I’m back from my trip to the NIH. The bus ride was long, but worth every penny of the $13.50 I paid to ride it 😀 I must tell you that there are certain things that make a good impression on me. Things like superior customer service; people or businesses that pay attention to details and an organized process, etc.. My experience at the NIH was all of these and more. I am sure that with the massive complex of so many departments/divisions within what appeared to be a small city that is known as the NIH, there are mistakes that happen. But what I observed looked like an incredibly “together” institution which has refined their patient protocol process like a well oiled machine. There is a smooth and easy process that begins at the security check-in (much like you experience at the airport) which moves you to the main building and on to the admissions check-in. Now we have all been through this kind of admissions scenario (probably many times) and it is probably best described as benign and ordinary (albeit sometimes frustrating). But I felt that there was an added level of professionalism than I do not typically encounter. I had a very cheerful woman who checked me in very quickly. I observed that she had my chart/folder ready when I arrived. After completing the information and handing me my chart, she escorted me down the hall into the main corridor to explain exactly where I needed to go next. I was impressed. She could have pointed the way from her desk, but instead, took the time to walk me down the hall. Call it a small detail, but that doesn’t typically happen for me and she didn’t even know about my navigational disability. It was the first ingredient to my very positive first impression. I then moved on to the Dental Dept. where the beginning of my visit and the majority of my day was spent. The day was filled with a variety of nurses, doctors, dentist and staff workers that I encountered in my various department travels. What really caught my attention was the friendliness of every person I encountered no matter what their title was. I appreciated the fact that the Dentist and Doctors helped to explain and educate me about everything I was introduced to during my day. From explaining the exact and precise details of what test was getting ready to happen, how the test is conducted; and the BIGGY for me..what the results were (if they knew them right on the spot), it felt like an alien patient experience for me. I would have asked to be pinched to see if it was real, but the Dentist took care of that when she numbed my lip for the biopsy. The coordination of my day with the 3 doctor’s appointments; testing and labwork was so effectively handled that it was as stress free as it could be (less the uncomfortable invasive parts). Not once did a doctor/nurse make me feel as if I had to present my symptomology in rapid-fire format like I am typically conditioned for. I was made to feel as if I was their only patient and I could ask any and all questions that I wanted without feeling like a timer was running. WOW! I have a lengthy medical history and have seen lots of medical personnel in my life, but I do not recall having ever had such a positive medical experience like my day at the NIH, or at least not for many years.
I have to say that I hope my posts are not sounding too negative. When I re-read them, I sense a little under current of patient anger (for lack of a better term). And if I am being totally honest, I do have a healthy dose of patient anger and frustration from a lifetime of medical issues, doctors and institutions. I would venture to say that many of us Sjoggies (and other difficult to diagnose patients) do. We are more conditioned to NOT be treated as I was at the NIH. We are often met with people who question our symptomology; are skeptical of our pain level and treat us like we are either: pain med drug seekers or neurotic. It is easy to see why patients start to harbor negative feelings about their experiences of medical diagnoses and care. But it is not my intention to rant in every post about the flaws in the medical system or in specific, the flaws and problems with diagnosing Sjogren’s Syndrome. I simply want the patient perspective to be heard.
So here are my questions. Why aren’t all patients treated with the same professionalism and respect that I was at the NIH? Should I assume that the NIH is so well funded that the patients are the lucky beneficiaries of a higher level of treatment? Could it be that the NIH is accustomed to dealing with seriously ill and hard to diagnose patients that have complicated variables, and therefore offer a more patient-sensitive standard of care? I don’t know the answers to those questions and probably never will. But I will say that I understand why people traverse the United States and even internationally, to receive the NIH standard of care. This was the kind of experience that makes a disheartened patient have hope again, that there are institutions and doctors that will give them the kind of care they deserve.