The ALS Association St. Louis Regional Chapter collaborates with many experienced ALS clinicians across eastern Missouri and central and Southern Illinois to help ensure people living with ALS have access to specialized care. The ALS Association’s Certified Treatment Center of Excellence at Saint Louis University, The ALS Treatment Center at St. Francis Medical Center in Cape Girardeau, the John A. Cochran VA Medical Center, and the Neuromuscular Clinic at Washington University School of Medicine, provide compassionate care in a supportive, family oriented atmosphere. This multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit. The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association Chapter liaison, and can provide a dynamic, individualized diagnosis, anticipatory guidance, and care planning. The multidisciplinary clinic staff provides the nexus between the patient, their family and caregivers, and the medical community.
“There is a difference between curing and healing. Unfortunately, at this time, there isn’t a cure for ALS. We do, however, believe we can heal the patient. This can be done by addressing the fact that ALS is not just a physical disease, but an emotional, spiritual, and psychological disease as well. The multiple aspects of ALS are best addressed in the setting of a multidisciplinary clinic that acknowledges the unique challenges that ALS patients and their families face. ALS doesn’t just affect one person, but the entire family. Studies show that care in an ALS clinic improves quality of life as well as longevity.”
– Scott D. Miller, MD,
The ALS Association Recognized Treatment Center
at Kaiser Permanente South Bay Medical Center
What can you expect during a typical clinic visit?
ALS clinics are designed to give people with ALS a regular, thorough, and interdisciplinary evaluation; answers to questions; and potential solutions to problems. Typically, a clinic visit involves a full morning or afternoon and occurs every 3 months.
At each appointment, patients and their families see a group of specialists with great ALS experience in a few hours, avoiding up to eight separate appointments. This is the best in a “one stop shopping” experience. Each clinician is experienced in seeing ALS patients and can approach the many problems from different points of view.
For example, a dietitian may talk about nutrition and hydration needs, compare your weight to the last visit, and discuss any issues that have come up in the meantime. The nurse/coordinator may gather general information about how you are feeling and answer questions, help coordinate care and facilitate any special consultations or follow-up care. From the respiratory therapist, you may hear the results of your pulmonary function test, and may discuss options for improving breathing both during the day and at night. The speech therapist may evaluate changes in swallowing and talk about options for communication devices that you and your family might want to consider in the future. The physical therapist could help you learn how to use a cane properly for support, or may evaluate the need for a wheelchair. An occupational therapist may suggest adaptive utensils to make eating much easier.
The Chapter liaison may provide educational materials, offer loaner equipment, or have other suggestions about coordinating services from The ALS Association. The social worker may help in handling an insurance reimbursement problem or suggest ways to deal with family issues arising from the impact of ALS.
The staff may gather for a team meeting to review challenges and solutions to help ensure every possible approach has been considered for each individual. This dedicated team may spend a good deal of time communicating about complicated patients and coordinating care, but this time is well spent, leading to fewer inefficiencies, higher quality care, and, ultimately, better outcomes.
Excerpted from “Including the Multidisciplinary Team Approach in Your Care Plan,” Copyright © 2017 by The ALS Association.