Coordinating Medical Care

by | May 8, 2023 | General | 0 comments

Finding the appropriate medical care for multiple conditions is a challenge. In each blog posts outlining a medical condition, I try to link to the corresponding foundation or society. They can often direct us to physician resources, but even if we find a physician, the biggest challenge is coordinating all your care.

In theory, our primary care provider would be able to coordinate our care. Since many of us have rare diseases, as well as co-morbid conditions that are just not well known, this task is difficult for many primary care providers who are already overstretched.

I spent several years as an RN working in a trauma center filled with all specialties. I learned very early on that medicine often practices in silos and these specialties do not necessarily interact with each other. It occurs even more so in outpatient settings.

As you can see from my diagram, I have quite a few specialists and even more not listed. They are not in the same health systems, or even the same states. There is no cross talk amongst them. When we are so complex, it’s important that our physicians understand at least the basics from other specialty areas.

This is what I have learned to be helpful, not take a lot of the providers time, but keep them informed. I carry an updated medication and supplement list and on that list are all my allergies (I have a lot). I also add each diagnosis and surgery with year. It’s a one pager that I can update in Word and make multiple copies.

I also give each physician a list of all my specialists with contact info and ask them to include them in their reports, if pertinent to their field. If they do not think it’s necessary, I ask they at least include my primary. Then I ask her for a copy and make multiple copies for all my other specialists.

Lastly, one of the most important tips when seeing a physician is making your list of five. These are the top five concerns you want addressed at that appointment. We all know that physicians are on tight time frames, so choose in advance the most critical issues to be discussed. Then ask how they would like to be contacted in between appointments if other questions come up before your next appointment. Portal, phone call to office, email

Remember also, that physicians work for us. If you are not being treated well, move on. Ask other patients, friends, family, online communities, who they are happy seeing as their providers. We must advocate for ourselves… always.

 About Author Jan Hempstead

My name is Jan Hempstead and I’m an RN, although I medically retired sooner than I would have liked because of my multiple diagnoses. I’m also a mom, wife, sister and friend.

This blog is my story about living well with Ehlers Danlos syndrome (EDS), rheumatoid arthritis (RA), mast cell activation syndrome (MCAS), chronic kidney disease (CKD), hereditary alpha tryptasemia (HaT), dysautonomia and Sjogren’s Syndrome (SS).

I started out with EDS and one by one, another diagnosis kept getting added on. Come follow me as I share my journey with multiple specialists, what has worked and has not, and where I’m going next.

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