EducationSuperficial Siderosis

Tips For Improved Patient-Physician Communication

Patient to Physician Communication a two-way street

Quite often, patients with a rare condition experience a variety of complex symptoms. Do not let an appointment with your doctor leave you feeling as confused. Healthcare providers are constantly under pressure to keep patient face time to a minimum, so clear communication is a vital step in understanding your plan of care.

Memory Problems

Your doctor needs accurate information to help you. It’s essential patients with short-term memory problems or mild cognitive impairment pre-plan for what they need or expect to learn during their appointment. Gary keeps a small daily notebook that records his vitals, notes about medication or symptom changes, fluctuations in blood pressure, pain levels, and new questions. Without this daily health diary, he is unable to remember the crucial details. Whether an appointment is a few months down the road or tomorrow, you will constantly want answers for questions but forget to ask.

Staying on Track

He brings his notebook to every regular office or hospital visit. Physicians find details of problems with dates and times very helpful. It also helps Gary recall a short story of events leading up to a specific incident. For example, I was doing my usual ____ late in the afternoon, and then I was doing ____ when I started to feel______. A detailed explanation is more helpful than My ______hurts. By keeping it brief, you can keep your face-to-face time with your provider on track.

We saw first-hand during an appointment with his sleep doctor. Gary had been rotating through many different APAP masks while trying to find one that would work for him. He searched his diary for answers as the doctor was reviewing specific incidents on his APAP recordings.

Your Physician Isn’t A Mind Reader

Unless you speak up, providers can only assume you understood everything they discussed during your visit. How often have you just smiled and shook your head in agreement? Don’t allow embarrassment to stop you from asking someone to repeat information as many times as necessary. If you don’t, you will return home frustrated and angry because you missed valuable information.

When you visit your healthcare provider, you need to practice practical communication skills. For example, try remembering one word before every appointment, ANSWER.

Allow a few moments at the end of your visit for questions.

Note that you require written information about your symptom or condition

Suggest you would like clear written instructions regarding what steps to take if your condition worsens

Write down all the medical terms, names, and words that describe your condition

Explain things to you in easy to understand words

Repeat any information or terminology you don’t understand

If your healthcare team can become familiar with your specific communication needs, I think you’ll find they will appreciate a better understanding of your problems and concerns. In addition, you benefit by becoming an active and informed participant in your plan of care.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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One Comment

  1. I was diagnosed last year 10/2023. I was sent to several physicians that knew nothing about my condition. But the most frustrating part is not getting any help from any of the physicians office’s. I’ve had to search the internet and call drs to find they no longer practice in the officthat are listed. I finally found Dr. Levy. I now have to have my PCP send a prior authorization to my insurance-Humana. One person I’ve talked to indicated that they went through the prior authorization process and they were denied. If that’s the case what is the next steps? This says you guys be advocates! Some suggestions or any help would be so helpful 

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