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Sickle Cell Patient Care

Sickle Cell at Points of Care

These questions are designed to explore the level of care Sickle Cell patients have recieved at points of care such as, the hospital, ER/ED, infusion centers and doctors office.

In addition, we would like to know about individual experiences with Sickle Cell Abuse as it is defined here: Sickle Cell Abuse is the refusal of care for a Sickle Cell Patient usually by-but not limited to- those in Healthcare. The neglect is usually for arbitrary- reasons, stigmas, racial bias- that is usually rooted in miseducation, instead of science-based care, Patient knowledge or experience. #STOPSICKLECELLABUSE
1.Are you a Sickle Cell patient or Caregiver(Required.)
2.What is your primary relationship with the Sickle Cell Patient you care for?
3.When in a Sickle Cell crisis, where is the primary place you go to seek care?(Required.)
4.Do you feel you (or your patient), are meet with kindness, courtesy, and respect when seeking care?(Required.)
5.Do you feel that the medical staff at your (or your patients) point of care, treat you (or your patient) to the best of their abilities? By utilizing all of the resources the facility, their education and patient experience offer them?(Required.)
6.Do you feel that you often have more knowledge about your illness (you patients Illness) than the medical staff caring for you?(Required.)
7.How often is your personal patient knowledge and suggestions for care utilized by the doctor caring for you or your patient?(Required.)
8.How often do feel that the ER doctor or Hospitalists caring for you has an extensive education and understanding of Sickle Cell Disease?(Required.)
9.Have you ever been in a position where you've felt that you and your doctor, worked as a team to ensure you (or your patient) got the best care possible?(Required.)
10.How often have felt that you or your patient were given adequate support from hospital administration when encountering mediocre care, bias staff or simply uneducated doctors and nurses charged with your care?(Required.)