Casebook: Challenge and Opportunity

Child health services here are limited to delivery of primary care through a few pediatricians, GPs and NPs. There are very limited resources in the public sector, and access to the private sector is constrained by geographic, cultural, language and socio-economic barriers. Other health delivery challenges include cumbersome licensing processes, poor compensation paired with high cost-of-living and inadequate infrastructure. Patients go "off-island" for both emergency and subspecialty care, often paying out-of-pocket for expensive care on the mainland. Many locals use different varieties of “bush-tea” for common ailments (one such preparation contains phenobarbital). Misconceptions and superstitions abound despite the efforts of schools and churches.

When I got here, the exam room had open electrical outlets, no phone access or exam materials, and no one expected me to show up till I completed a week of orientation!!
I used the time to understand work processes and patient flow, prepare protocols for scheduling and intake, and communicate with providers throughout the islands about needs and opportunities. I also spoke with several local agencies to understand how patients used their community-based services.

Over the next few weeks, a network of health professionals (“champions for children”) began finding ways to establish services. They provided me with feedback, patients and opportunities to engage the community. I met with nurses, school officials, and community providers to learn and teach about child health programs. I also talked with physicians in Puerto Rico to extend the network beyond the USVI territory.

In the first week of seeing patients, I was lucky to get some early wins: a child with myoclonic epilepsy who showed a remarkable turnaround after correct interpretation of EEG and medication change, a child with glycine encephalopathy who “woke up” after high doses of cough syrup(dextromethorphan); parents who were relieved after education, support and counseling for neurological illnesses. After a month of seeing patients on St Thomas, we set up child neurology clinics on St Croix and St John.

Several partners are helping to consolidate the programs. I worked with private enterprise to establish video-EEG and sleep lab services. The American Academy of Neurology, Epilepsy Foundation of America and industry contacts provide patient-directed educational materials. I am in early-stage talks to enlist support of the World Foundation of Neurology.

What’s next? Patient education through open houses; training of allied health personnel about neurology basics; talks with the Dept of Education about screening for neurological diseases; establish protocols to streamline neurological evaluation for sickle cell disease; network with other pediatric sub-specialists to set up multi-specialty clinics; evaluate extension of services to British Virgin Islands.