The Institute for Patient Rights and Health Education has once again assumed honorary patronage of the educational campaign "Ask about MS", initiated by: PTSR Foundation, Polish Multiple Sclerosis Society and MS-Walcz o siebie Foundation. The second edition of the campaign will run until the end of December 2022.
In addition to building awareness of multiple sclerosis, the aim of the campaign has become to motivate patients to talk openly with medical staff about their disease. In addition, the initiative, through educational activities, aims to support and motivate people with MS to actively manage life with the disease.
- Our research last year showed that as many as 91% people with MS see benefits in an open dialogue with their doctor, so we decided to use interesting activities to encourage them to have a partnership dialogue with medical staff. One such activity was to provide a form on the campaign website to ask questions, which were answered by our experts via webinars or directly in writing. Those who, for various reasons, were unable to attend, had the opportunity to watch the webinar rebroadcasts on the website and, in addition, we placed all the questions and answers in the "answer database" section of the website. - explains Scholastyka Sniegowska, President of the PTSR Foundation.
In 2021, 6 webinars were conducted with the participation of experts such as Prof. Dr. Krzysztof Selmaj, dr. Marzena Maciągowska-Terela, neurological nurse Barbara Tomczykiewicz, dr. Artur Sadowski and psychologist Katarzyna Kucewicz. In addition, the campaign also includes an educational spot encouraging patients to ask questions when visiting their doctor, which is available to watch at link.
- The number of questions we received last year, 224 in total, confirmed our conviction that the essence of our educational campaign is of great benefit to patients who want to co-determine the course of treatment with their doctor. and want to know what options are available to adapt the therapy to their needs - Scholastyka Sniegowska adds.
The most frequently asked questions were:
- MS treatment,
- symptoms in MS,
- quality of life in MS,
- pregnancy and motherhood,
- MS diagnosis,
- SM and COVID-19.
- Having direct contact with people with MS, we know that sometimes, for various reasons, patients do not ask questions and, as declared by respondents in the campaign survey, it is the doctors who more often initiate a conversation about various aspects of the disease. The main reasons for this behaviour are the doctor's sense of lack of interest in the impact of the disease on professional and private life, the perception that certain aspects of the disease are too trivial to talk to the doctor and the lack of time to talk during the visit. Our aim was to show that there are no trivial questions and if only the patient asks a question, he or she will get an answer to it - emphasises Tomasz Połeć, President of the Polish Multiple Sclerosis Society, the initiator of the 'Ask MS' campaign.
- A survey we conducted in 2021 showed that the most frequently overlooked topics when visiting a specialist were the impact of therapy on family and professional life, on fertility and parenthood, and the possibility of changing from the current therapy to another. Thanks to our campaign, it is fair to say that patients 'broke through', as we received a great many questions addressing these issues - he adds.
The campaign also included a series of 5 'Ask MS' podcasts. These were hosted by Joanna Dronka-Skrzypczak, MS patient, health educator and psychoeducator in the field of psychosomatics and author of the YouTube channel 'O, disease'. The podcast series features conversations with experts in various fields such as:
- PhysiotherapyThe guest of the episode is Joanna Tokarska, a physiotherapist with over 20 years of experience, blogger and youtuber. She is the author of the vlog and blog under the same title Fizjopozytywna. Professionally and by avocation, she is involved in physiotherapy, particularly neurorehabilitation.Episode title: "Can I get tired? - All about physical activity in multiple sclerosis through the eyes of a physiotherapist."
- SociologyThe guest of the episode is Natalia Tur, who is a sociologist by education and a blogger and youtuber by passion. She runs the blog www.nishka.pl and the YouTube channel Natalia Nishka Tur, where she shares interesting facts about social psychology and communication.
Episode title: "How to talk, how to respond - i.e. communication and relationships when MS comes into your life."
- Psychology
The episode's guest is Katarzyna Kucewicz, a psychologist, psychotherapist and sex therapist who has been working with chronically ill patients, their carers and helping them cope with their illness for over 10 years. She is a regular columnist for Wysokie Obcasy magazine and additionally runs an Instagram account called psychologist on insta.
Episode title: "My psyche is going down - depression and anxiety disorders in multiple sclerosis - when and where to get help?".
- Neuroscience
The episode's guest is Dr Joanna Podgórska, a biologist and neurobiochemist (with a specialisation in neurochemistry) from the Institute of Experimental Biology of the Polish Academy of Sciences in Warsaw. Scientific consultant, author of scientific and popular science publications, monographs, articles on medical and dietary topics and educational materials.
Episode title: https://open.spotify.com/episode/0Sk5T3n3gTXB1q445ehRIj
- Neurology
The episode's guest is Jacek Zaborski, MD, PhD, a neurologist and Head of the Neurology Department (with Stroke and Neurological Rehabilitation Sub-Department) at Międzyleski Specialised Hospital in Warsaw.
Episode title: "What did you forget to ask your neurologist? - Multiple sclerosis: diagnosis, treatment."
- Being aware that a better understanding and knowledge of multiple sclerosis and of one's own expectations of the disease enables better coping with it, we have prepared a series of podcasts with specialists in various fields. As the host of the podcasts, we invited Joanna Dronka-Skrzypczak, who, as a person with MS, knows best what other people with chronic illnesses struggle with on a daily basis - Malina Wieczorek, President of the SM-walcz o siebie Foundation. - Most often, the diagnosis of MS is heard by so-called young adults, i.e. people in their 20s and 40s who are at the beginning of their careers, planning to start a family or are young parents who, at the same time, have to face the diagnosis. That is why we wanted the podcasts to show such people how to approach the subject of treatment and living with the disease in a multifaceted way so that it does not caused so much change in their lives - Malina Wieczorek adds.
To meet the needs of patients, educational activities are planned to continue this year. We will keep you updated on new campaign activities directly on the www.zapytajosm.pl and on the social channels of the campaign initiators. - Questions are still encouraged and we will be answering them in the same format as last year. We are also preparing some new activities, but I can't reveal anything at the moment. Please keep an eye on us - I think it's worth it - concludes Tomasz Połeć.
More about the campaign at www.zapytajosm.pl.