overwhelming at times, especially when attempting to navigate a maze-like healthcare system. It is important to know how to self-advocate by knowing your rights and responsibilities, speaking up for your rights, and making choices and decisions that affect your health

1. Self-AdvocacyinLupus
Sarah Stothers, RN, BS
National Nurse Health Educator
Lupus Foundation of America

2.  2 types of patients
- Passive
- Active
 Taboo culture: society teaches us to respect
authority. We view doctors as experts and that
they know everything. Therefore, who are we to
question them?
Background

3.  Educate yourself-what do you need or want to
know?
 Learn about your illness!
- CDC.gov
- NIH.gov
- Nonprofit organizations (lupus.org)
 Be familiar with your insurance
 Learn about current lupus treatments
 Learn about clinical trials
 Plan for the coming year
Step1:Beinformed

4.  Patient’s Bill of Rights
 Prior to discharge
- Assemble your health care team
Knowyourrights!

5.  Doctors appointments can be overwhelming!
ASK
BE PREPARED
COMMUNICATE
KnowyourABCs!

6.  List of top 10 Questions (prioritize)
 List of all medications
 Folder of past medical history (if needed)
 Printed material on illness and/or clinical trial
info
 Bring a listening ear
 Bring a notebook to jot down notes
 Signs/Symptoms journal
Step2:Comeprepared

7. Date Symptom/Sign What triggered the
sign/symptom?
• Did you do or take
anything to ease
the symptom?
• What did you do
or take?
• Did it work?
Did the
sign/symptom go
away? (Specific
date)
12/4/15 Rash- on arms
neck and chest.
Red, bumpy…
Did yard work in the
sun.
I put aloe on the rash,
but symptoms did not
go away
12/13/15 rash is
lighter, but still
present.
Samplejournal

8.  Communication is key
 Communicate your priorities for your health
 Ask your questions
 You have the right to change doctors if you do
not feel like you are being heard
 You have the right to seek a second opinion
 You should feel comfortable with all treatments
3.Communicate

9.  Ask doctor to speak slowly or in basic terms, if necessary
 Bring a companion that you trust
 Ask questions!
- Are there any side effects associated with my medications?
- What should I expect until my next visit?
- What should I do if I experience a flare?
 At the end of the visit, summarize your plan of care and
next steps
 Be patient and courteous during all interactions
Tipsforfacilitatinggood
communication:

10.  Create your own medical file
- Copies of medical records, lab tests, medications (past and
present)
 List of all medications
 Keep a list of doctors that you see
Include:
- Name
- Specialty
- Telephone number or other
Recommendations
Name Specialty Contact Info.
Dr. John Doe Rheumatology 123-345-6789
Dr. Jane Smith Cardiology 777-123-4567
method of contact

11.  Be informed
- ABCs
 Come prepared
 Communicate
 Maintain your own medical file
 Remember to be patient and courteous
Summary