I write this sitting in my 18th century barn conversion less than 10 miles away from Benjamin Franklin's ancestral village. As far as I'm aware, I'm not related to him, but this being Northamptonshire in the English midlands, nothing would surprise me. Unlike the great man of politics, invention, and postal service, I do not own a fur trapper's hat. What we do have in common is what lurked beneath it.
His diary entries and writings of the 1770s make detailed note of a flaking white scurvy, which variously covered his trunk, legs, and scalp. I, along with millions of others worldwide two and a half centuries later, am all too familiar with the plaques of psoriasis, which appear at will anywhere on the body. Fortunately, no clinician has suggested taking Belloste's pills, although some treatments, western pharmaceutical and otherwise, hold as little appeal now as they would have done then.
Franklin writes that he first observed a scurf on his head when he was in his 60s. There we part in our shared experience. Whichever dermatology textbook you have read, my psoriasis life could be lifted straight from its pages. First appearing at the age of 11 years, psoriasis was followed by psoriatic arthritis in my mid-20s.
"Nit nurses" were a common feature of primary schools in England in the 1970s. Children waited patiently in line to have their scalps inspected by the nurse hunting for the dreaded nits. Standard practice was to recommend using a treatment shampoo as a preventative measure, which my parents duly did. Almost immediately, a red rash appeared. At first, small patches sprang up, but then, white flakes spread until entirely covering my scalp. The nit nurse had little idea. When neither eczema nor cradle cap seemed to fit the bill, a trip to the family general practitioner was in order. Moreover, that was my first piece of good luck. In the days when a general practitioner was responsible for the care of generations of the same family, the man who had delivered me a decade earlier had a good rummage around my scalp and immediately recognized the familiar scales. To be doubly sure, he recommended I see a dermatologist. My mother had seen one some years before and recalled the lovely man she had seen. Although he had subsequently retired, he was still practicing privately. Furthermore, that was my second piece of good fortune.
Dr. Richard "Dickie" Coles was the single most important person in my psoriasis life. An avuncular man with a broad ready grin, he taught me everything I needed to know to live a life with an incurable chronic disease or two. Not that I realized at the time, of course. It is with the benefit of 35 years of hindsight that my appreciation of his care continues to grow. He was the most special of clinicians. With a particular interest in psoriasis, he established the first Psoriasis Association group in Northampton. It developed to become the largest patient support dermatology nonprofit organization in the United Kingdom. At a time when it was deeply unpopular, he believed in educating patients to help support themselves. His was a collaborative approach. He was the medical expert, but we, the patients, were the experts in the condition and its place in our lives. Magnifying glasses propped on his head, and he would lower them to scrutinize my skin, not afraid to touch it, feeling how it was on any given visit. Skin inspection over, I would receive a private tutorial on the history of skin conditions and their treatments. Always modest, his knowledge spanned treatments across the decades. Some useless, some effective but with dubious side effects, he shared his knowledge freely. Knowledge was something to be shared, not held selfishly. His view was that I had better things to be doing with my summer holidays than spending them as an inpatient at the local hospital. If I really was at my wits end, then he would, of course, have referred me to one of his colleagues at the local National Health Service hospital. Did I mention he was wily too? He knew continuing my relationship with him was more important than one summer spent in hospital. I would dig in and carry on with the topicals. So our relationship continued for 10 years spanning school and university, right up until law school.
Taking the late Dickie Coles's approach as The Best, what do The Good, The Bad, and The Ugly of healthcare professionals look like? Fortunately, the smallest in number, The Ugly, are so lacking in empathy, entering dermatology was a surprising career choice. Abrupt, rude, and unwilling to consider the patient's perspective, their view of patients is as passive recipients of medical treatment (for which an appropriate level of gratitude should also be expressed). To them, The Patient is little more than an object. Rather than simple indifference, their approach appears an active choice: to be positively unpleasant to patients. It is the matron who humiliated me by scolding me as I stood naked in a phototherapy cubicle while she held the door open for her passing colleagues to see. It is the professional whom colleagues recognize but, for numerous reasons, shake their heads at and do nothing about. It is the professional who succeeds in so decreasing the patient's sense of worth they dare not speak out. It is the consultant who refuses to be questioned, whose word is final for both colleagues and patients alike. There is an unpleasant consistency to The Ugly behavior.
What of The Bad? It is the indifference, the running short of time, the slipped into bad habits without realizing it, and the horrified when their bad treatment is pointed out to them by colleagues or patients. It is the rheumatologist who insists the patient is damaging her joints and should start on disease-modifying antirheumatic drugs immediately-without even examining said joints, handbag placed in front of her on her desk-and who, none too surreptitiously, pushes up her sleeve to glance at her watch. I was clearly delaying her and should have just agreed to take the drugs. Or the family nurse who expresses surprise at the extent of the patient's skin symptoms when attending for an unrelated examination. When the patient, in turn, expressed surprise at the nurse's unhelpful comments, she apologized profusely, clearly contrite, and explained her comments were prompted by concern for the patient's well-being. Or the dermatologist who was so shy he could barely bring himself to look at the undressed patient before him. The difference between The Bad and The Ugly is the lack of malice and the presence of awareness. It is the absence of consistently poor care. It is the nurse with whom the patient feels able to express concern at her inappropriate comments. It is the professional open to his or her fallibility with a ready apology.
And The Good? Openness, empathy, and collaboration all mark out The Good, the Best, of healthcare professionals. However, that doesn't mean automatically acquiescing to the patient's demands. It can be a willingness to challenge the patient, about the patient's perceived lack of ability, the patient's self-image. Such challenge is calm, polite, and driven by empathy. It is an unwillingness to accept a patient's self-imposed limitations; it is an expectation the patient can do, and be, more. It is a willingness to learn. It is the junior doctor who sought his senior colleagues' opinion and shared articles on complementary treatments with the patient. It is a young man, unembarrassed by his relative lack of knowledge and eager to learn from others for his own sake and his patient's safety, who understood that, after years of pharmaceutical drugs, and in the absence of a cure, his patient may want to explore other options. Moreover, he wanted to ensure she did so as safely as possible.
The Good are, quite simply, the nurses, doctors, pharmacists, and others who see the person beyond the skin. It is the professional who sees the challenges skin disease brings to their patient's life and the impact of it. It is the nurse who understands that, for most people, life with a skin disease often means recognizing a look of disgust or lack of comprehension in others, yet who invariably greets her patients with a smile. A smile and direct eye contact and a handshake. The most simple of human greetings that mean so much to those whose appearance often prompts fear or ignorance in others.
It is the "it isn't rocket science" element of medicine. Yes, the professional should be up-to-date with evidence, research, reports, and differing medical opinion: The professional has chosen to specialize in a specific area of medicine, after all. However, it is the very nature of skin, of the body's largest organ, which is vital to comprehend. It is the understanding that, as animals, humans judge each other by appearance, and when that appearance is unchosen, often uncontrollable, and unwanted, to be treated as acceptable, and accepted, by another human is wonderful. When the world around can pass unkind comments all too easily, the medical consulting room should be a place of sanctuary. For if it is not OK to present as who you really are in the company of your healthcare professional, then where and with whom? That brief period of respite and acceptance can establish the foundations on which the patient can build a more confident version of themselves.
I used to sit in Dickie Coles' dining room, which served as both a waiting room for his skin patients and rehearsal room for his music groups. He accepted me both as his patient and a young musician who played early music on wooden recorders and crumhorns. He accepted me as a whole. I try to remember that lesson every day. It has enabled me to become a lawyer, a wife, and a positive advocate.
How many people with skin diseases are able to accept their whole selves? Why are there so few of note since my fellow Northamptonian? Why, especially, are there so few women?
Back to that man in the hat[horizontal ellipsis] Did he wear it as an affectation to please the foreigners from whom he was seeking funds and political allegiances, or was it to hide his scalp? Or, given clever old Ben Franklin, did it kill two birds with one stone as his Northamptonshire relatives might have said?