Ka pravednom pristupu zdravstvenoj i socijalnoj zaštiti osoba sa retkim bolestima u Republici Srbiji - perspektive decentralizacije usluga
Towards Fair Access to the Health and Social Protection of People With Rare Diseases in the Republic of Serbia - Perspectives on the Decentralisation of Services

Summary/Abstract: Starting from the fundamental principle that the attitude towards vulnerable groups and minorities is a measure of the openness of a society and its readiness to facilitate the unhindered realisation of the rights of each individual member, this paper examines the availability of health and social care services to people suffering from rare diseases and their family members. In most of the Republic of Serbia, there are no adequate resources for meeting their needs and realising their various rights, especially those related to access to health and social care services, as indicated by the results of the qualitative research conducted. This significantly affects the deterioration of the social position of both patients and their family members, who take on the greatest burden of caring for the sick. The research that we present in this paper aims, through a combination of theoretical conceptualisation, field research, and public initiatives, to discover, interpret, and propose ways in which the existing framework in the field of health and social care – which is nominally improved – can be improved. Qualitative empirical research was conducted to define patterns of access or lack of access to services as well as to formulate proposals for the improvement of public policies that will be sent to decision-makers and institutions that are relevant in this area. The search for ways to decentralise the service system, while maintaining the necessary level of expertise in the highly specialised health centres that these diseases require, is still ongoing, and the results of this research offer certain insights for more precise adjustments of public policy measures in this area

• Details
• Contents