Dagmara Samselska, prezes zarządu Amicus Fundacji Łuszczycy i ŁZS, w rozmowie z Forum Leczenia Ran opowiada o nowo powołanej infolinii PSOs dla chorych na łuszczycę. Ekspertka wyjaśnia, jaką pomoc można uzyskać podczas telefonicznej konsultacji. Przedstawia również inne planowane dla pacjentów z łuszczycą projekty.
Agnieszka Baran, Forum Leczenia Ran: W połowie czerwca w ramach projektu „PSOs łuszczyca” zaczęła działać ogólnopolska infolinia dla chorych z łuszczycą. Co zmotywowało Państwa do utworzenia tej infolinii?
Dagmara Samselska: Nasza Fundacja wspiera osoby z chorobami dermatologicznymi oraz łuszczycowym zapaleniem stawów, które jest najczęściej występującą chorobą współistniejącą u pacjentów z łuszczycą.
Na początku naszej działalności sama byłam w stanie odpowiadać na wszystkie pytania pacjentów. Kontaktowałam się ze specjalistycznymi ośrodkami i szukałam dla pacjentów wsparcia merytorycznego u lekarzy, jednak w wyniku pandemii zapotrzebowanie na taką pomoc wzrosło i w konsekwencji nie byłam już w stanie zrobić tego sama. Wtedy pojawił się pomysł uruchomienia infolinii, abyśmy mogli pomagać na bieżąco wszystkim pacjentom, którzy tego potrzebują. Chociaż infolinia działa dopiero od niedawna, to już teraz zgłasza się do nas dużo pacjentów. To, jak bardzo potrzeba tego typu inicjatyw, widać między innymi po długości rozmów z pacjentami. Konsultacja przez infolinię może trwać ok. godziny, czasami nawet półtorej godziny.
Jakie są zasady działania infolinii?
– Żeby skorzystać z infolinii, wystarczy zadzwonić pod numer 530 812 500. Na portalu www.PSOs.pl. udostępniony został również formularz kontaktowy. Jeśli zainteresowana osoba nie może się dodzwonić na infolinię, może się zgłosić za pośrednictwem tego formularza. Koordynator infolinii skontaktuje się z tą osobą i udzieli wszelkiego wsparcia, jakie będzie potrzebne.
Jakie informacje można uzyskać na infolinii?
– Udzielamy informacji na temat łuszczycy i jej leczenia, a także lokalizacji ośrodków, które prowadzą bardziej zaawansowane leczenie ogólne lub leczenie biologiczne. Można dowiedzieć się o kryteriach włączenia do programu lekowego. Przekazujemy również takie dane jak numery telefonów do ośrodków, ich adresy, godziny, w których ośrodki przyjmują, czy długość oczekiwania na wizytę pierwszorazową i kolejną bądź na wizytę pilną. Staramy się przekazać wszystkie informacje, które są potrzebne, żeby zapewnić skuteczną pomoc w leczeniu łuszczycy.
Co się zmieniło w opiece nad pacjentami z powodu pandemii COVID-19?
– Na początku pandemii COVID-19, zanim zostały opracowane rekomendacje dla placówek medycznych w zakresie leczenia pacjentów ze schorzeniami dermatologicznymi, specjaliści nie wiedzieli, czy powinni przyjmować pacjentów na zabiegi. Niektórzy chorzy, którzy mieli wtedy podjąć leczenie, do tej pory czekają na rozpoczęcie terapii.
Pacjentom z łuszczycą często towarzyszy stres, wywołany świadomością choroby, niezadowoleniem z własnego wyglądu i obawą o reakcje innych na występujące na skórze zmiany. W wyniku pandemii COVID-19 dołączyły do tego lęk przed zachorowaniem i niepokój związany z izolacją. Zwiększenie stresu spowodowało, że u wielu osób występują nasilone objawy skórne, którym towarzyszy wyższy stan zapalny w organizmie. Stan ten wiąże się z większym ryzykiem wystąpienia zarówno łuszczycowego zapalenia stawów, jak i chorób sercowo-naczyniowych, cukrzycy, chorób tarczycy, zapalenia wątroby, stłuszczeniowej choroby wątroby oraz depresji. Tych powikłań jest bardzo dużo, dlatego zależy nam, aby pacjenci mieli dostęp do terapii łuszczycy, jak również mogli liczyć na specjalistyczne wsparcie psychologiczne.
Jakie inne działania w ramach projektu „PSOs łuszczyca” Państwo przewidują?
– W ramach tego projektu odbywają się także webinary edukacyjne, podczas których lekarze w bardzo przystępny i empatyczny sposób tłumaczą trudne dla pacjentów pojęcia i procedury oraz dementują niepotwierdzone informacje, które można znaleźć w internecie.
Poza spotkaniami edukacyjnymi mamy jeszcze dwa rodzaje spotkań o nieco innej formule. Pierwsze z nich to spotkania Q&A, podczas których lekarze odpowiadają na pytania pacjentów. Bardzo dużą zaletą tych spotkań jest to, że w każdym uczestniczy lekarz z innego ośrodka prowadzącego leczenie łuszczycy w Polsce. Pacjenci z danego regionu mogą poznać lekarza prowadzącego terapię, dowiedzieć się, jak funkcjonują dane ośrodki, jakie wymogi trzeba spełnić, żeby rozpocząć leczenie w określonej placówce.
Trzecią formą spotkań online w ramach tego projektu są spotkania z psychologiem i koordynatorem całego projektu, czyli ze mną. Wyjaśniamy kwestie, o które pacjent nie zapytał lekarza. Niekiedy odsyłamy do innych projektów naszej Fundacji, na przykład „Psycholog dla skóry”, gdzie pacjenci mogą skorzystać z darmowej pomocy psychologicznej dla osób z chorobami dermatologicznymi.
Czy planują Państwo inne projekty dla osób z chorobami dermatologicznymi, a przede wszystkim z łuszczycą?
– W tym roku planujemy jeszcze kilka wydarzeń, które będą związane z tematyką chorób skóry, m.in. po raz czwarty odbędzie się „Dzień bez kamuflażu”. Podczas tego wydarzenia stawiamy na bezpośredni kontakt ze specjalistami. We wcześniejszych edycjach wydarzenie odbywało się przy Krakowskim Przedmieściu w Warszawie, a w trakcie można było wykonać niektóre badania. Pandemia sprawiła, że musieliśmy ograniczyć kontakt bezpośredni z pacjentami i w tym roku planujemy przygotować „Dzień bez kamuflażu” w nieco innej formule. W ostatnim tygodniu sierpnia codziennie wieczorem będą się odbywały rozmowy online z lekarzami. Planujemy również wykład kosmetologa na temat tego, jak bezpiecznie pielęgnować skórę w chorobach skóry, takich jak łuszczyca czy AZS i stosować różnego rodzaju kosmetyki, oraz warsztaty z wizażystką o tym, jak bezpiecznie stosować makijaż przy chorobach skóry i jak dobrać kosmetyki, aby nie zaszkodziły i nie zaostrzyły objawów choroby. Oprócz tego w październiku planujemy Tydzień świadomości łuszczycy, podczas którego codziennie będzie się odbywał wykład innego eksperta na tematy związane z łuszczycą i chorobami współistniejącymi. Informacje na temat realizowanych przez naszą Fundację projektów znajdziecie Państwo na stronie www.AmicusFundacja.org.
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