I’ve been through a lot of doctors over my 26 years as a wheelchair user. Some I remember fondly, like my first physiatrist who, with a wink and a nod, granted 18-year-old, newly-injured me a medical marijuana permit to manage my spasms. Some less so, like a college-era urologist who almost talked me into a suprapubic catheter surgery I didn’t need.

One of the main lessons I’ve learned is that a doctor’s level of knowledge about spinal cord injury doesn’t always correlate with the quality of care they provide. One doctor had decades of experience working at a big-name, SCI model system rehab center. She told me I had too little function to be fully independent. So, I found another doctor. My current primary care physician didn’t have much SCI experience when I started seeing her. But I’ve held onto her for 18 years, through three clinic changes and more insurance providers than I can count.

Looking through the New Mobility archives, polling our social media audience and reading Tim Gilmer’s new story, “When Wound Care Fails: Why Disabled Patients Need Doctors Who Listen,” confirmed what my own lived experience suggested. Yes, there are a lot of doctors out there who just don’t get it. But, even in this era of profit-maximization and shrinking appointment times, it’s still possible to find doctors who can offer the care and understanding we deserve.

First Things First

Think of your primary care provider as the point guard of your medical team. The team’s goal is to maximize your health and wellness. The point guard — for some with SCI this is a traditional PCP, while for others it’s a physiatrist — doesn’t do everything. Instead, they serve as the primary point of contact — the person who brings the ball up the court every possession. Their job is to understand you and your needs and to pass the ball to others when they have a more suitable skill set.

There are a couple of important factors to consider when looking for a primary care doctor. Kim Anderson-Erisman is a C5 quad and professor of physical medicine and rehabilitation at Case Western Reserve University. In Bob Vogel’s “How to Find, Train and Work with a Primary Care Physician,” she explains her criteria for finding a PCP are that they need to be good communicators and eager to learn about her disability.

“I’ve had quite a few primary care physicians and found that most are open to learning about SCI. I know my body and my disability, so I help them learn, and we have developed good doctor/patient relationships,” she says. “On the other hand, I’ve fired PCPs who haven’t been interested in learning and found another PCP who is.”

Anderson-Erisman’s last point is critical. Be willing to fire a bad doctor. If you take an appointment with someone who seems more likely to talk over you than listen to your needs, don’t be afraid to keep looking.

Other wheelchair users often cite willingness to learn as a primary indicator of a good doctor. That is certainly the case in my experience. I’ll add a willingness to listen and take a patient seriously as other good indicators. No disability is the same, and we know our secondary complications better than anyone. The best doctors are willing to listen, ask questions, and then use their experience, knowledge and resources to find solutions.

Other tips:

1. Call ahead to ask if the offices are accessible and if they have accessible diagnostic equipment like exam tables and scales.
2. Ask about their connection to a hospital network and their referral network. Remember the point guard analogy — a PCP is only as good as their teammates.
3. Consider how responsive they are. UTIs, wounds and other complications pop up suddenly, and quickly accessing anti-biotics, wound care or other treatments can keep an issue from escalating.
4. Be your own advocate. John Beer’s article, “How to Get the Most Out of Your Medical Checkup” gives a good overview of the tests and preventative care you may need to fight for.
5. Shannon Kelly, a manual wheelchair user in Chicago, has found that a paid concierge service ($100-200 a month) has been well worth the money because it’s meant more time with her doctor and less waiting for appointments and tests. Read her and other United Spinal members’ tips for finding a good doctor.

Putting the Special in Specialist

With your point guard primary care doc running the show, you should be able to weather the majority of health ups and downs, but you also need good specialists to be able to step in and handle more complicated situations.

If good communication skills and general knowledge are the hallmarks of a good PCP, deep subject mastery and problem-solving skills are what you should be looking for in a specialist. If you end up with a world-class communicator who travels across the country for a house call like Tim Gilmer, consider yourself lucky, but generally expect to sacrifice a little bedside manner for expertise.

Figuring out which specialists really know their stuff can be difficult, so it pays to do your research, ask around and eventually, trust your gut. Bob Vogel wrote about how doing just this paid off for Brook McCall when she found herself dealing with a syrinx that threatened her health and mobility. She met with multiple specialists where she lived, but didn’t feel confident in their diagnoses. So she sought out a nationally-renowned expert who eventually operated on her. Her advice? “Do not settle.” Make sure you are comfortable with your treatment plan.

New Mobility Editor-in-Chief Ian Ruder took McCall’s advice to heart when he was battling a mysterious urinary infection. He ended up cycling through multiple urologists and an infectious disease expert before returning to his original urologist and applying all the lessons his search had taught him. His experience is more evidence that while refusing to settle can result in more costs and more hassles, it is worth the extra effort because, in the end, you only have one body.