Joel Diaz, a 41-year-old father from Columbus, OH, deals with two neurologic conditions: Parkinson's disease and dystonia, a movement disorder that causes involuntary muscle contractions in his left leg and arm. His usual treatment for dystonia is a Botox injection every three months, which prevents his toes from curling under his foot. But Diaz has been waiting for his next round of injections since February. He was told at an appointment in June that his injections cannot be scheduled until August. The reason? Pandemic-related staffing shortages that have beset the health care industry. The wait is causing Diaz a lot of pain and discomfort. “I cannot walk properly, and I struggle to get around,” he says.
Stories like Diaz's are increasingly common. The pandemic has created long wait times to see doctors or receive treatment. This is partly because of a backlog of rescheduled appointments for patients who'd been reluctant to leave their homes for fear of contracting COVID-19. It's also because many health care providers are burned out, creating workforce shortages at different times over the past couple of years, according to a report from the US Department of Health and Human Services.
Lack of staff places an extra burden on neurology practices, since there was a dearth of neurologists even before the pandemic. A 2013 study published in Neurology, for example, reported that the country needed 11 percent more neurologists at the time. Demand and shortages would only continue to rise, the study authors predicted.
And it's not just neurologists who are in short supply. Since the pandemic began, there has been an unprecedented exodus of health care workers: Nearly one in five have quit their jobs, according to a poll of 1,000 US medical personnel conducted in September 2021. Burnout, low pay, long hours, and feeling undervalued are some of the reasons people give for leaving, and it's happening at all levels, from administrative assistants and medical technicians to nurse practitioners and physician assistants.
It's a nationwide problem, and no settings—doctors' offices, hospitals, or academic institutions—have been spared. Randolph W. Evans, MD, FAAN, a neurologist in private practice in Houston, looked for a medical assistant for more than a year after two of his assistants resigned in April 2021. Before the pandemic, when he'd post a job, he'd receive dozens of responses from qualified applicants. This time, most of the people who responded had little to no relevant experience.
A lack of staff can mean not enough people to field phone calls, make office appointments, take vital signs, do medication precertifications, or submit insurance claims. For Dr. Evans, it has meant working longer hours and doing tasks that medical assistants would have done in the past. Workforce shortages also are resulting in longer waits to receive medical care, according to the nonprofit organization ECRI, which recently named staffing shortages as the top patient safety concern for 2022.
“Medical care requires a team, and each member plays an important role,” Dr. Evans says. “Administrative personnel and medical assistants often offer patients their only interactions with doctors' practices between visits. As with many businesses, any shortages are felt immediately, but we make the safety and well-being of our patients the highest priority.”
The pandemic also has affected the availability of drugs and medical supplies. Some factories shut down, and countries implemented restrictions on the export of certain products, which disrupted the normal flow of goods, according to Prakash Mirchandani, PhD, director of the Center for Supply Chain Management at the University of Pittsburgh. The problem is especially fraught in health care, where the supply chain is fragmented and complex.
“Usually, when you go to the store and buy a product, the packaging says where it comes from,” Dr. Mirchandani explains. “But when you pick up a prescription, you generally have no idea where it was made. Most drugs and products are produced and distributed by several organizations in various countries.”
The closure of a manufacturing facility in China last spring due to a COVID-19 lockdown precipitated the current shortage of contrast dye used for CT scans of the head, which physicians use to check for stroke, tumors, and vascular lesions. “That shortage has affected health care systems across the country, and we are in communication with the manufacturer on a daily basis,” says Steve Downey, chief supply chain and patient support services officer at the Cleveland Clinic in Ohio. “We are monitoring our existing inventory levels across all our locations and implementing conservation strategies, such as repackaging contrast dye in smaller quantities to reduce waste.” Another solution is to bring manufacturing back to the United States, but that takes time, says Dr. Mirchandani. (To learn about other drugs in short supply, such as lidocaine for pain, check the US Food and Drug Administration's searchable database.)
For patients, these shortages translate into difficulty scheduling visits, less face time with physicians and nurses, and long waits for medications and supplies. But neurologists say being proactive can help. These are some things patients and caregivers can do.
Compile Medical Records
Avoid delays by having documentation ready before your visit. This includes notes from previous physicians and any tests related to your condition. “You can request medical records from any facility that treated you in the past,” says Mehyar Mehrizi, MD, FAAN, a neurologist at Baptist Health in Louisville, KY.
“Contact the neurologist's office a month or two before your appointment and ask if there are any test reports you need to bring,” advises Shin C. Beh, MD, FAAN, a neurologist in Frisco, TX, who specializes in vestibular problems and migraine. Typically, he says, a neurologist will need a copy of your most recent brain MRI or CT scan, angiographic imaging of your head or neck, electroencephalogram (EEG), or nerve conduction study/electromyography report.
Having lab and imaging results on hand is especially important because if you need to reorder them, it will delay the scheduling of first-time or follow-up appointments. Some neurologists require that lab and imaging results be done prior to appointments.
Write Notes on Treatments
During a first appointment, a neurologist must assess your medical history, test results, and your own updates—in about 40 minutes to an hour, according to Dr. Mehrizi. Some neurologists may ask for this information ahead of the appointment. Putting together a log of treatments you've been prescribed, including medication dosages and any side effects, may make it easier for your doctor to arrive at a diagnosis or recommend appropriate treatment. If this information isn't in your medical records, jot down as many details as you can remember.
“Insurance companies want to know specifics,” says Dr. Mehrizi. “What was the main treatment? What medicines were tried, and at what dosage and for how long?”
Be sure to tell your neurologist about any nontraditional treatments in case some interact with other treatments. “If you've had acupuncture or physical therapy, or you take herbal medicines or supplements, those are things we need to know about,” Dr. Mehrizi says. “The more thorough the appointment, the less back-and-forth communication that has to happen outside the visit.”
Confirm Referral Status
A referral to a specialist is not always simple or straightforward. Insurance companies often require a primary care doctor to submit data to a specialist before the appointment can be scheduled. It's a good idea to check with your insurance company to see if this is needed. If so, confirm with the specialist's office that your insurance company has preauthorized the visit.
“It isn't uncommon for referrals to get stuck in the queue due to lack of complete data,” says Jennifer J. Majersik, MD, FAAN, chief of vascular neurology at the University of Utah in Salt Lake City. “Consider calling the clinic or office to be sure the paperwork is in order.”
She also points out that a referral to a neurologist may not be necessary if your primary care doctor determines that symptoms can be managed at a general practice.
Don't Get Distracted
Keep the conversation focused on your neurologic condition. Raising unrelated topics can complicate the visit and take away from more important matters, says Dr. Mehrizi. “When I'm seeing someone for migraine or epilepsy, I'm thinking about how I'm going to treat the person's migraine or seizures, and that takes up the entire time allotted for our visit,” he says. For a more general conversation about your health, reach out to your primary care doctor.
Consider Telemedicine
If it is going to take six months or longer for an in-person appointment, ask about a virtual visit, especially if it's the initial step in an evaluation, says Taylor B. Harrison, MD, associate professor of neurology at Emory University School of Medicine in Atlanta.
To get the most out of telemedicine, log in to the portal 15 to 20 minutes before your appointment so you can troubleshoot any technical problems and make sure the microphone and camera are on, says Suzanne Stevens, MD, a sleep medicine neurologist with a private practice in Kansas City, KS. She also recommends writing down questions ahead of time, knowing which pharmacy you use, and asking the doctor to schedule a follow-up appointment or call.
If an in-person appointment is needed, call the office periodically to inquire about cancellations or ask to be added to a list of patients who'll be notified if there is a cancellation.
Be Open to Other Options
If the drug you're used to taking is unavailable, talk to your doctor about alternatives. Joel Diaz, for example, has been offered additional muscle relaxers to provide some relief for his dystonia until he can get Botox.
As a vascular neurologist, Dr. Majersik often needs to order imaging tests. Because of the CT dye shortage, she'll sometimes order an MRI angiogram, which provides similar information.
If you've been sent to a lab or radiology practice that reports a supply-related delay, call another one. “Different labs use different suppliers, so one lab or radiologist may have a shortage while another doesn't,” she says. “A wait time might be reduced if you do a little homework.”
Seek Secondhand Equipment
Many medical devices, including continuous positive airway pressure (CPAP) machines, may be scarce. Earlier in the pandemic, CPAP machines were recalled by a major manufacturer, and now the supply of computer chips for them is limited. Patients with sleep apnea who need CPAP machines can check with hospitals or medical supply stores that may have older models or properly disinfected secondhand equipment for a reduced price, says Dr. Stevens. “Many people who are prescribed these machines never use them or stop using them,” she says. “We can help patients with settings and masks and other supplies while they wait for a new machine.”
Mind Your Health
Taking care of your health is always important, but when there are long waits between appointments, it's even more crucial. Dr. Stevens advises her patients to focus on what they can do now to improve their sleep while they wait for a CPAP machine: eat healthfully, walk for 30 minutes every day, cut out sugar and caffeine, and reduce stress by spending time with family and friends or doing other activities. “These are recommendations we're going to make regardless,” she says.
Diaz says he's learning to accept his temporary limitations. He's also planning to order a scooter to help him get around in case his Botox appointment gets pushed back even further. “It can be tough on my mental health,” he says. “I can easily get down when I can't move or do what I used to do. Learning to be more patient with myself has been helpful.”
Try to Stay Positive
Sometimes even the most proactive approach to getting treatment or care can fall short. “The health care system has been under duress for quite some time,” Dr. Harrison says. “Given the circumstances, we are doing our very best.” Keep in mind the pressures that medical personnel have been facing when you interact with them. Health care worker burnout is so pronounced that the US surgeon general, Vivek Murthy, MD, issued an advisory in May to address the issue.
“It's important to have clear and open lines of communication with your providers,” Dr. Harrison says. “It's also important to voice any kind of appreciation. For overburdened providers who have been working long hours and managing multiple responsibilities under great stress, that is invaluable.”
