When a child shows troubling neurological symptoms and specialized care isn’t available near their home, the Land of Enchantment’s beautiful, wide open spaces can suddenly become a barrier.
Some neurology care and testing is time sensitive, and quickly getting from a rural community to a specialist’s office for diagnosis and treatment is no easy feat. Neurological conditions such as epilepsy, nerve disorders and muscle conditions are complex, so a specific diagnosis and detailed treatment plan often requires more than one visit and more than one kind of specialist.
Put all this together, and a caregiver’s schedule can quickly become daunting. That’s where pediatric neurologists from University of New Mexico Children’s Hospital come in. As New Mexico's only Level 4 Epilepsy Center, our patients throughout the state have access to the most advanced diagnosis and treatment techniques.
To ensure residents who live outside of Albuquerque receive the best care available, we partner with the New Mexico Department of Health Children’s Medical Services (CMS), a state program that provides social workers to connect New Mexicans with medical care. Along with CMS, our pediatric neurology team is staffing outreach clinics across the state, meeting patients closer to home.
To bridge the gap between patient need and centralized neurology care, the UNM HSC pediatric neurology team is meeting patients where they are.
Breaking Down Barriers to Care with Outreach Clinics
Our most basic goal for families coming from rural communities is to limit their travel time and expenses as much as possible. UNM Children’s Hospital pediatric neurologists staff CMS clinics all over New Mexico. State social workers manage these outreach clinics, and our neurologists visit with 12-14 pediatric patients and their families on clinic days to assess symptoms, review test results, make diagnoses and conduct follow-up exams.
No matter the neurological issue, we want to make sure each family is directed to the right next step to get advanced neurological treatment. The UNM Health Sciences Center’s network of neurology clinics, on-call specialists and primary care doctors provide the care and answers our patients’ families need.
For example, pediatric epilepsy can often be assessed for locally by an electroencephalogram (EEG), an electrical recording of brain activity. This means the neurologist at the outreach clinic can perform an evaluation, review an EEG report and have a conversation with the family in more detail what an epilepsy diagnosis means, the prognosis and potential treatments such as medications. Follow-ups can be conducted at the clinic, and if an MRI is needed, we can sometimes make a referral to a nearby imaging center depending on the ability of the child to cooperate for the study.
Related reading: Leading the Way for Epilepsy Research, Specialized Care Across New Mexico
More complex issues often cannot be treated at the clinic. For example, a parent brings in their three-year-old with signs of a neuromuscular disorder such as Duchenne muscular dystrophy, we can order blood tests and direct them to our muscular dystrophy clinic for ongoing follow-up and treatment.
For emergencies such as infantile spasms, our clinic neurologist will connect with the pediatric neurologist on call in Albuquerque and direct the patient’s family to the emergency room. That way, the inpatient pediatric neurology team is ready to provide care when the family arrives.
Communicating Across Distances and Cultures
Communities across New Mexico and surrounding states are culturally diverse, and UNM Children’s Hospital doctors listen and take the time to understand where our patients are coming from.
For example, understanding the nuances of language is vital. Saying “this medication might give your child a skin rash” can be perceived more negatively than “some people have had a skin reaction to this medication.” Food is a central component of many cultures, and nutrition plays an important role in the treatment of seizures. Suggesting certain dietary limitations can lead to treatment objections when there’s a cultural conflict. It’s critical to explain the “why” behind our advice and to understand the “why” behind a caregiver or patient’s uncertainty.
I try to be honest with my patients and say, “I teach and have been taught Western medicine, so our approach to healing may not be exactly the same as your cultural experience. I’d like to better understand your thought process so we can figure out how our ideas can work together to help your child better.”
No matter the cultural background of a patient—even if it’s similar to the doctor’s—it’s always good to find clearer ways to communicate issues that can seem hidden and elusive. Offering a visual representation, such as an MRI, can help patients and families understand what we’re working to resolve, and that the treatments we recommend can and do help people that have had similar conditions.
Related reading: Pursuing a Career in Pediatric Epilepsy? Learn at the Forefront of the Field
How to Use Outreach Clinics
Patients do not have to pay upfront for a clinic visit, and the state bills the insurance company. If the family is not insured, social workers at the clinic can either help them get coverage or determine what additional testing and medication can be covered by CMS.
Children who attend the neurology specialty clinic (or any of the pediatric specialty clinics across the state) must have a referral from their primary care provider and must register with CMS at the county health building. Then, a social worker can help the family find the right clinic.
We keep open lines of communication and good relationships with primary care doctors all over the state to get patients into the appropriate Albuquerque clinic or into their local outreach clinic. CMS clinics staffed by UNM HSC specialists can fill up quickly. Caregivers should begin coordinating with the child’s primary care doctor if they suspect a neurological condition.
It’s also important for trainees entering the medical field to take note of this demand for neurology care across the country. There is a critical shortage of pediatric neurologists and therefore a clear need for upcoming doctors to specialize in this field.
Bringing New Doctors into Pediatric Neurology
Doctors who become residents and fellows in the UNM HSC Department of Neurology will be intimately involved with the pediatric patients who receive care at the outreach clinics. We have recently received approval for pediatric residents and fellows to attend the CMS clinics that don’t require an overnight stay in the rural community. They also have the opportunity to see outreach clinic patients who are referred to the Albuquerque clinics, helping manage more complex care.
Sometimes, a patient may see a resident or fellow at the main hospital first and then have follow-ups at their local outreach clinic. This is a chance to see care come full circle and get rich insights into what it takes to make organized care work. From the outreach clinics to our pediatric neurology surgery department and MS Specialty Clinic, we work as one team to get the best treatment to the children who need it.
Being a part of a well-coordinated patient care network in this way allows residents and fellows to work more with diverse populations. Our patients coming from rural New Mexico are going through different challenges, have traveled long distances and perhaps have different perceptions than patients coming in from greater Albuquerque. Regardless of their background or home address, we ensure that inclusivity and equitable care are at the heart of every patient visit.
Explore your options for training as a pediatric neurologist. Schedule a call with JJ Maloney, Medical Education Program Manager for the UNM HSC Department of Neurology. Book now.