PVAMC Initiative Helps ALS Patients Navigate VA Health Care - Providence VA Medical Center, Rhode Island
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Providence VA Medical Center, Rhode Island


PVAMC Initiative Helps ALS Patients Navigate VA Health Care

ALS Systems Redesign Team

(From left: ALS Systems Redesign Team Members: William Luderer, PT; Stephen Mernoff, MD; Marie Sullivan, LICSW/CCM; Erinn Raimondi, OTR/L; Laurie Wilson, NP; Ellen Tragar, PT; Diane Blier, NP; and Maureen Hebert, MSW)

Wednesday, April 18, 2012

In the fall of 2008, Veteran John Antonizio was referred to Erinn Raimondi in the Providence VA Medical Center’s Occupational Therapy Department for Ulnar Neuropathy.  Mr. Antonizio declined to be seen at that time.  "The doctor is running more tests,” he said.  “Let's just wait and see what happens."

Two months later, Erinn received another consult on Mr. Antonizio; this time, the diagnosis wasn’t Ulnar Neuropathy.  It was ALS.  From that moment on, Erinn and John would work together, forging a path into the unknown for equipment, therapy protocols, and resources.  Months passed before John made his way to the SCI (Spinal Cord Injury) Clinic, where he was provided with interdisciplinary care.  “There were so many questions left unanswered,” Erinn recalls, “but at least now there were more hands carving the path.”

ALS or Amyotrophic lateral sclerosis—also known as Lou Gehrig’s disease—is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.  There is no known cure.  Patients diagnosed with ALS not only have to face the grim reality that they will lose their ability to function physically but must also struggle with knowing that they will continue to remain cognitively intact.  For the rest of their lives, patients with ALS and their families will face struggles of unimaginable proportions.  Children become caregivers.  Wives become advocates.  Friends become scarce.  Amid all of this, the Veteran and his or her family must figure out how to navigate the VA system to maximize benefits that they don't even know exist.  It was this last piece that Erinn and a recently-formed ALS System of Care redesign team sought to improve.  Over the past year, the team has been working on what may be an unprecedented project to improve the quality of care for patients with ALS.  As a result of the dedication and commitment of this interdisciplinary team of clinicians, Veterans with ALS now have a one-stop clinic they can attend to triage all of their medical, social services, and equipment needs.

“We now have many of the answers we didn’t have before starting this project,” says Erinn, the leader of this systems redesign project.  “Before, there was no consistent, standardized process in place at the Providence VAMC to help Veterans with ALS navigate through the maze that is the Veterans Administration, both on the healthcare side as well as the benefits side.  There were no evidence-based practices implemented for treating Veterans with ALS.  There were no standards of care or equipment strategies in place.  Each Veteran painstakingly carved his or her own path through the system to get pieces of equipment, oftentimes too late to use by the time it became available.  In many cases, the Veteran and family were left to fend for themselves.”

But this project has changed all that.

The team broke down the project into four, more manageable 100-day projects.  Each phase had a patient-centered focus as well as a VA clinic focus in an attempt to balance the scale and ensure staff was equipped to handle the growing needs.

Phase I emphasized the need to decrease the wait time from diagnosis to initial visit to the SCI/ALS clinic.  It also paved the way for ensuring that every piece of equipment for a patient was ordered in a timely fashion under the “STAT” (priority) category.

Phase II took the clinic further into patient-centered care by increasing the number of open slots each month from two to four and offering both a morning as well as an afternoon schedule to better accommodate patient and family needs.

Phase III focused heavily on clinical documentation to ensure that all information was being captured and that documentation was occurring in a timely and consistent manner.  This phase also worked heavily on the clinician toolkit and addressed the patient’s questions about equipment and equipment return policies.

The project is currently on phase IV—the final phase--which consists of completing a comprehensive professional resource guide and educating staff within the Providence VAMC on the availability of the ALS clinic.  The patient resource guide was actually the brainchild of another Veteran with ALS—William (Bill) Szeliga.  Bill is the archetypical example of a well-educated and self-advocating Veteran.  Having nobody to help navigate his path, Bill forged ahead on tips and hints from different departments.  One day he asked Erinn why there wasn’t a resource guide—why Veterans couldn’t have a resource that would help them with all the available services.  “How hard could it be to put a few things down on paper?” Erinn thought.  Bill started the ball rolling by providing Erinn with a four-page typed list of resources.  This document served as the springboard to the current ALS Guidebook.  Soon, this patient resource guide began to take shape with the input of clinicians, staff, and other ALS patients.  The patient resource guide includes the names and contact information for all of the key ALS team members, a list of all of the services that the VA can provide on an as needed basis; and a wealth of information regarding equipment, grants, and additional support systems.   

The plan, Erinn hopes, is for this project to serve as a VA best practice—to set the “gold standard of care.”  When asked to further explain “gold standard of care,” Erinn quickly responds: “when there are no more John Antonizio's or Bill Szeliga’s having to carve a path to the great care that the VA can offer during this difficult journey.”


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