Coordinating Care Among MS Specialists

Living with multiple sclerosis (MS) often means managing a complex web of symptoms, medications, and specialty visits. No single provider can fully address every aspect of the disease—which is why coordination across a multidisciplinary MS care team is so vital. Without clear communication between specialists, patients may experience delays in treatment, conflicting recommendations, or missed opportunities for early intervention.

With nearly 1 million people in the United States living with MS, the push toward comprehensive, patient-centered models of care is gaining momentum. Care systems are evolving to bring neurologists, therapists, and other providers together in shared efforts to improve outcomes and support patients through every stage of their disease.

In this article, we’ll explore how MS specialists work together, the communication systems that make team-based care possible, and how patients—and advocates—can help keep everyone aligned.

Understanding the Multidisciplinary MS Care Team

Effective MS management hinges on building the right team. Because MS affects the brain, spine, and immune system—while also impacting energy levels, mobility, vision, speech, and bladder function—a wide range of providers often play an active role in care.

Core MS Care Team Members and Their Roles

At the center of MS management is the MS neurologist, who handles diagnosis, disease progression monitoring, and long-term treatment planning. But no neurologist works alone.

You’ll likely also work closely with:

• MS nurse specialists who offer day-to-day support, coordinate logistics, and serve as critical communication hubs
• Rehabilitation therapists, including physical and occupational therapists, to address strength, coordination, and daily functioning
• Mental health professionals like neuropsychologists or clinical therapists, who help with cognitive symptoms, mood changes, or the emotional toll of chronic illness
• Social workers and case managers who guide patients through community resources, disability benefits, and home health needs

Administrative staff also help track appointments, handle referrals, and manage communication—providing the organizational backbone to multidisciplinary MS clinics.

Extended MS Care Team Specialists

Beyond the core team, patients may need input from condition-specific specialists. These providers help treat the secondary symptoms or complications that can arise as MS progresses.

Depending on your needs, this might include:

• Neuro-ophthalmologists for double vision or optic neuritis
• Urologists to help manage bladder dysfunction or sexual health changes
• Speech-language pathologists, especially if speech or swallowing is affected
• Dietitians, to support healthy weight, reduce fatigue, or manage GI symptoms
• Pain management specialists for neuropathic pain or spasticity
• Primary care providers, who help monitor general health and often coordinate with specialists across settings

In well-functioning teams, these providers stay in active communication, with early evidence suggesting this may improve care planning and patient experience.

Models of Coordinated MS Care

Coordination can look very different depending on where you receive your MS care. Some patients are treated in dedicated MS centers with full multidisciplinary teams onsite. Others work with dispersed specialists who collaborate across systems and locations.

The MS Care Unit Model

Dedicated MS care units—like the Multiple Sclerosis Centers of Excellence (MSCoEs) within the Veterans Health Administration—offer a centralized model. These centers bring together neurologists, therapists, nurses, social workers, and more under one roof or within a single system.

These units typically offer:

• Centralized care planning with shared access to records and unified treatment protocols
• In-house coordination staff, often MS nurse coordinators, to streamline referrals and updates
• Education and research opportunities, allowing patients to access clinical trials or emerging therapies
• More consistent continuity of care and support for long-term disease management

However, centralized care may not be accessible for every patient, especially those living far from major urban hubs.

Hub-and-Spoke Models for Regional Coordination

To bridge gaps for rural or underserved patients, many systems are adopting a "hub-and-spoke" model. In this setup, a central MS Coordinating Center (the hub) provides consultation and planning support to a network of local providers (the spokes).

Features of successful hub-and-spoke networks include:

• Telehealth-enabled consultations between MS specialists and community physicians
• Shared care protocols adapted to regional resources
• Referral pathways for higher-level care or advanced testing when needed
• Education for local providers, expanding MS care access in smaller communities

Examples include the National MS System of Care Network through VA Medical Centers, which leverages interfacility consults and Veterans Integrated Service Networks to maintain care quality across locations.

Communication Challenges and Solutions in MS Care Coordination

Even in well-structured systems, communication breakdowns between MS specialists are common. These gaps can delay care, cause frustration, and reduce the effectiveness of treatment plans.

Common Communication Barriers Between Specialists

Some of the most frequent obstacles include:

• Siloed electronic health records, which prevent real-time information sharing
• Inconsistent terminology, especially between disciplines like neurology and physical therapy
• Limited time, making it hard for providers to connect beyond appointments
• Unclear scope boundaries, leading to hesitancy around overlapping roles
• Geographic and institutional differences can make coordination harder, especially when providers work in separate systems or don’t share records.

When these issues aren’t addressed, patients often end up relaying information themselves—sometimes inaccurately or incompletely.

Effective Communication Strategies and Tools

Fortunately, many MS care teams are adopting new tools and practices to improve coordination. These include:

• Shared EMRs or patient portals, giving all providers access to real-time MS updates and records
• Weekly or monthly multidisciplinary meetings, especially in MS Coordinating Centers
• Standardized forms, like symptom tracking sheets or medication adjustment logs
• Secure digital messaging platforms, allowing asynchronous collaboration
• Care coordinators or MS nurse navigators, who serve as the linchpin for all communication

These systems reduce duplication, improve clarity, and keep patients from falling through the cracks.

The Critical Role of the MS Nurse in Care Coordination

Few roles are more central to MS care than that of the MS nurse. In many systems, the nurse acts as both case manager and patient advocate.

MS Nurses as Central Coordinators

MS nurse specialists do far more than assist with medication or symptom questions. They:

• Bridge gaps between specialists, relaying updates and confirming next steps
• Support patients through transitions, from diagnosis to disease progression
• Answer urgent questions, preventing unnecessary ER visits or missed appointments
• Educate patients and caregivers, building health literacy and confidence

In this way, the MS nurse helps hold the care team together—clinically and emotionally.

Optimizing the MS Nurse Coordinator Function

To maximize the impact of this role, programs must support MS nurses with the right resources:

• Caseload caps, to allow time for meaningful coordination
• Digital tools, such as care dashboards and shared calendars
• Team integration, so the nurse is involved in planning, not just follow-up
• Collaborative relationships with external specialists and community supports
• Ongoing training, especially in informatics and MS-specific care models

Strong MS nurse coordination has been associated with improved patient experience and treatment adherence, though data on outcomes like hospital use or relapse rates remains limited.

Patient-Centered Coordination Approaches

While systems and specialists play a big role, the patient is the ultimate driver of effective self-care and care coordination for MS. Involving patients directly—through education, shared tools, and communication access—leads to better outcomes and more resilient care.

Involving Patients in Care Coordination

Patients should be invited to take an active role in navigating their care. This can involve:

• Shared decision-making, where treatment plans reflect patient goals
• Symptom self-monitoring, supported by mobile apps or care journals
• Patient portals, which give patients access to lab results, notes, and care plans
• Regular touchpoints, so patients can raise concerns between specialist visits

Caregivers should also be looped in where appropriate, especially for patients with mobility, cognitive, or emotional challenges.

Personalized Care Plans as Coordination Tools

One of the most effective tools in coordinated care is a clear, documented care plan—built with the patient and shared across providers.

These plans typically include:

• Disease-modifying therapies and medication schedules
• Symptom management strategies, tailored to the individual
• Rehabilitation goals, including progress tracking
• Mental health or social needs, including community referrals

Plans should be reviewed at regular intervals—or immediately after a relapse, medication change, or hospitalization.

Coordination During Key Transition Points

Certain moments in the MS journey call for especially careful coordination. Early intervention and structured transitions can prevent setbacks and keep care moving forward.

Coordinating Care at Diagnosis

The period after diagnosis can be overwhelming, but it’s also when coordination lays the foundation for long-term stability.

Key steps include:

• Assembling the core care team
• Providing educational materials matched to patient readiness
• Scheduling initial rehab and symptom consultations
• Clarifying communication channels, including point-of-contact providers
• Offering psychosocial support, such as counseling or peer networks

Early coordination helps patients understand the disease—and their options—without feeling abandoned or rushed.

Managing Care During Disease Progression and Relapses

MS is a dynamic condition, and plans must adapt as new symptoms appear or medications stop working.

Effective coordination during these times involves:

• Rapid response for worsening symptoms or relapse signs
• Hospital care communication, so outpatient providers stay informed
• Medication reassessments, especially after new symptoms
• Rehab referrals, including speech or occupational therapy
• Follow-up planning, so no steps are missed after discharge

Nurse coordinators often act as the anchor during these transitions, helping everyone stay on track.

Technology and Systems for Better MS Care Coordination

The right digital infrastructure can make or break MS care coordination. From patient access to provider collaboration, modern tools are reshaping how MS teams operate.

Digital Tools for MS Care Coordination

Many MS centers—especially Coordinating Centers of Excellence—are investing in integrated platforms designed to streamline care.

These systems often include:

• Specialized EHRs with MS-specific fields and care pathways
• Telehealth portals, enabling virtual visits with multiple specialists
• Mobile tracking apps, for fatigue, pain, or medication side effects
• Secure messaging platforms, for provider-patient and inter-provider communication
• Remote monitoring systems, such as wearable devices for gait or balance tracking

When used consistently, these tools can improve communication and might support earlier intervention—though stronger evidence is still needed.

Quality Improvement Systems for Coordination

Effective coordination is a moving target, which is why many programs adopt quality improvement models to stay responsive and accountable.

Common methods include:

• Metrics tracking, like time-to-treatment after relapse or appointment follow-up rates
• Team feedback loops, through regular reviews or case conferences
• Learning health systems, which use data to drive real-time protocol changes
• Patient satisfaction surveys, especially focused on coordination experience
• Structured improvement initiatives, using models like Plan-Do-Study-Act (PDSA)

These efforts help translate good intentions into consistent, measurable care improvements.

Overcoming Structural Barriers to Coordinated MS Care

Systemic obstacles—like insurance hurdles or institutional inertia—can derail even the best clinical coordination. Addressing these challenges is part of building an MS care system that works for everyone.

Addressing Financial and Insurance Challenges

Insurance rules often complicate multidisciplinary MS care. Different specialists may require separate authorizations, and coordination work itself is rarely reimbursed.

To navigate this landscape, care systems can:

• Support billing codes for care planning and coordination time
• Use value-based payment models that reward outcomes, not volume
• Leverage social workers, who can appeal denials and access financial assistance
• Educate patients, so they know which services are covered
• Document care coordination thoroughly, to justify insurance needs

When systems absorb the burden of red tape, patients can focus on healing—not paperwork.

Building Institutional Support for Coordination

Care coordination requires commitment beyond individual providers. Institutions must invest in infrastructure, policies, and training to make collaboration routine.

This may involve:

• Leadership buy-in, from medical directors or administrators
• Defined protocols, so coordination roles are clear
• Training programs, especially for new hires or rotating staff
• Physical space, like team meeting rooms or integrated clinics
• Incentives and recognition, tied to coordination success

By embedding coordination into the culture—not just individual practice—health systems can improve outcomes across the board.

How Medicare Supports (and Limits) MS Care Coordination

Most people with MS will rely on Medicare at some point, whether through disability or aging into the system. While Medicare covers many key services, it doesn’t offer a built-in way to coordinate them.

There’s no national MS-specific care network within Medicare. Instead, most patients work with a mix of individual providers—each using separate systems, billing practices, and documentation tools—which can make coordination difficult.

Still, Medicare does cover important pieces of the MS care puzzle:

• Part B: Neurology visits, rehab therapy, mental health care
• Part D: Prescription coverage, including disease-modifying drugs
• Part C (Medicare Advantage): Some plans may include case management or limited forms of coordinated care
• Care management billing codes: Some providers can bill for coordination time using Chronic Care Management (CCM), but use is limited and eligibility varies.

The biggest gap is structural. There’s no default care coordinator. No central team. Just disconnected visits unless someone—often the patient or a proactive provider—pulls it all together.

That’s where things like care summaries, shared portals, and patient advocates come in. For many, these tools are the only way to bring order to an otherwise fragmented system.

How a Solace Advocate Can Assist with MS Care Coordination

For many patients, even the best care systems can still feel fragmented. MS-focused Solace advocates step in to help connect the dots—especially when life, symptoms, or system complexities make self-coordination difficult.

The Solace Advocate's Role in MS Care

Solace advocates are trained to help MS  patients get more from their care team—by organizing, translating, and reinforcing communication across providers.

They can:

• Find the right specialists and schedule appointments
• Assess where coordination is breaking down—for instance, when referrals stall or appointments conflict
• Gather updates from neurologists, rehab therapists, and PCPs to keep everyone on the same page
• Support patients during transitions, like medication changes or new diagnoses
• Help patients prepare for appointments—and even attend them virtually—so time with specialists is used effectively
• Track progress and follow-through, so recommendations don’t get lost in the shuffle

Advocates work alongside your medical team, making the entire system more patient-friendly and proactive.

Solace advocates are covered by Medicare—see if you're eligible.

When and How to Engage a Solace Advocate

If you’re noticing gaps in communication, care delays, or confusion between specialists, it may be time to bring in a Solace advocate.

Common signs include:

• You’re repeating your medical history at every appointment
• Specialists are giving conflicting guidance
• It’s unclear who is managing key symptoms or tests
• You’re overwhelmed tracking appointments or paperwork
• Important follow-ups aren’t happening

Solace advocates can step in with an initial coordination plan and stay involved as your needs evolve—especially during relapses, hospitalizations, or major care shifts.

FAQ: Frequently Asked Questions About Coordinating Care Among MS Specialists

How do I know if my MS care is well-coordinated?

Your MS care is likely well-coordinated if your specialists operate as part of a defined multidisciplinary MS care team, you receive consistent updates across visits, and referrals don’t stall. Signs of strong care coordination include streamlined scheduling, use of standardized care protocols, and support from an MS nurse or patient care coordinator. Veterans receiving care through MS Regional Specialty Programs (MS RSPs) or Multiple Sclerosis Centers of Excellence (MSCoEs) often experience this level of coordination.

Who should be the central point of contact on my MS care team?

Most comprehensive MS Coordinating Centers designate an MS nurse specialist as the primary contact. These nurses help manage multi-disciplinary MS care teams, track care utilization, and serve as liaisons between patients, neurologists, rehab specialists, and community providers. If your center lacks a central coordinator, a Solace advocate can help bring structure by identifying gaps and establishing clear communication pathways.

What can I do if specialists are giving me conflicting advice?

Inconsistent guidance can arise when MS care isn’t centralized. Ask whether your team uses a shared coordination model—like a hub-and-spoke system or national MS system of care network. Request a multidisciplinary case review or a clinical consultation summary from your neurologist to align plans. Solace advocates can also help by flagging conflicts and facilitating interfacility consults, especially if you're receiving care across multiple settings.

How often should my entire MS care team communicate?

High-functioning MS care networks—such as VA Medical Facilities participating in the Veterans Integrated Service Network—often schedule monthly team case conferences. In general, your care team should communicate at key decision points: diagnosis, relapse, medication change, or care transitions. If you're part of a Coordinating Center following national standards of MS clinical care, you may experience more regular reviews and data-informed care planning.

What role does my primary care physician play in MS care coordination?

Your PCP ensures continuity of care across both MS-specific and general health concerns. They often coordinate with MS specialists, manage preventive screenings, and monitor non-neurological conditions. In hub-and-spoke systems, the PCP typically acts as a spoke site, connected to a central MSCoE or regional specialty hub through secure referrals and shared documentation systems. This coordination is critical to preventing care fragmentation.

How can I prepare for appointments to improve care coordination?

Keep a running symptom log, medication list, and recent test results using a secure patient portal or mobile app. Ask whether your care system supports informatics tools or digital care summaries, which can streamline team-wide communication. Solace advocates can help assemble appointment prep packets or transmit updates to multiple providers—especially during transitions.

What technology tools can help me manage my own care coordination?

Many MS Coordinating Centers offer access to integrated EHR portals, remote monitoring tools, and apps for managing fatigue or tracking relapses. Look for tools that support educational opportunities, facilitate community care services, and enable messaging with multiple specialists. Solace also supports patients using digital coordination checklists to align care with their providers.

How do I add new specialists to my care team when needed?

Talk to your MS neurologist or nurse coordinator about making a referral. They can help bring new providers into the loop and share relevant records or test results. If you're seeing specialists in different systems, a Solace advocate can help coordinate documentation, confirm insurance coverage, and make sure the new provider is aligned with your existing care team.

What are MS Regional Specialty Programs (RSPs), and how do they support coordination?

MS RSPs are part of a national network of VA specialty clinics designed to deliver high-quality MS disease management. These programs operate under the MSCoE umbrella and use hub-and-spoke models to connect local (spoke) providers to central (hub) expertise. They emphasize shared clinical consultation, access to specialized MSCoE clinical staff, and adherence to national coordination standards.

What should I do if my MS care feels fragmented or too spread out?

Fragmented care—such as delayed appointments, duplicate tests, or contradictory instructions—often stems from a lack of integrated coordination. In these cases, it helps to work with a Solace advocate or connect to a formal Coordinating Center. Advocates can bridge care across systems, assist with navigating veterans health administration policies, and help patients engage a care team that spans the continuum of acute, chronic, and long-term care services.

‍This article is for informational purposes only and should not be substituted for professional advice. Information is subject to change. Consult your healthcare provider or a qualified professional for guidance on medical issues, financial concerns, or healthcare benefits.

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