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Keeping track of multiple doctors

iwillsurvive9
Posts: 1
Joined: Jan 2013

new to the forum and wondering. How many folks have a relative who’s recently fallen ill and now have multiple doctors and providers? Any one having a hard time keeping track of all the care going on?

Noellesmom
Posts: 1306
Joined: Aug 2010

With my mom, my sisters and I decided that the same person had to accompany Mom to every single appointment possible for the sake of continuity with the doctors and so that there was a person who was familiar with every aspect of her care.  Turned out to be me and it was the best decision for her health care we ever made.

I asked questions and took notes and not one of her many doctors minded a bit.  As soon as we left the appointments I made phone calls to both of my two sisters and reported on what had occurred. 

It is not easy but it is necessary.

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I request copies of all doctor, nurse, medical assistant notes. I used to keep them in heavy duty folders, but I have now gone to a three ring binder system. For example, I keep the neurologist and psychiatrist together in one binder. I have one binder that I keep all information from any physical or occupational therapy I have. If I have more than one subject in the binder, I separate them by those separators they make.

Doctors make mistakes, and getting the notes and reviewing them is very important. I was behind in getting the neurologist notes from April 2012. The notes state that I was told I have a vitamin D deficiency and was given supplements and was dismissed. THE NEUOROLOGIST NOR ANY OF HIS STAFF TOLD ME OF THIS. So I have had a Vitamin D deficiency for 10 months (the lab test was done in March of 2012).

If the doctor's have any information regarding tests, labs, medicines or  supplements, I have them write it out for me before I leave the office. This is how I know that I was NOT told about the Vitamin D deficiency. I was told that my Vitamin E levels were too high and stopped that supplement.

ketziah35
Posts: 1150
Joined: Jun 2010

We took notes in a day planner and had appoimtments in there too. Had a a portable accordion folder to keep paperwork in. One slept for each doctor or specialist with the most recent paperwork at the front 

ketziah35
Posts: 1150
Joined: Jun 2010

We took notes in a day planner and had appoimtments in there too. Had a a portable accordion folder to keep paperwork in. One slept for each doctor or specialist with the most recent paperwork at the front 

LHM63
Posts: 2
Joined: Jan 2013

 There are very helpful suggestions on the site  cancer.org  that I have used. When you go on there click on the heading of 'Find Support & Treatment'. You'll see, 'What you need to know a cancer caregiver' . You can download the pdf. Also, go to irs.gov to find 'medcial expense deductions'. Print this out & use as a guide for what you can claim on your income tax. I have marked on the calendar the mileage every time we go to the dr's, pharmacy or testing facility (can only claim one way though). Once you have a system in place it makes things much less stressful. Sometimes though I only have enough time, or energy, to just stick my receipts in large (legal pad size) envelopes that I have marked with titles like prescriptions, receipts or tests. My husband has gastric non-Hodgkins lymphoma Stage IVb. So far he needs 3 different oncology specialists, a gastric surgeon, plus an oncology nutrionist, social worker and needs visits from an infusion nurse.  Luckily I am disaabled so this is my full time job. I had been a medical lab technologist in blood bank and immunolgy , as such I had to be highly organized. I had no idea all those years I worked that I was really preparing for this. Hope this helps ~

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

My most important recommendation is to make sure that doctors are sharing information among themselves to ensure that each is familiar with what the others are doing, saying, and prescribing.

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

My most important recommendation is to make sure that doctors are sharing information among themselves to ensure that each is familiar with what the others are doing, saying, and prescribing.

Petie
Posts: 16
Joined: Feb 2013

Spread sheets on the meds; one for every 24 hour period when there's alot to oversee. Calendar for appts, one person to oversee and delegate accompanyment. Binder w/ extra lined blank paper to take notes on-whoever goes to the Doc takes notes - date 'em and include weight of patient, and a three-hole puncher to log all visits, hospital discharges, path reports in order from recent (at the front) to later (at the back) in said binder. Then any family member can refer to it at any time.  Doc emergency #s w/ sticky note on front of folder. Have heard that American Cancer Society lately will mail you a packet (excluding hole punch) to help with it all, but have only heard not substantiated. Organization is key; no great historical Battlefield was ever won without stellar oprganization. Dumb luck gets you no-where. Stock up on sticky notes.

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

Hi. All of these posts are terrific guidance. Two more tidbits:

1. If you contact the American Cancer Society at 1-227-2345, you can ask for their Personal Health Manager. I believe that's the name of the package that Petie was talking about. Their information specialists are available 24/7 and are multi-lingual.

2. Make a list of questions for each doctor in advance, and don't hesitate to ask if you can record the conversation, so you can go back to listen more closely. Some caregivers have found it very useful to go back, whether it's to hear the name of a condition or a medication more clearly or to re-visit what the doctor said about next steps or prognosis.

 

Good luck.

mitchellmorse
Posts: 1
Joined: May 2013

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