The National MS Society: Support Resources for Patients, Families, and Professionals

October 1, 2006
Gerald W. Keister

Although the prospect of disability is very real, help is available; the National Multiple Sclerosis Society provides a vast array of information and support services for patients, their families, and for health care professionals.

The disability associated with multiple sclerosis (MS) is variable. One of the greatest challenges presented by MS is the uncertainty of what the future holds for persons with this disease. Thanks to improvements in treatment, most patients have a near normal life span, although it is marked by progressive disability.

Although the prospect of disability is very real, help is available; the National Multiple Sclerosis Society provides a vast array of information and support services for patients, their families, and for health care professionals.

BASIC RESOURCES
The first place that most people go today when seeking information about MS is the Internet. The National Multiple Sclerosis Society's Web site (www.nationalmssociety.org) has information on nearly every subject related to MS. The "Web Resources" section of the site provides links to government agencies, MS organizations, nonprofit organizations, pharmaceutical companies, journals for professionals, computer accessibility, lifestyle support, and patient services. The online Multiple Sclerosis Information Sourcebook contains dozens of articles with answers to frequently asked questions, current information on treatments and symptoms, and descriptions of the social and psychological impact of the disease.

The society also provides an extensive array of print publications:

  • MS Next Step is a packet that physicians have been encouraged to give persons in whom MS is newly diagnosed. "Right from the moment of diagnosis, we begin to help the patient adapt and understand the disease," explained Nancy Law, vice president of client programs at the National Multiple Sclerosis Society.
  • Knowledge Is Power is a free educational series of articles for patients in whom MS has been newly diagnosed and for their families. It addresses topics such as disease-modifying treatments, employment issues, diet and exercise, healthy relationships, doctor-patient communication, and parenting.
  • InsideMS is a lifestyle magazine for persons with MS, their families, and health care professionals.
  • Teen InsideMS is a quarterly online magazine for teenagers with MS and teenagers who have a parent or loved one with MS. Content focuses on living with MS and includes reader-submitted stories and poems. A chat room on the journal's Web site provides a forum for teenagers to ask questions and share feelings.
  • Kids Can Get MS Too is a handbook for parents with a child or teenager with MS. It covers a wide range of issues of interest to parents, including the diagnosis and treatment of MS, cognitive issues, and tips on working with school systems and insurance companies.
  • Keep S'myelin is a colorful, informative, and reassuring publication that helps parents and their children talk and learn about MS together. Keep S'myelin features articles about a variety of MS-related topics, as well as puzzles, activities, interviews with children, reader-submitted materials, and a special insert for parents. Issues are available in an interactive online version.

The society also provides a telephone help line. "We field more than 300,000 calls annually from patients with MS and their families who are sometimes seeking disease-related information or seeking help with an issue or problem that they have," Law explained. "We provide both information and referral services. This service allows callers one-on-one individual help in a timely way."

In addition, the Career Crossroads: Employment and MS program is designed by experts in employment and in MS care to help persons living with MS to remain in the workforce. The program contains a video, a trainer's guide, and materials for participants. It covers a range of issues including disclosure at work, asking for reasonable accommodations, and knowing one's insurance and employment rights.

All of the resources mentioned above can be obtained by calling 800-FIGHT-MS (800-344-4867). Callers will be referred to a local Multiple Sclerosis Society chapter.

CONNECTING PEOPLE
An important service of the society is to reduce the isolation of those with MS by helping persons with the disorder connect. Kimberly Koch, manager of Knowledge and Family Programs at the National Multiple Sclerosis Society, pointed out that 36,000 persons attend the society-associated self-help groups annually. In rural areas, self-help groups are sometimes conducted by telephone. Patients and their caregivers also are encouraged to participate in Web-based chat rooms provided through the society's partnership with MSWorld, the official chat and message board site for the society (www.msworld.org).

Peer support programs also are available through the society for patients in whom MS has been newly diagnosed and their family members. "We match up a person with MS with a person who is interested in talking with a peer by telephone," said Koch. "The peer can be another person who has MS or a family member of an affected person who wants to learn more about the disease or just needs someone to talk to."

For the past 10 years the society has been devoting resources to children with MS, explained Koch. "We're seeing MS diagnosed in more and more children under the age of 18. The society has started to offer a variety of support and self-help programs for this population." She estimated that there are 8000 to 10,000 children and teens with MS nationally. The society funds 6 pediatric MS centers of excellence that were established earlier this year.

  • Center for Pediatric-Onset Demyelinating Disease at the Children's Hospital of Alabama, University of Alabama at Birmingham.
  • Jacobs Center for Pediatric MS, Jacobs Neurological Institute, State University of New York at Buffalo.
  • Pediatric MS Clinic at Mayo Clinic in Rochester, Minnesota.
  • National Pediatric MS Center at Stony Brook University Hospital, Long Island, New York.
  • Partners Pediatric MS Center at the Massachusetts General Hospital for Children in Boston.
  • University of California, San Francisco Regional Pediatric MS Center.

Building a nationwide network of pediatric MS centers allows families and patients to benefit from the collective wisdom and resources of MS experts across the country. The centers seek to provide optimal medical and psychosocial care and support to children and their families; to educate the medical community about pediatric MS; to develop a nationwide collective and shared network of knowledge; and to build a framework for research into this patient population.

The society also is starting a peer support program for parents with children who have MS. "When MS is initially diagnosed in their child, it is quite overwhelming for parents to process all that is going on," explained Koch. "Families really value having someone to talk to right away." More information is available by calling the society's main number: 800-FIGHT-MS.The society conducts outings for persons with MS and their families. "For many families, this is the only time they get out to do something social, because they may not have the financial means to do things on their own," Koch pointed out. Family outings might include visits to a zoo, a museum, or a theme park. Chapters also offer weekend or week-long camps that function as getaways for couples, partners, or caregivers of patients, and of course, persons with MS. Many chapters sponsor respite-type services so families can take a break from caregiving responsibilities.

A LOOK AT A LOCAL CHAPTER
The Greater Delaware Valley Chapter in the Philadelphia area is a typical example of local chapters of the National Multiple Sclerosis Society. It assists with questions and concerns of patients in whom MS has just been diagnosed and provides information and referrals to a variety of agencies, facilities, and self-help groups.

Through its Home Care Program, it provides home health aid assistance (not skilled nursing services) for persons who have difficulty with activities of daily living. Home health aides assist with personal care, meal preparation, light housekeeping, and so on. Physical/occupational therapy programs also are provided by the chapter. Furthermore, the chapter provides transportation to appointments with neurologists and to other medical appointments. In addition, the Medical Equipment Program provides patients with access to a wide range of assistive devices. "We directly purchase those assistive devices for clients," said Karen Mariner, MSW, program director of the chapter. "Equipment is permanently on loan to the client, and there is no charge to the client for rental."

The local chapter contracts with local agencies for all its therapy, home care, and medical equipment services. "We don't provide any services in-house," explained Mariner. "All of these services are funded through the chapter's direct fundraising efforts, including the MS Bike Tour, the MS Walk, the MS Challenge Walk, corporate events, and the direct support of clients and donors," said Mariner.

Mariner oversees the client services department, which is staffed with master's-level professionals, including counseling and rehabilitation specialists and recreational therapists.The Greater Delaware Valley Chapter has clinical affiliations with several local medical universities and hospitals specializing in MS care, including Thomas Jefferson University Hospital in Philadelphia, the Hospital of the University of Pennsylvania, Graduate Hospital in Philadelphia, Lehigh Valley Hospital in Allentown, and Good Shepherd Rehabilitation Hospital in Allentown, she explained.

RESOURCES FOR CLINICIANS
The National Multiple Sclerosis Society provides consultations about establishing multidisciplinary clinical facilities, and it provides financial support for the development of society affiliations with clinical facilities, according to Rosalind Kalb, PhD, director of the Professional Resource Center. She pointed out that there are currently more than 150 society-affiliated MS clinical facilities nationwide.

In addition to providing continuing education programs to nurses, who, Kalb emphasized, play a pivotal role in patient care and spend more time with patients than physicians, the society gives special attention to mental health professionals, rehabilitation specialists, and pharmacists. They have developed 3 training programs for nurses, mental health professionals (psychologists, social workers, and counselors), and rehabilitation professionals (physical and occupational therapists) that chapters can offer locally.

The society also offers clinical and research fellowships for physicians, nurses, and young investigators. The society has begun emphasizing the importance of rehabilitation during the disease course. Hence, it has created a new institution/mentor-based rehabilitation research postdoctoral fellowship. The award is made to a mentor/institution combination and not directly to the postdoctoral fellow. It is designed to emphasize opportunities for new research training and to broaden the scientific competence of the fellow.

The mentor should be an established and active researcher in MS or a related disorder, and the fellow selected by the mentor should hold a PhD, MD, or equivalent degree. The fellowships are not exclusive to physicians. Participants in the program can come from such fields as physical, occupational, or speech therapy; psychology; rehabilitation engineering; nursing; or another field. The research training can focus on fundamental as well as applied studies but must be relevant to both rehabilitation of persons with MS and the society's mission.

The society's Web site for health care professionals is www.nationalmssociety.org/PRC, or clinicians can call 866-MS TREAT (866-678-7328). Most of the publications for health care professionals are available electronically. Hard copies are mailed at no charge.

Clinicians also should note that the society's Professional Resource Center houses the most comprehensive library of MS information in the world, according to Kalb. "We have virtually every article related to clinical care in our collection. Clinicians can call us for information, and we can search our own library collection as well as do a general literature search using MedLine. We then send out articles either in paper or electronic format. Beyond the first 3 articles we need to charge a fee to help cover our copyright costs-which are immense-but at least we've saved clinicians a lot of time and effort in doing that."Physicians are invited to consult via e-mail with specialists who serve on the society's medical advisory board. The e-mail address for the MD-on-Call Program is MD_info@nmss.org. Allied health professionals also can consult with specialists via e-mail by sending correspondence to HealthProf_info@nmss.org.

GERALD W. KEISTER is a medical news writer based in Berwyn,Pennsylvania.