Living with Multiple Sclerosis: A team approach to care
Beverly Lacek knew something wasn’t quite right when she started experiencing numbness around her face and eyes in July 2009. Then, her primary care doctor used the two words she never expected to hear—multiple sclerosis.
“That was a surreal moment,” Lacek said. “I truly thought it was something else, but then my family doctor scheduled the MRI, and there they were—the first few lesions. As a young mother, I was devastated.”
Her training as a registered nurse had taught her the worst parts of the disease, but she quickly found that many new treatment methods had become available since the early 2000s. The Beckley, West Virginia, native tried a series of treatments and infusions before connecting with Paul Ferguson, MD, a practicing neurologist at Marshall Health and professor and chair of neurology at the Marshall University Joan C. Edwards School of Medicine who specializes in the disease, in 2011.
Ferguson was able to offer her more treatment options as well as access to more comprehensive care. Ferguson initiated the clinic at Marshall Health in 2013 after he noticed disparities in the level of care for MS patients in West Virginia. At that time, the only physician in the region with expertise in the management of MS had relocated out of state resulting in numerous displaced patients who still required West Virginia-based care, not only for convenience but also due to insurance restrictions. Nine years later, the clinic now serves more than 1,000 patients with the disease, and the coordinated care it provides patients extends far beyond the walls of the clinic.
“It was important to me that Marshall Health take ownership of this care gap and commit to caring for MS patients—not just from a neurology perspective but to truly help them comprehensively manage their illness across a variety of subspecialties,” Ferguson said.
During the next four years, Ferguson became a leader within the growing practice. He was named inaugural chair of the medical school’s newly formed department of neurology in 2015. As the practice further expanded, Ferguson and other neurology faculty built the expertise and partnerships necessary to advance care for MS patients in West Virginia and a number of surrounding states. The medical school, under the direction of program director and associate professor Justin Nolte, MD, added an accredited neurology residency program in 2017. It also engaged in clinical and translational research and is currently enrolling in multiple clinical trials for MS.
A diagnosis of multiple sclerosis is often accompanied by numerous symptoms including weakness, muscle spasticity, bladder dysfunction and mental health issues, which can require a number of different specialists to be involved in a patient’s care. Collaboration across other medical specialties may include functional neurosurgery, neuropsychology, neuro-radiology, ophthalmology, orthopaedics, pain management, psychiatry and urology. These specialists each have expertise in the evaluation and symptom management specific to MS patients.
These collaborations earned Marshall Health recognition as the state’s only Center for Comprehensive Care by the National Multiple Sclerosis Society (NMSS) in June 2021. To earn the distinction, an organization must demonstrate coordinated, multi-disciplinary care for MS patients. According to NMSS, Marshall Health’s clinicians continually demonstrate a wealth of knowledge, experience and the important attention to detail necessary in treating people living with MS.
“When it comes to treating MS, it is necessary that the patient and everyone on his or her care team be on the same page,” said Ferguson, who, in 2016, became the first neurologist in West Virginia to receive a Partners in Multiple Sclerosis (MS) Care designation in neurology by NMSS. “Over the years, we have built efficiencies into our model through collaborations across Marshall Health as well as with a number of community physicians. The medical community in Huntington has truly come together to help us make sure our MS patients receive the care they need.”
A model for multi-disciplinary assessment and management of MS patients, the Comprehensive MS Clinic housed within Marshall Neurology includes onsite physicians, therapists, MS-certified nursing staff and clinical pharmacists who are all present during clinic visits to most effectively manage the unique needs of this patient population. They participate in ongoing continuing education specific to MS for the physicians and nursing staff, and the team works together to help modify or slow the disease course, treat attacks, manage symptoms, improve function and safety and address the emotional toll multiple sclerosis can take on a patient.
Most importantly, Ferguson and his team have formed close-knit bonds with their patients and earned a reputation of being available to meet needs quickly.
”When I have a question, I reach out to April, one of the nurses, and she answers within the hour,” said Lacek said. “Between dealing with MS, trying to raise a family and working full time, having a support system a phone call away is reassuring, especially on the days when it is struggle just to get through the day.”
With some patients driving as far as 200 miles one way to see a specialist, Ferguson says a proactive approach to care management is a must. The clinic has an identified nurse liaison who connects directly with patients and primary care providers. The liaison ensures the lines of communication remain open about upcoming visits and answers questions from previous appointments. The liaison also gathers medical history, testing results and other documentation ahead of the next scheduled appointment.
Lacek is one of those patients, making the 220-mile round trip from Beckley to Huntington every six months for doctors’ appointments, radiology scans, infusions and lab work. Sometimes she works with a speech pathologist or a physical therapist.
“Here, everyone comes to you,” she said. “If I have questions about mobility or aspiration, they are all right there with me during my appointment to answer them. As a physical therapist, my husband has a unique perspective, so it’s been really valuable having him there with me, able to talk directly with my physical therapist.”
A dedicated clinical pharmacist, Dustin Baum, PharmD, also works with neurology patients as part of the MS care team. The pharmacist is involved in every new assessment and plays an integral role in patient management. Baum also initiates pharmacist-directed conversations about medication compliance, access to medication and payment options and checks in on every patient at scheduled intervals after a new medication treatment is initiated.
“Together, all of these individuals make same-day appointments and testing available so that it reduces the travel burden for patients,” Ferguson said.
Most recently, Lacek’s MRIs have shown that the disease has advanced; however, she is thankful for an early diagnosis and continued interventions that have helped slow the disease progression and allowed her to continue living her life.
“Over the last few years during the pandemic, we’ve been very guarded because I work in the ER and do have some numbness and fatigue when I’m due for an infusion, but overall, I think I’m doing well,” she said.
According to NMSS, more than 3,000 people in West Virginia and nearly 1 million nationwide are living with MS. Marshall Health is one of only 145 comprehensive care centers designated by the NMSS across the U.S. and the only recognized center in West Virginia. To learn more about multiple sclerosis care at Marshall Health, visit marshallhealth.org/multiple-sclerosis or call Marshall Neurology at 304-691-1787.
This article was originally published in the 2022 WV Living Healthy magazine.
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