The Polish Multiple Sclerosis Society has been in existence for 20 years. It reaches about 6 patients. Almost all activities are undertaken and conducted voluntarily by patients and their relatives. Nevertheless, PTSR is one of the most dynamic patient organizations in Poland.
Everyone who wants to use or uses the help of PTSR or other patient organizations associating people with MS should remember about their voluntary nature. Most of the PTSR branches, except for a few largest ones and the Main Council, do not employ permanent employees, the projects carried out are the work of the patients themselves and their families, so if there is no help, it is because it has not been possible to organize or raise funds for it. However, nothing stands in the way of joining this self-help movement and creating a new, needed form of support, establishing a circle or a branch of the organization. – We lack people willing to work for the benefit of others the most – admit members of the Main Council of the PTSR. – And we can have as much as we create ourselves. Nobody will do it for us
In the field
Currently, PTSR has over 20 local branches and several dozen circles. Moreover, several local organizations cooperate with PTSR. A detailed map and a list of contacts can be found on the website WWW.ptsr.org.pl or by calling the Call Center on SM 0 801 313 333, the call is payable as for a local call. On the PTSR website there is also the “Polish MS Map”, a database that facilitates the search for places where you can get various help related to life with multiple sclerosis: from rehabilitation, a neurologist to psychological support. The database is constantly developed and supplemented based on information from the patients themselves and their families.
Establishing a local circle is not difficult, it is enough to gather 15 people interested in helping the sick and contact the Office of the Main PTSR Council or the nearest PTSR field office, complete the formalities and – go to work … The stairs start later, when you need to raise funds for the daily help for the sick: home rehabilitation or psychotherapy. Although you can get substantive support in the organization itself, the more experienced will help to prepare or settle the project, but you need to have a place to submit the project. Local governments, PFRON and PCPR have less and less funds for this type of activity. Therefore, there are various public collections and the good will of taxpayers – 1 percent. for public benefit organizations. It is also not easy to break through the huge amount of advertising. It is worth remembering that for many people, especially those newly diagnosed or living far from PTSR academic centers, clubs and branches and other local organizations are the only reliable source of information in the current situation of the health service. Without the help they organize, or rather self-help, many patients would not receive any support, they would be left alone with their problems
SM Information Center
The information and support base is primarily the SM Information Center run by PTSR. CISM is located in Warsaw at 3/94 Konstytucji Square. CISM employees receive infoline about MS (phone calls, e-mails, instant messaging) then, depending on the need, they direct the person to a consultant: lawyer, psychologist, neurology doctor. In special cases, when there is discrimination on the basis of illness, the case is referred to the Ombudsman for People with MS. The ombudsman is a lawyer, an attorney employed by the PTSR to defend people with MS whose rights are violated. The most common problems are related to discrimination in access to treatment and rehabilitation, work and ZUS decisions.
It is also worth browsing the PTSR website, reading about the latest research on MS and downloading online PDF publications related to MS. The association is currently the publisher of the largest number of publications on multiple sclerosis and living with the disease, intended for both adult readers and children, including the youngest, 6-year-olds, who are just learning to read. The offer also includes sets of exercises for self-exercise at home, selected depending on the level and type of disability. PTSR also cooperates with the Positive Impuls Foundation, the publisher of the only nationwide quarterly intended for people interested in multiple sclerosis. The quarterly is available by subscription and can be ordered via the foundation’s website.
Among PTSR activities, special attention should be paid to those that lead to systemic changes in access to treatment and rehabilitation, and promote social awareness related to the disease. Thanks to the efforts of the organization, the time of reimbursed treatment with immunomodulatory preparations has increased from 2 to 3 years, and currently efforts are underway to remove this limitation and to enable children to be treated as well. PTSR also supports rehabilitation centers for people with MS (KOMR in Dąbek near Mława and the MS Rehabilitation Center in Bornem Sulinów). The Society also runs a permanent educational campaign called SyMfonia Hearts. As a result, more and more people know what MS is and how to help people with MS in their daily life.
Kasa na leki..
The most popular among people with MS is the Treatment and Rehabilitation Program, i.e. the possibility of establishing sub-accounts at the Society where individual funds for treatment and rehabilitation are collected, and the purchase of equipment facilitating the daily functioning of people with disabilities. Often, for patients, it is the only way to finance the purchase of expensive, state-of-the-art drugs that slow the progression of disability or independent living equipment.
PTSR enables patients to collect funds for their treatment on sub-accounts also within 1 percent. tax intended for public benefit organizations. It is enough to enter the name of the Polish Multiple Sclerosis Society in the PIT settlement and the KRS number 000000 83356 to make 1 percent. tax went to activities for patients with multiple sclerosis.
Text: Iza Czarnecka