Follow an epilepsy nurse case manager around for a day and you’ll see I split my day between empowering epilepsy patients to take charge of their lives and coordinating diagnostic procedures, treatment and clinic appointments for patients with specialty healthcare providers. Every single call is extremely important and prioritizing is a challenge I gladly accept.
Often times I am one of few people a patient with epilepsy can turn to for emotional support. They may not have many people in their life they can talk to about seizures. I listen to their fears about having seizures in public or losing control of their bowel or bladder and respond to them with encouragement and possible solutions. Answering questions about epilepsy, seizures, first aid and medications and informing them of reputable places they can go to for educational material for their condition usually leads them to feel more confident and over time, their fears subside. Sharing the facts about epilepsy and dispelling myths about the disease enables each patient to fully understand their condition and live the fullest possible life, despite their challenges. I find this part of my job is helpful in educating hospital staff and new nurses as well.
Perhaps the most important topic I educate patients about is taking their medications. Medications are extremely important to individuals with epilepsy. If they don’t take their medications and the blood level falls too low they may have a seizure, possibly causing a huge disruption in their lives. I urge patients to communicate their medication needs to me so I can assist them by talking with their pharmacy, insurance company, medication assistance programs and drug companies.
Coordinating diagnostic tests for each patient helps provide important information about the type of seizure they are experiencing. Tests such as video electroencephalography (EEG) monitoring, lab work, magnetic resonance imaging (MRI), and magnetoencephalography (MEG) scans help doctors provide appropriate treatment. The Wada procedure is the most difficult to coordinate. Most epilepsy patients considering surgery undergo a Wada test. A Wada test is generally a safe procedure that looks at language and memory on one side of the brain at a time and requires the epileptologist, neurosurgeon, neuropsychologist, a free operating room and the patient to all be available on the same day at the same time.
Overall, an epilepsy nurse case manager acts as liaison between patients, their families and healthcare providers to ensure efficient and prompt healthcare services. We assess patients’ needs and the effectiveness of the care that patients receive. I often put myself in their shoes and ask myself, “What if I had a seizure? What if there was a chance that I could lose my job or my driver’s license? Could I hurt myself or hurt someone else?” This technique helps me communicate with my patients on a level which I hope they find comforting.