Sharing Information with your Epilepsy Care Team

Recently we have had a variety of articles about different types of treatments including new seizure medicines, surgery, devices, and diets. The next questions for many people are ‘What do I do with this information?’ ‘What if my doctor or health care professional doesn’t talk about these treatments with me?’ ‘What do I do next?’

Look at your role on the health care team. The traditional approach to medical care is that the patient answers questions, and the doctor or other health care professional recommends the treatment. However, patient-centered and self-management approaches to health care stress the central role of the patient and family on the health care team. These approaches are very important when people are coping with a health problem over time. Keep in mind that epilepsy is often ‘invisible’ to the health care providers - the seizures and other problems can’t be easily seen or diagnosed during an office visit. Special testing may be needed to record seizures and find the best ways of treating them.

You, the person with epilepsy and family members, are central to what is going on.You bring the information to your doctor about what the seizures are like, what people see or don’t see, how often they occur, and how they affect your life. Youmust know how to take the medicines at home, follow a certain diet, make lifestyle changes or go through the process for surgery or other treatments. The people on your health care team should have latest information about epilepsy to help you, and be able to recommend what they think is best, given your individual situation.Together, you work towards your goals. Does your health care team work like this?

Don’t be afraid to ask questions. People work together best when they know what to expect from each other. Learn to ask questions about your role, your doctor’s role, and what to expect from each other. Learn how to talk about new ideas or treatments, other people who should be part of your team, and other concerns you may have. Some of these questions should be discussed early on in your treatment. However, your doctor may not be able to answer whether new treatments are appropriate for you until he or she gets to know you and finds out more about your seizures. These types of discussions often take time and you may need to set up special appointments to talk about these.

Bottom Line – what does this mean?

People with epilepsy and their families should be the central people in their health care. A whole team approach is needed – primary care, neurology and epilepsy specialists, mental health, and other community providers. The team needs to work together to gather information, explore options, and coordinate treatment to help you reach your goals.

Everyone needs to feel comfortable asking questions and sharing information. As you read these newsletters, some of the articles may raise questions for you. Print them out to remind you to talk to your team about your concerns. Gathering information and learning about options is only one step however. In future columns, we’ll talk about setting priorities, learning skills, and finding help to manage your epilepsy.