Advocating for Our Patients: Implementation of Multiple Sclerosis Educational Programs to Optimize the Healthcare Experience of MS Patients

Thursday, May 29, 2014
Trinity Exhibit Hall
Amanda S. Farag, MD , Multiple Sclerosis Center of Excellence--East, NJ Region, VA New Jersey Healthcare System, East Orange, NJ
Carol Gibson-Gill, MD , Multiple Sclerosis Center of Excellence--East, NJ Region, VA New Jersey Healthcare System, East Orange, NJ
Sharon Tanks, RN, MPA , Multiple Sclerosis Center of Excellence--East, NJ Region, VA New Jersey Healthcare System, East Orange, NJ

Background: Healthcare providers for patients with Multiple Sclerosis (MS) are the clinicians that are most knowledgeable as to the distinctive needs that come with living with this complex chronic disease. They are oftentimes the primary advocate for the patient’s healthcare and community accessibility. However, MS patients encounter many other medical disciplines (including nurses, physicians, pharmacists, social workers, etc) as well as non-clinicians while maneuvering the healthcare system.  Often, non-MS specialists have very little experience in dealing with MS and so have little knowledge as to the unique challenges posed by this chronic disease.  

Objectives: To educate non MS specialists in order to optimize their interactions with MS patients with varying levels of disability and provide these patients with comprehensive quality healthcare.

Methods: The MS Center of Excellence (MSCOE) at the VA New Jersey Healthcare System has established several educational programs designed to educate non-MS specialists about caring for patients with MS .

Results: One of the programs was a viewing of a one hour documentary film in which a patient with MS had a video camera mounted to her wheelchair and was able to educate viewers about life in a wheelchair and the daily but little known struggles that she and other patients face regularly.   There were 124 people that attended the event including 42 physicians, 29 nurses and 18 medical students.  Other disciplines that were represented included hospital volunteers, pharmacy, social workers, chaplains, physical therapy, respiratory therapy as well as the chief of staff’s office and hospital director.  The audience was given a pre and post anonymous survey and feedback indicated that after watching the documentary, viewers more strongly felt that accessibility issues affecting those with disabilities are not adequately addressed in the USA and that they developed a better understanding of the needs of a person living with MS beyond the fact that they have difficulty walking.   Another program involved having a speaker provide education on addressing cognitive and affective issues in MS.  This event had 104 in attendance and had providers call in from five other VA sites to participate.  In addition to 46 physicians and 22 nurses that attended, non-clinical hospital staff from medical administration services, research, facility management, guest relations and food and nutrition services also attended the event and everyone provided positive feedback that it was invaluable to understanding the unique issues of MS.

Conclusions: MS healthcare specialists are in a unique position in understanding the needs of MS patients and their caregivers and should continue to find creative means to educate other non-MS specialists and advocate for our patients in order to help our patients live healthy, fruitful, independent lives.