Editor’s Note: a patient referral to PRP support group If 27 adults and the parents of children diagnosed with juvenile onset were assembled in a room and asked if their dermatologist told them how to access a PRP patient advocacy organization, only three would raise their hands. The fact is, 27 fellow PRPers assembled in a “digital” room at the PRP Facebook Support Group website. Here’s what we learned.
When dermatologists do their job…
Nicola G (Central Otago, NZ) has a PRP-savvy dermatologist. Dr.Martin Keefe, MD, one of 61 dermatologists in New Zealand, introduced Nicola Galt to DermNet NZ, a website developed by the New Zealand Dermatology Society. At the time, the website only listed the PRP (email) Support Group. Today, the PRP Alliance is also listed. More recently Meagan W (San Luis Obispo, CA) was given a printout from DermNet NZ which was her introduction to the PRP (email) Support Group. Karen B (Mold, North Wales) reports that in 2013, her dermatologist recommended the British Association of Dermatol- ogy’s website, but she had already found the PRP (email) Support Group by then.
When patients or parents do the dermatologists’ job…
“I wasn’t referred to any support/advocacy groups but found support under my own steam,” explains Alan T (Broxburn, Scotland). “I think it would be very helpful if dermatologists made newly diagnosed people aware of the support group and its work. Their emphasis often seems to be on dry, scientific facts and figures, which may be interesting but don’t help you figure out how you’re going to get thru this thing. People really need the emotional support only fellow PRPers can give.”
Often, the patient educates the dermatologist as Bridget H (Mechanicsburg PA) notes. “I was the one who educated my doctor on the PRP Alliance website and the PRP Facebook Support Group. They were impressed with how much I knew, and was wondering where I had found my information.”
If Brenda M (Kent, England) had been referred to a support group, she would have had “a lot less stress and anxiety with regard to finding help.” Instead she independently located the British Association of Dermatology’s website where she reports tha“the information was dreadful.” Brenda quickly adds, however, “There is a new and improved PRP ‘Leaflet” and will hopefully link to the PRP Alliance and the PRP Facebook Support Group. In the case of Chelsea B (Spokane WA), her diagnosing dermatologist wrote pityriasis rubra pilaris on sticky note and sent her on her way. “I did all own research and found the PRP (email) Support Group on my own.” Linda D (location withheld) remembers being left to fend for herself. “I was given no website to contact, no support group information, no pamphlet, no information of any sort. I was told I could get more information by searching for ‘PRP’ on the internet. And this was a teaching medical university. I found more info from the PRP Facebook Support Group than from anyone in the medical field.”
Why are dermatologists reluctant to refer patients to support groups?
Referral to a Dermatology Patient Advocacy Organization should be part of any dermatologist’s treatment plan. There are at least two reasons why it’s not. 1. Security of patient health information. 2.Liability. Not all support groups may be legitimate. There have been instances where patients have fallen prey to stalkers. Aziz T (Laurens, South Carolina) suggests that “asking doctors to refer you to a non-medical support group can lead to some hard liability issues. An option maybe to give doctors leaflets with the support sites and have a disclaimer printed on it so they can give it to the patients without being liable. My dermatologist was not aware of any of support groups. In fact, he thanked me when I gave him a copy of the PRP Physicians Registry with the PRP-savvy dermatologists in South Carolina. He also has a PRP Alliance coffee mug. See Referral Mug Program. The PRP Alliance is a dermatol-ogy patient advocacy organiza- tion. We belong to the Coalition of Skin Diseases and have recently joined the effort to establish the International Association of Dermatology Patient Advocacy Organization — the mother of all DPAOs — to be based in Geneva, Switzerland in the shadow of the World Health Organization. We have also applied to become a member of the National Organization of Rare Disorders.
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