MS Nursing: A Global Success Story Linda Morgante, RN,MSN,MSCN, CRRN Director of Clinical Services Maimonides MS Care Center Brooklyn, NY

Multiple Sclerosis results in... Physical and functional changes Emotional and social consequences Changes in self-image and sexuality Financial loss and vocational instability Societal stigma & environmental challenges Uncertainty

The World of Multiple Sclerosis Episodic Care Supportive Management Diagnose and “adios” Palliative Measures Symptomatic Intervention MRI and “goodbye” Disease Modification Clinical Trials Advanced Technology Wellspring of Hope Evolution in MS Treatment

A New Vision of Multiple Sclerosis During the past decade, a greater understanding of multiple sclerosis has emerged New therapies have modified the disease course and changed the vision of the disease What has emerged is a philosophy embracing action (early intervention), hope (I can do something about it), and empowerment

A New Philosophy of MS Care Acute, symptomatic, sustained, and rehabilitative care remain the mainstays of care A wellness approach incorporates other systems of care (primary services, preventive measures, a focus on education) The MS Team may be found in MS Centers, in private practices, and in “Centers without Walls”

The MS Team Neurologists, physiatrists, specialists, PMDs Nurses, NPs, Medical Assistants, PAs Rehabilitation Specialists (PT, OT, SLP) Counselors (social workers, psychologists, neuropsychologists, voc rehab, clergy) Patient Advocates/Case Managers THE PATIENT AND FAMILY/PARTNERS

The MS Nurse The Multiple Sclerosis Nurse has emerged as a pivotal player in the MS team S/he frequently is involved in many aspects of care either directly or indirectly

The Many Hats Worn By MS Nurses Care provider Educator Facilitator Counselor Case manager Advocate Researcher

Evolution of MS Nursing Care Acute Care Advanced Practice Primary Care Specialist Care Rehab. Care International Organization of MS Nurses MS Research Home Care Long-Term Care MS Center Care

Nursing Care in Multiple Sclerosis Requires... Creativity Caring Empathy Hope Lots of Stamina

What is an MS Nurse A competent expert who collaborates with those affected by MS and shares knowledge, strength, and hope. He/she empowers people to cope, and inspires a spirit of optimism about living with this lifelong illness.

MS Nursing Philosophy Nurses care for people with MS throughout the spectrum of the illness, and respond with expert knowledge, skills, empathy, and hope. Nurses empower people by facilitating treatments, managing symptoms, promoting maximal function, and supporting a wellness- focused quality of life.

Mission of the IOMSN The IOMSN was established to ensure that a specialized branch of nursing in MS will continue to grow, and flourish. The organization hopes to establish standards of nursing care in MS, support MS nursing research, educate the health care community about MS, and disseminate this knowledge throughout the world.

Mission of the IOMSN The ultimate goal of the IOMSN is to improve the lives of all those persons affected by MS through the provision of appropriate healthcare services. From the bylaws of the IOMSN

IOMSN The International Organization of MS Nurses was founded in 1997 in Calgary, Alberta, Canada. The organization welcomes individual and affiliate members. To date, there are over 700 members from around the globe.

Benefits of IOMSN membership Access to current information regarding best practices in MS nursing Education materials for health care professionals and patients Internet access for professional information and correspondence to nurse experts Mentorship

Benefits of membership (cont) Scholarships which are available for research, educational opportunities, and attendance at conferences Opportunities for international networking and joint meetings Newsletter Speaker training

Credentialing In 2001, an international board was established to develop and define the domains of MS nursing. An exam to credential MS nurses was developed to capture the global commonalties within the field.

MS Nursing Domains Clinical Practice Advocacy Education Research

Clinical Practice The care and nurturing nurses provide for the physical, emotional, social, and spiritual dimensions of the patient and family The tasks that we do every day: injection trainings, infusions, bladder care, bowel care, etc.

Clinical Practice Establish a partnership Perform a comprehensive assessment Formulate a collaborative treatment plan Initiate and facilitate a treatment regimen Monitor outcomes Sustain therapeutic alliances

Education Increasing patient’s and family’s understanding of MS and how it affects each person Informing patients about treatment strategies and the need for self-responsibility Providing information about programs, services, and relevant resources

Education (cont) Teaching and improving self-care skills (ie: self-injection, nutrition, fatigue and spasticity management) Encouraging patients to maintain an active, wellness-oriented lifestyle Fostering productivity Encouraging informed decisions

Advocacy Increasing access to services, programs, and entitlements Networking with community agencies and legislators Facilitating public awareness of the needs in MS Assisting patients with complex entitlements

Nursing Research Many questions come from clinical practice and require validation. Some of the areas MS nurses have studied include: Adherence to injectable therapies: Self- efficacy The Lived Experience: Relapsing/remitting MS Women’s Issues: osteoporosis

The exam There are 150 questions Designed for a nurse who has worked in MS for 2 years The majority of questions are related to clinical practice Can get 41 questions wrong, and still pass

Certification There are more than 300 certified MS nurses (MSCN) in world!!

Future Directions of Care in Multiple Sclerosis Long-term options (housing, day programs) Increased focus on MS in the neurologic community Comprehensive care programs Managed care centers Improved access to rehabilitation programs Networks of care (CMSC, RIMS, IOMSN)

Future Directions For MS Nursing Continue global educational efforts (IOMSN) Implement creative nursing measures to insure patient’s health and promote healing Validate what we do through nursing research Continue to credential MS nurses Take care of ourselves, and one another