The pandemic has significantly worsened the already difficult situation for psoriasis sufferers. Access to most clinical centres is severely restricted for patients. In Poland, as many as 1.2 million people are affected by this disease, a huge group in need of support, as psoriasis is a disease that manifests itself on the skin and, in addition to lesions and pain, often takes a toll on patients' mental health. To meet the needs of patients and their relatives, the Amicus Foundation has launched the nationwide 'Psoriasis PSOs' helpline.
The coronavirus has had a significant impact on the day-to-day operation of the outpatient clinics, some of which have temporarily suspended their activities, others have been temporarily used to combat the virus, and still others have only been accepting patients by teleportation - or continue to do so. All these aspects have meant that the start of appropriate treatment for many psoriasis patients has been greatly delayed. And time is of the essence for these people: lack of treatment means that psoriatic lesions can worsen, the patients' mental condition and the patient's entire body suffer as well.
Recent times have been particularly difficult for people affected by chronic, inflammatory skin diseases like psoriasis. About a year ago, I heard from one of the dermatologists with whom the Amicus Foundation cooperates that the situation for psoriasis patients had been very difficult up to that point, but that it would not be as good as it had been... Another specialist said that he had never had to deal with such a high level of psoriasis in patients during his work. More and more people started coming to the Foundation every week, needing support. It wasn't just about access to a doctor or modern treatment, it was often also about patients' mental health problems. We carried out a survey which showed that more than 90% patients felt that their illness was worsening or significantly impairing their quality of life. Almost one in 10 patients had heard a diagnosis of depression in the last six months. At some point I thought it was time to do something to improve their situation, a patient helpline plan was created with coordinators across the country who would be able to guide patients and really help - says Dagmara Samselska, President of the Amicus Foundation.
PSOs Psoriasis" helpline
Helping all those affected by the COVID-19 pandemic with psoriasis treatment is extremely important. That is why the Amicus Foundation has decided to take action - the "PSOS Psoriasis" patient helpline is being launched, thanks to which the barriers standing in the way of patient education about psoriasis and its effective treatment will be broken down.
How does the helpline work? The patient can call the number 530 812 500, will be able to obtain from the hotline coordinator the most important information related to the availability of dermatology clinics and outpatient clinics where they can receive the necessary care. The helpline coordinator's task will be to regularly contact and cooperate with doctors at psoriasis treatment centres throughout Poland. In this way, patients contacting the helpline will receive confirmed information on the location and work of the centres during this particularly difficult time. The helpline coordinator will also provide information on the necessary documentation, as well as psychological support as part of the 'Psychologist for Skin' programme, run by the Amicus Foundation. The helpline is open Monday to Friday from 10 a.m. to 6 p.m. On other days, patients can use the contact form available at www.psos.pl.
Knowledge and support is important
As part of the project "PSOs psoriasis" In addition to the helpline, the Foundation, in cooperation with experts, has planned:
- regular online educational meetings on psoriasis treatment,
- online discussions with experts from centres across Poland,
- online meetings with a psychologist.
The first webinar with Prof Joanna Narbutt, National Consultant in Dermatology and Venereology, will take place on 16 June at 7.00 p.m. For more information, visit www.psos.pl.
The project "PSOs Psoriasis" The Amicus Foundation is supported by: The Medical Centre for Postgraduate Education in Warsaw, the National Consultant in Dermatology and Venereology, Dermatology Clinics throughout Poland, and the companies AbbVie Polska, Janssen-Cilag Polska, Novartis Polska and Pierre Fabre.