CHRONIC ILLNESS MANAGEMENT With Dr. Santa Maria

HANDOUTS-AVAILABLE ONLINE  Please visit group-handouts/ for more information. group-handouts/

DR. SANTA MARIA About  Board Certified Internist  Practicing for over 30 years  Specializes in patients with chronic illnesses and teaches prevention-based medicine  Switched his practice to concierge to help serve a smaller pool of patients with a greater need for continued care.

COMMON PROBLEMS FOR CHRONIC ILLNESS PATIENTS  Difficult finding a diagnosis  Tendency to bounce between multiple specialists  Declining health and cognitive dysfunction due to overwhelming symptoms and medications  Inability to recognize when a condition is out of control.  Feelings of shame or guilt for extended periods of illness

CONTINUED  A lack of support from family, friends or community because of misunderstanding  Difficulty maintaining work, education or social life due to symptoms  Overwhelming amounts of medical records, too difficult to communicate  Issues distinguishing what is and is not a medical emergency

HOW CAN YOU MAKE THE MOST OUT OF YOUR DOCTOR’S VISIT?  Prepare your questions ahead of time  Come prepared with your medical documents  Make an action plan (Separate slide)  When you leave: Do you understand what your prescribed tests/scans/exams are for?

MEDICAL RECORDS  What are your rights to them?  How can you retrieve them?  How can you keep them organized?  What programs are available to patients to use? What are their benefits?

MEDICATIONS WHAT SHOULD I ASK, WHO SHOULD I ASK?  What does this medication do? (Do you understand?) What is it being prescribed for?  Is it FDA approved?  How much will it cost? Will my insurance be likely to cover it?  What are the side effects?  How long will it take to start working?  Interaction Calculator: on WebMD  What medications does it interact with?  Is there a generic version? (Is there a difference?)  What is the next step of medication if this one does not have the desired effect?  If my doctor is unavailable and I have a question about medication where can I go?

CARING FOR A CHILD WITH CHRONIC ILLNESS  How to manage school and educational options.  How to advocate for your child in the doctor’s office and emergency room.  What resources are available to families?  How to build a support system.

SCHOOL AND CHRONIC ILLNESS  Students should have a 504/IEP (individualized educational plan)  Monitor school for compliance and care with chronic illness protocol  Communicate with child to help them utilize new support  Q: When should I consider alternative schooling options for my child with chronic illness?  A: Measure by days absent, if students hit the truancy mark, they should consider alternative schooling.  Alternative schooling includes online school, hospital homebound, expedited educational programs, and other home schooling.  Parental responsibility includes teaching a child independence and care of their disease—to promote empowerment and responsibility.

IS MY CHRONIC DISEASE UNDER CONTROL?  Do I know what my disease cycle is?  Do I truly understand my disease and prognosis?  Do I have someone else in my life who is able to understand and recognize my symptoms and know when it’s an emergency? Or when I cannot care for myself?  How often do I have a flare up? Vs. How often am I seeing my doctor?  Are all my medications having the full desired effect?  Is my diet or fatigue affecting my daily schedule?  Have I been confused or frustrated with what are usually simple tasks lately?  Am I taking all my medications regularly?  How often are flares interrupting school or work?  What could happen if I don’t treat my symptoms?

THE CHRONIC DISEASE CYCLE Fatigue can lead to lack of exercise can lead to muscular atrophy can lead to pain can lead to mutliple medications can lead to

MULTIPLE CHRONIC ILLNESSES  Having one chronic disease may ultimately leads to a second chronic disease.  Be aware of a change in symptoms to indicate a second illness.  Be vigilant about regular exams and tests.  Know what is “your normal” and “your abnormal” and FOLLOW YOUR INSTINCT.  Be aggressive.  It’s better to be safe than to suffer.

DISADVANTAGES OF CURRENT HEALTHCARE SYSTEM FOR CHRONICALLY ILL PATIENTS  Lack of management and multiple specialists lead to inconsistency in treatment, repeated exams, and medical error.  Fear or embarrassment of contacting your physician over the phone or lacking access to your physician's guidance leads to more ER visits, confusion, and mismanagement of treatment.  Miscommunication due to rushed appointments or doctor’s unfamiliar with your current treatment plan can lead to medical error.

HANDOUTS-AVAILABLE ONLINE  Please visit group-handouts/ for more information. group-handouts/