Illustration by Mark Weber

Primary care physicians are, as the name suggests, our primary contact for health care. They work with us to keep tabs on our overall health, provide information and guidance, check for potential problems, manage prescriptions and vaccinations, write letters of necessity for equipment and supplies, and provide referrals to specialists. Unfortunately, when you are living with SCI/D, finding a PCP that fits your needs can be a challenge for reasons ranging from the physical accessibility of the office to a doctor’s limited knowledge of your disability.

For information about how to choose a PCP, including what questions to ask, ways to educate them about your disability and how to search for one, we turned to advice from experts and seasoned wheelchair users. Here’s what they had to say.

Choose a PCP Who is Eager to Learn About Your Disability

It’s not easy finding a PCP who can, or is willing to learn how to, work with someone who has SCI/D. “I know that a lot of primary care docs are intimidated by the prospect of taking care of people with spinal cord injuries because we don’t get a lot of training in how to care for people with disabilities,” says Dr. Michael Stillman, a physician and professor with the Jefferson University Hospitals.

In his 2016 presentation, “Primary Care and Spinal Cord Injury: What You (and Your Provider) Need to Know,” Stillman recommends seeing if you can meet with a primary care physician and their staff for free before signing up with them, to ensure they’re a good fit. He suggests that even if you interview a PCP by phone, it is a good idea to go to their office to check accessibility. Keep in mind that although finding a PCP who has knowledge about SCI/D is ideal, they are quite rare. If you can’t find one with experience working with SCI/D, it is important to get one who is open and interested in learning about your disability.

To find a doc who will listen to you — one who may even do some reading and consult with colleagues in order to meet your needs — it is important to know what questions to ask. Stillman’s presentation and Craig Hospital’s module “Changing or Choosing Your Spinal Cord Injury Doctor” both offer helpful lists of questions and criteria for choosing a PCP (see Resources).

Kim Anderson-Erisman’s criteria for choosing a PCP includes finding one who is good at communicating and eager to learn about her disability. “In my 31 years as a C5 quad, 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,” says Anderson-Erisman, a professor of physical medicine and rehab at Case Western Reserve University. “On the other hand, I’ve fired PCPs who haven’t been interested in learning and found another PCP who is.”

Sometimes working with a doctor who doesn’t have a background in SCI/D works out just fine, says Candace Cable, 65. “None of the three primary care specialists I’ve had over my 45 years as a T10 para knew anything about SCI at the start, but all were willing to learn,” she says.  Two years ago, she moved from Truckee, California, to Los Angeles, and her new PCP didn’t have a lot of knowledge about SCI but expressed interest in finding out more, so she gave him a copy of the Christopher Reeve Foundation’s Paralysis Resource Guide. “He read it and really appreciated it. He said the book was an inspiration to want to know more,” she says.

Stillman says finding a doctor who is humble and curious is critical. “Primary care docs need to be aware of what they do and do not know about the care of people with spinal cord injuries, and they shouldn’t be bashful about admitting that,” he says. “But if they do admit that they have a knowledge gap, then they have to be hungry for that knowledge. They have to be willing to go read and consult with colleagues, to reference the literature. They have to want to learn more about your condition and how to keep you as well as possible.”

Ask if the PCP is Connected to a Hospital Network

It’s important to choose a PCP who is part of a hospital network or has referral privileges with one — and it’s a bonus if they’re affiliated with a system that specializes in SCI/D. “An ideal PCP is part of a large hospital system that has access to specialists like urology, gastroenterology and PM&Rs so they are able to say ‘This is above my pay grade, I’m going to refer you,’” says Anderson-Erisman. PM&R stands for physical medicine and rehab doctor.

Retired ear, nose and throat specialist Jon Arnow, 63, agrees that hospital affiliations are important. He never used a PCP in his adult life until the car crash that caused his L1 incomplete spinal cord injury when he was 45. “I found I needed to get established with a primary care doc after my SCI for things like referrals to specialists such as a urologist,” he says. “My primary care physician is connected to a network of specialists in my area.”

For Paul Knott, 67, a PCP’s referral privileges are as important as their location. Knott has had three PCPs in his 35 years as a C6-7 quad.  “Two years ago, I dropped my primary care doc because, although he was close by, he didn’t have admitting privileges at my local hospital or access to nearby specialists,” he says. “I found another primary care guy who has local admitting privileges and who is willing to work with me.”

Unfortunately for people in smaller towns, health care systems and specialists are likely to be in urban areas, but it is still just as important to ask your potential PCP which health care systems they have referral privileges with. Cable lucked out, as her PCPs have all had good referral connections. Even when she was living in the small mountain town of Truckee, her PCP was able to refer her to specialists, although some were one or two hours away.

Make Sure the PCP’s Facilities are Accessible

Check to make sure your potential PCP’s office, exam rooms and bathrooms are accessible. It’s a bonus if the office has an accessible exam table, although a study in the March 2013 of Annals of Internal Medicine found only nine of 256 health care facilities had height-adjustable tables or patient lifts.

Although basic physical exams can be done with a person in their chair, Stillman explains that a comprehensive physical exam requires the patient to remove their clothing and lie on a table. But like many people with SCI/D, Anderson-Erisman says that due to the difficulty of changing into a hospital gown and transferring, as well as lack of accessible tables, all of her physicals have been done with her sitting in her chair.

If your PCP’s office doesn’t have an accessible exam table, ask them if they are willing to think creatively. Cable’s PCP has his assistants carefully pick her up and transfer her to an exam table when needed. When Knott’s PCP has to do a skin check on his back side, the standard exam table doesn’t cut it. “I told him there is no way I will be able to use his exam tables because they are too hard and I’m in danger of falling off. I need a hospital bed with rails,” says Knott. “I wasn’t willing to budge on this.” To Knott’s physician’s credit, he orders a bed brought over from the hospital when Knott needs a full exam.

Pick a PCP Who Will Advocate for You

Having a PCP who will go to bat for you when you need insurance to pay for something is a must. Whether it’s a simple prescription refill or a new piece of equipment, the right words and references can go a long way. “My primary care docs have been ‘Johnny on the spot’ with writing letters for work accommodations and DME equipment,” says Knott.

Anderson’s current PCP is also very good at advocating for her. “She is still coming up to speed about SCI, but she is really open to me telling her stuff,” says Anderson. “Last year I got pneumonia and I was trying to get a prescription for a cough assist machine. She didn’t know what it was, so I gave her information on it, and she put the prescription through.”

Embrace Electronic Medical Records to Enhance Communication

Electronic medical records apps are becoming a common way of communicating non-urgent questions or needs with your PCP. Using your PCP’s EMR app provides several advantages: It enables clear communication without the need to wait on hold or leave a message with your doctor; it makes it easy for your doctor to clearly respond back; and you can get email reminders when test results or doctor comments are available, as well as appointment reminders and updates on ongoing issues. EMR also enables you to go back over your medical chart, look at test results and compare them with previous ones. “My PCP is set up with ‘My Health Online,’ a web portal that is really good at sending me email reminders of visits,” says Knott.

A caveat about EMR apps: Like any record-keeping system, they have a potential for preserving inaccuracies that remain indefinitely in your chart. Arnow, a medical consultant for Social Security Disability Determination, has come up with a name for this problem: “cut & paste, carry-forward.”

“It is sometimes difficult to get accurate information from EMR notes because of ‘cut & paste, carry-forward,’” he says. “I recommend asking your doctor for a printed copy of his chart notes following each visit.” The notes should include what you and your doctor discussed, any type of test or exam recommendations, suggestions, referrals, and prescriptions. It should also include a list of your current medications and vaccinations. Many practices will hand you printouts of your chart notes at the end of your visit. If they are not offered, you should ask for them. It is important to check the notes to be sure they are accurate.

Ask Others for Recommendations

The last task is to start looking for your own PCP. Arguably the best place to start is with a recommendation from another person whose SCI/D is similar to yours. Options to do this include asking friends with similar disabilities, querying a local support group, like your local United Spinal Chapter, or posting a question in a relevant online forum or somewhere like Rutgers Care/Cure forums.

When searching for a PCP, keep in mind that not every doctor will meet all of your criteria. Your choice of PCP may come down to availability where you live, whether a particular PCP is taking on new patients, or whether they accept your insurance plan. Choosing will be a balance of which of the above questions are negotiable and which are most important. Hopefully your choice of PCP turns out great. However, if it isn’t a good fit, you always have the option to let them go and choose another one. It is important to remember that the ultimate person in charge of your health care is you.

Resources
• Caring for Persons with Spinal Cord Injury, eprimarycare.onf.org/Resources.html
• Craig Hospital: Changing or Choosing Your Spinal Cord Injury Doctor, craighospital.org/resources/changing-or-choosing-your-doctor
• Primary Care and Spinal Cord Injury: What You (and Your Provider) Need to Know, [PCP info at 16 min]: sci.washington.edu/primary/
• Rutgers CareCure Forums, carecure.net
• SCI Primary Care Flowsheet for physicians, eprimarycare.onf.org/rsc_files/SCI_Primary_Care_Flowsheet.pdf
• United Spinal Chapter Network, unitedspinal.org/support/chapter-network/

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A Note About PM&R Doctors

Some people with SCI/D may employ a physical medicine and rehab doctor as their primary physician, and others may have a PCP for basic health needs and referrals but use a PM&R doc to look after their disability related needs. “My current PCP does a good job communicating with me and keeping me healthy,” says Paul Knott. “But now, after 35 years as a C6-7 quad, I’m thinking I should get a referral to see a PM&R for a ‘tune-up’ as well as a possible ongoing relationship to make sure I’m doing everything I should be for aging with SCI.”