoming visits to see their status, that you have answered all questionnaires and confirmed. You will normally get notices to do this, but DO NOT RELY on the system letting you know.

Very important: The Past Visits have the doctor's notes and the after visit summary. Read this stuff. You normally are also handed a printout during visits, but read it, there could be recommendations you need to follow that you missed in the visit, and also check for wrong information/results.

3. Test Results

This is another thing you need to keep up on. Your doctor may be concentrating on a particular thing and miss results pointing to something else. Once you get a test result, notice the tab "Graph of Past Results", check that and you can see trends that your doctor may have missed.

There is a tab for Past Results, but it does not show the normal and high and low limits.

Do this every time you have a blood draw.

NOT AVAILABLE ON YOUR PHONE !!! (In fact don't use your dang phone except to check appointment times and show your Covid status)

4. Upcoming Tests & Procedures

This category really should be combined with Visits, since it can be very similar. It only has upcoming, since the results go in Test Results or Visits.

So, you need to check this too, as it shows upcoming things to do.

It's also where "orders" for tests like blood draws, mammograms are put, so you can see that something is authorized already.

5. Letters

Sometimes someone will send you a letter. This is a more formal communication from the hospital/doctors. You cannot reply AND notice that the system notes the day you viewed the letter, so you should read these, and check periodically, since they have "legally" delivered the "letter" to you.

Note: often this is overlooked, and some departments insist on sending "letters" where a message is more appropriate.

The Phone, not a great idea:

Yes, yes I have heard of "the phone". Looking at most online resources, they often give a very generic number, and most times you cannot ask for a person by name, and most times you leave a message. Why do I sound negative? Because there is NO RECORD of your call, or leaving a message. Also, often people call you back on their personal cell phones with no UCSD caller id. Come on UCSD! Use the system, it will save EVERYONE TIME!

Other things to check in MyChart on a regular basis:

Medications

Unfortunately, you, the patient need to be on top of this yourself. There are so many ways to have things screwed up it's amazing, and if you do not actively monitor and watch for warning signs, you will run out of medication or pay too much or BOTH!

Check the medication list

  • make sure it is correct, the dosage and the amount
  • Watch the prescriber's name. It should be one of your ACTIVE DOCTORS. If not, then when you request a refill, it may never happen. If it is not ascribed to one of your active doctors, then it may NEVER get refilled. Example: My wife had a prescription for low thyroid, it was prescribed by her doctor of 7 years. My wife went into the hospital with heart failure. Now the emergency/icu doctors review everything and re-issue the prescriptions. Well this prescription was prescribed by a doctor that was not one of her ACTIVE doctors. When she got out of the hospital, that non-active doctor's name was on the prescription, 3 refills of 90 days. Fast forward 9 months. Try to refill, and the pharmacy sent a message to this doctor.... NOTHING... 2 weeks later, nothing. So, I get on EPIC and request the refill and in the comments, mention the original doctor (who is active) too. NOTHING, it apparently sent the message to the same non-responding doctor.. A computer system without a soul. It forwarded the prescription request to this doctor who clearly did not respond in 2 weeks already. A system with no checks that things get done clearly. Now we are contacting our primary. Lesson learned, but the patient should NOT have to do this kind of legwork!
  • Often when you are in hospital, the team taking care of you screw around with other medications, often forgetting to give you medications for other issues they are not treating. You should be SURE to check your medication list before you discharge and after. While in the hospital, you can see you special pages for the in hospital care, and check the medications there, look for ones missing or deleted, get them to put them back!

Account information

Check this out, both my wife and I had the issue that the contact phone number was unverified. Mine took 6 months to fix and my wife's is STILL unverified after one year! Call the website support people, get a case number and call them weekly. Really screwed up.

Messaging / contacting your doctor (also called conversations)

Another huge nightmare! The best way in my opinion is the messaging system, because someone eventually sees it. If you have a fantastic doctor as we are blessed to have, they are on it, and his staff or even he himself answers.

But often you can get a smart-alec person telling you to go somewhere. The good thing is there is a record of the bad treatment. (The bad thing is even reporting it to the UCSD "customer service" office probably does nothing). But the message/conversation is documented, and if you do get into a pissing match, someone eventually notices at the doctor level. In my case the doctor still did not get it at all.

OK, so to send a message, you need to RECEIVE a message first, AND it must be sent without REPLY BLOCKED. I still feel this is the best way since it is documented.

Next best way, and the way you need to follow if you cannot message is to call the Doctor's assistant, but you need to find this person, and it is difficult.

MAKE A LIST of all the people and their contact numbers. Be aware often they give you some general number to the hospital, which is worthless, you need to get to at least the voicemail of the specific person.

See more on Phone Numbers below.

Know your phone numbers

Get every direct phone number you can get. Hospital operators are USUALLY just trying to get you off the line and into someone's voice mail.

UCSD La Jolla numbers

all numbers start with 858-657-xxxx

Sulpizio

  • 6700 - CVC 2 ICU –  actually on 2nd floor in Thornton bldg
  • 8260 - 2nd floor PTU - usually pre-op preparation / intake
  • 8330 - 3A ICU - rm 301-312 – 3rd floor
  • 8340 - 3B PCU - rm 313-327 – 3rd floor
  • 8410 - 4A PCU – rm 401-412 – 4th floor
  • 8420 - 4B PCU – rm 413-427 4th floor
  • 8246 - Heart failure pharmacist               
  • 8530 – main sulpizo – to cath lab, etc, usually worthless call
  • 5050 – LVAD & Transplant clinic - at 4520 executive drive not emergency
  • 619-543-6737 after hours ask for vad coordinator on call, be firm with the operator, several times they had no clue

Pulmonary

  • 855-355-5864 - general pulmonary
  • 619-543-5840 - interventional pulmonary
  • 619-543-7333 - pulmonary rehab
  • 844-757-5337 - sleep medicone
  • 858-657-7100 - PTE & CTEPH
  • 858-657-7073 - cystic fibrosis

Heart Transplant and VAD

  • 858-657-5050 - main number, can ask for transplant coordinator

 

cardiac rehab in Jacobs  858-249-1308 (1st floor by elevators)

 

scheduler - heart station - 858-657-8111

 

amanda topik -

Visiting at UCSD La Jolla

Layout and parking

What a mess! I will speak to the main complex. There are 2 "complexes", one at 9300 .... off genesse... follow the signs. There is a second complex just a bit further south, where you go for Urology, and a smaller circular loading area, and Urology is off in a different direction.

The main complex has a circular loading area, where you can valet your car. The valet parking is the same cost as the parking structure, so for most people

Getting in:

This requires following the rules:

  • To get on the list:
  • Currently only one visitor per day, and ICU has a 15 minute visitor limit (which is not enforced if you are nice and don't bug the nurses.)
  • First, for at least ICU, PCU, PTU (see meanings elsewhere) you MUST be on the visitors list.
    1. you must call the ward where your patient is, see the phone numbers below.
    2. you are supposed to talk to the Charge Nurse (see definitions below), but that can be tough
    3. Whoever you wind up with, have them put the visitor's name "on the list"
  • Supposedly after about 5 to 10 minutes later, the people at the entry will see you are on the list and let you in.

BUT!!!!

This breaks down all the time.... people don't put you on the list, the people at reception are untrained (quite often) and the list is ERASED every midnight (what idiocy!!!)

Also, there are shift changes at 7 am and 7 pm, anything done within 1/2 hour of those times is often screwed up.

So, when you go to visit, if you are not the spouse, then you need the spouse or caregiver available by phone to call the ward to "put you on the list"

There is NO external way to check "the list" except calling the ward. If it is ICU. PCU, PTU, or the ER, it's hard to get anything done.

UCSD Billing issue

This has happened to me 3 times, so you have to look out! I got a copy of a statement from a visit to my GP lately. Just using rough numbers for the example, the service was billed, medicare paid part, and the part left over was $140. The ORIGINAL bill shows this detail, and shows that the $140 is being sent to my supplemental provider, who will pay the rest of what medicare does not pay.

(for those not familiar with how this works, medicare will often pay 80% for a qualified procedure. Then supplemental insurance you obtain will pay the other 20%, net zero cost to you for medicare-covered procedures. If you are on medicare, tell your providers that in no circumstances should they do anything that medicare does not cover)

So back to the issue. the first bill comes in and says the 20% that medicare did not pay (after medicare covered 80%) was being sent to my supplemental insurance.

So far, so good, BUT!! I immediately get billing notices for the $140 on the web/phone app, in fact it pops up first, interfering with me using the app. Today I got a bill for it, and here is something to remember, after the first bill with the breakdown, ALL subsequent bills have NO DETAIL, and just say you owe $140.

That is bad, and I called up because I fell for this before, and yelled at the billing people. I asked why I was getting the bill, and she came back and said that my secondary insurance was not contacted.

How the hell does this happen? Since my insurance information is on a single web page and both medicare AND my supplemental show, and this seems to often happen at the same medical location, somehow it must be human error.

So the lesson is be vigilant! Check every bill/statement that comes in. Make a note if they say they are submitting the bill to the secondary insurance, and if you get something in the mail, raise hell immediately! Last time this happened I got a call from a collection agency. Shame on you UCSD and your lousy system!

 

Scripps La Jolla (Genessee)

 

Surgery Postop / Recovery 858-626-6187

Surgery Preop 858-626-6923

 

UCSD imaging

 How to get a scan (CT, MRI, ETC) into the UCSD data system.

Call the Perlman Digital Library people, 619-543-6586, often they can get the upload to the Epic system done in a few minutes. I talked to Rosa, fantastic help!

 

 

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