Even Experts Need Help Sometimes
After living with psoriasis and psoriatic arthritis in our household for 13 years, you’d think I could maneuver the ins and outs of these diseases like the back of my hand. I stay current on the newest drugs to hit the market, diets to help with inflammation, getting checked for comorbidities, and natural ways to deal with pain. I could handle whatever psoriatic disease was going to throw at me.
Wow! Was I living in a fantasy world!
Rating Your Health Care Team
It is important to have a doctor and health team who looks out for you – an office that helps you get your meds on time and in a way that doesn’t make you want to tear your hair out. We thought we had that. Turns out, we didn’t.
Last summer, I spent a chaotic month of back and forth with the insurance company, doctor’s office and specialty pharmacy to try to get my son’s biologic medication. After screams and tears, I discovered that our rheumatologist’s staff was failing at nearly every step. We loved our doctor, but I would rate the staff as a measly one star.
We needed a change.
Asking Friends for a Referral
I put out feelers in my area’s arthritis community to try to find a new rheumatologist. I vetted our referrals and found most doctors were located too far away from us, not knowledgeable in psoriatic arthritis, or were not accepting new patients.
I was striking out left and right. I needed more help.
Patient Navigation Center
I’ve been a volunteer with the National Psoriasis Foundation for many years and have often recommended its Patient Navigation Center for newly diagnosed patients with psoriasis and psoriatic arthritis. This free and personalized service helps patients and caregivers with access to health care issues and provides information to live a healthier life with psoriatic disease.
As of April 1, 2018, the Patient Navigation Center has served more than 14,000 patients and caregivers. Its staff does not give medical advice and the program is not intended to be a substitute for doctors, but it does work one-on-one with people to provide resources needed to improve health for all affected by psoriatic disease.
This is great news for newbies starting out with a diagnosis with psoriatic arthritis, but after all of these years with this disease, I considered myself an expert. I wasn’t sure how the Patient Navigation Center would benefit me. Well, sometimes even experts need help.
My Navigator, Natalie
Running out of options to find a new rheumatologist, I contacted the Patient Navigation Center and was matched with Natalie. To be honest, I didn’t have much hope she could help me. I couldn’t have been more wrong.
She listened to me vent about my current rheumatology staff that left me in tears. She provided comfort in letting me know that the health care system can be very challenging and not to give up. It was nice to receive this support and know I didn’t have to go it alone.
Questions and Answers
Besides providing comfort and being an ear for me to vent, Natalie gave me clear answers to my questions.
Since my dermatologist and staff are rock stars, should I have my dermatologist manage my joint care, too? Natalie said that some patients do go that route, but she discouraged it. Having a rheumatologist who specializes in psoriatic arthritis is important. Joints and skin are quite different and having experts in both areas is beneficial to my overall health.
How do I find a new rheumatologist? Not only was Natalie able to get me a list of rheumatologists in my area, she even contacted their offices to find out if they were accepting new patients and how quickly I could be seen. Amazing!
Is there anything I can do to make sure we get our medications on time? Since our biologics are used to treat both psoriasis and psoriatic arthritis, Natalie suggested having our dermatologist prescribe the medication, not our rheumatologist, could be advantageous. This switch seemed like a great idea. We will still see our new rheumatologist, but, for now, our dermatologist will write the prescriptions. Thankfully, our dermatologist is very proactive in coordinating care with our rheumatologist. This was a win-win for us.
Natalie has made it a point to follow up with me to make sure my care is still going well. Knowing she is always just a phone call away has really lifted weight from my shoulders. I know exactly where to go if I need more help or have questions in the future.