Developing a Health Passport: A Guide for Navigating Health Care Stephanie Mulkey Educational Seminar    Pat Corley RN September 8, 2016

Goal: Empower people living with Sickle Cell Disease by promoting independence and self sufficiency through education.

Stigmatize Label as socially undesirable or unacceptable. “ A lot of nurses and health care professionals in general have preconceived, erroneous ideas that sickle cell disease patients are just drug seekers.” In reality, these patients are hurting, and it’s often up to nurses to make sure they receive the pain control and disease management care they urgently need.” Bonnye Johnson MSN University of Illinois

3 C’s directed at managing Health Care Communicating -Learn how to talk with Health Care Providers - making a formal complaint in writing Familiarize yourself with your Health Care Facility and chain of command. - Learn to file a formal complaint

Comprehending/Understanding your condition and the health care system - Education is the key to managing your sickle cell condition! understanding your disease and available Familiarize yourself with your condition treatments/resources. Knowledge

Controlling your life and care study and know your body and as it relates to your medical condition.

Always request that your PMD be involved with and informed about care proposed and rendered to you. - Identify the Hospital where you will receive your care. Try to avoid using multiple hospitals and Doctors. Attitude is important

Health Passport Information (1) Identifying demographics Medical diagnosis and history inclusive of complications your normal lab values and Blood transfusion Record Insurance information Health Directives Medical Record Number Advocates information (Name, phone number , address of person to be contacted)

Health Passport Information (2) Current medications and important medications your are no taking Allergies or side effects to medications Names of prescribed medications (Prescriptions bottles or list of medications) including amounts/dosage frequency and mode . PMD’s treatment plan for managing your painful episodes both outpatient and inpatient .

Health Passport Information (3) Your Pain Diary or Journal Pain Contract Usual Pattern of Pain Notebook with Health Information including prior discharge papers

Pain Considerations Assessment of your pain experience past and present Knowledge of Pain Descriptors Report your pain accurately using descriptors which paint a vivid and colorful picture Understand your treatment Options - Difference between opiod use versus misuse - addiction versus dependence -Role of non-o piod and adjuvant like local anesthetics complementary and alternative therapies Non-pharmacological treatments

Pain Considerations Limitations of pharmacological and non- pharmacological pain management modalities Equianalgesia doses Familiarize yourself with the Patient’s Pain Bill of Rig Importance of matching drug use to pain intensity Side effects vs allergic and tolerance Use of pca as an inpatient Overall safety

Conclusion: Use your passport for a better healthcare encounter