How I Manage My Healthcare Team

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by Lelainia Lloyd |

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As a rare disease patient with neuromyelitis optica and comorbidities, my medical care is complicated. I have an extensive healthcare team that includes:

  • a family doctor
  • a neurologist and neuro nurses
  • a rheumatologist
  • three pharmacists
  • a home infusion nurse
  • an immunologist
  • three endocrinologists
  • a physiatrist
  • a gastroenterologist
  • hospital infusion nurses
  • a neuro-ophthalmologist
  • an ophthalmologist
  • a dermatologist
  • an ear, nose, and throat specialist
  • an audiologist
  • a hematologist
  • a physiotherapist
  • an occupational therapist
  • blood lab techs

Managing such a large healthcare team spread out across two regions can be overwhelming. However, I’ve figured out a few ways to make things easier on myself.

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My first step was to create a medications list. I created a document that lists each of my medications, the dosage, and what I take the medication for. I also include a list of my drug allergies. My medications are quite fluid — the drugs and dosages are constantly being adjusted or changed. With this document, I can easily go in and update the list as needed, and I always note the date of each update for future reference.

In addition to my medications list, before each specialist appointment, I sit down and write a synopsis of which doctors I’ve seen since my last appointment, what we discussed, which tests were ordered, what the results were, any referrals they made, and when I will see them again. This helps everyone on my team stay in the loop, and avoids any duplicated tests or referrals.

The day before an appointment with a team member, I print off copies of both lists and put them in my purse so I don’t forget to take them with me. Not only do these lists give my specialists the most current information about my healthcare, but they also allow my appointments to be more productive.

Doctors can quickly skim the information and ask any questions they may have. It eases their need for note taking, so they can really listen to what I’m saying. They know that if I forget to mention anything during our appointment, it will be in the notes I’ve just given them. It’s easy for their office team to scan the information I’ve given them right into my file, and often they make their own notes right on my documents.

Having these documents at my disposal has also been helpful for me. I’ve often been glad that I have my own written records to refer back to when needed.

When I first started handling my appointments this way, members of my care team were surprised by the level of organization and information I was sharing with them. Often they would ask for permission to photocopy the documents, thinking they had to give them back to me. I’d get a big smile and a thank you when I explained that the copy I’d given them was theirs to keep for their records. Each of them has said how helpful it is, and that they wished all their patients were able to do this.

There are so many aspects of living with rare disease and chronic illness that are unpredictable and out of my control, but taking ownership of the way in which my health information is communicated and shared helps me manage it more effectively. I feel that creating this system has strengthened my partnership with my care team and improved the care I receive.


Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.


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