MS Comprehensive Care Center Personnel Support
National MS Society, New York City Chapter
Ruth Brenner
1 year grant, $20,000
Multiple sclerosis is a complex disease; not just because scientists believe there are many pieces that come together to trigger MS, but because symptoms vary widely from person to person, as does severity and timing of symptoms. Clinicians treating MS manage not only the disease, but its symptoms that can range from numbness and tingling in the hands and feet, to extreme fatigue, loss of mobility, and cognitive dysfunction. The New York City Chapter of the National MS Society firmly believes that a comprehensive care model helps patients better manage the disease and cope with its ramifications. To do this, a nurse practitioner specializing in MS and acting as a care coordinator, and a social worker, knowledgeable in the services available to people living with MS, are critical.
The New York City Chapter funds nurses and social workers at eight Comprehensive MS Care Centers throughout New York City. The centers provide patients with specialized services including diagnosis, disease management, therapeutic care, education, counseling, and physical, occupational and speech therapy. In addition, patients have the opportunity to be seen by a team of specialists with strong expertise in multiple sclerosis. Patients who attend a comprehensive care center are offered access to the most current information about MS treatment initiatives, including the availability of clinical trials in the New York City area.
All told, the chapter ensures that trained nurses and social workers are available, based on the center’s patient volume, from one to five days per week. Centers must maintain agreed-to standards of affiliation in order to be supported by the chapter and strict evaluations are done periodically to assure that the standards are being met.
In addition to providing financial support, the chapter creates learning and networking opportunities for the care center nurse and social worker staff. Centers are visited at least once per year by the chapter’s program directors of clinical and counseling services and the center directors are visited once by the chapter president and vice president of programs and services. In addition, communication occurs weekly or biweekly via phone, mail or email and new nurse and social work staff are oriented and mentored.
The nurses at the Mount Sinai and Columbia University MS Comprehensive Care Centers play a crucial role in coordinating the care of individuals with MS and their families, which includes injection training and adherence support, symptom management and education, phone triage and infusion management, to referrals to other specialists such as urologists, neuro-psychologists, ophthalmologists, psychologists, occupational counselors, and physical, occupational and speech therapists.
The role of the social worker is an important component of a comprehensive care center facilitating interdisciplinary collaboration involving the doctor, nurse, outside vendors and service providers. In addition, the clinical social worker provides services to patients including counseling, entitlement consultations, case management, home care options, disability issues, equipment and supply needs, transportation, and additional referrals.
Because MS is not a procedure-driven specialty, insurance reimbursement is low relative to the amount of time the MS Care Center clinicians spend with a patient. The Centers rely on external funding from the National MS Society to provide the type of comprehensive care people with MS require. A grant from MS Hope For A Cure can guarantee the Corinne Goldsmith Dickinson Center for MS at Mount Sinai Medical Center and the Columbia University MS Clinical Care Center will receive funding in addition to the current budgeted support of $63,830 and $10,000 for Mount Sinai and Columbia University respectively, from the chapter.