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Been to an Epilepsy Monitoring Unit? What’s it like?
Epilepsy & Seizures | Last Active: Jan 24, 2023 | Replies (42)Comment receiving replies
Hi all,
Thank you for taking part in the survey and open discussion about your experiences with epilepsy monitoring at Mayo Clinic and other institutions. The Patient Experience Nursing Team interviewed 12 hospitalized patients and sought input from you, members of the Epilepsy group on Mayo Clinic
Connect, asking:
- "What is your greatest fear in being here?"
- "What was your greatest need in the hospital?"
- "What would have made you more comfortable?"
From the feedback and insights you provided the Patient Experience Nursing Team developed a quick guide for nurses in the Epilepsy Monitoring Unit at Mayo Clinic. Following this guide will encourage communication to help make patients feel more comfortable, safe and confident while being monitored. The guide identifies three areas of concern: 1) anxiety and fear, 2) a loss of control, and 3) a loss of independence.
The team then developed strategies to address the concerns, such as:
- Asking patients about their fears, validating these fears and addressing them during rounding
- Communicating with empathy
- Discussing the lack of privacy and offering options, where possible
Communication, particularly empathetic communication, is vital. Your input helped underline the concerns and needs that patients in the epilepsy monitoring unit commonly have and how they can be addressed.
THANK YOU!
Replies to "Hi all, Thank you for taking part in the survey and open discussion about your experiences..."
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I was in an EMU at another facility in September of this year.
My fears were lack of independence... having to wait to have a nurse or an aide take you to the bathroom. Not being able to even be up in my room by myself. Being in bed constantly.
Comfort would have been better beds. They were awful even though they were new. When in an up position, I could feel the metal on my tailbone. I have been home since September 28th and I still cannot sit normally because it hurts. I have to sit on one cheek and not put full weight on my tailbone.
I think withdrawal should have been explained to me. I was on Keppra, Vimpat and Klonopin. I was taken off all three. I was in the hospital eight days and went through withdrawal from these meds. Nobody warned me and it was horrible. I asked for something to stop the withdrawal but was not given anything.