Talk 15: Emerging Responses by the Association for Spina Bifida and Hydrocephalus in Romania

Adriana Tontsch

Association for Spina Bifida and Hydrocephalus in Romania

Background: A large number of people with Spina Bifida and Hydrocephalus (SBH) and parents complained about two important issues - the health care system and sociocultural factors. It is known that the health care system in Romania is considered as one of the worst in Europe. In addition, scarce resources, inadequate infrastructure, poverty, lack of necessary equipment, inadequate medical facilities, and insufficient supplies have resulted in failing medical care. The Association for Spina Bifida and Hydrocephalus in Romania should mention that Romania has one of the highest levels of poverty, social exclusion, and limited access to education in the EU. . Methods: The Association for Spina Bifida and Hydrocephalus in Romania developed new strategies and with specific priorities for the association to respond to Covid situations. In order to support its members and to reduce the burden of the pandemic, the association developed a plan which includes information about Coronavirus and the Vaccine, medical information and advice provided by medical staff, we organized different campaigns and Zoom conferences. Moreover, the association created an action plan with specific priorities to meet the needs of the refugees from Ukraine in Romania and Moldova. The impact of the crisis in Ukraine shows how it is affecting people with SBH in Romania. Higher food and energy prices and budget cuts in the healthcare system will impact the quality of life of persons with SBH and their families.

Results: The association has been working together with persons with SBH, parents and families to identify where the association can play a useful role and what are the matters they want/need to talk about or how the association can better communicate with them. This experience gave the association the opportunity to understand their changing needs during the pandemic. Members have said how important they find the possibility to come together and to share their fears, worries, anger and most important their needs. This fact played a crucial role to achieve greater team spirit and confidence in members. The association has good cooperation with the Association for SBH in Germany (ASBH) and received support, information and advice during the pandemic and the crisis in Ukraine from ASBH.

Conclusion: Reflecting on the past helps the association see the mistakes in the past and to learn to avoid repeating them in the future. Ignoring fears, anger and needs of the citizens is not a solution. When WHO declared the pandemic in March 2020 the association was not well prepared to understand the meaning of the Coronavirus and its consequences. A long time was taken to respond to the challenges and to deal with the crisis. The Covid-19 pandemic coupled with the war in Ukraine caused not only an economic crisis but also a humanitarian crisis with devastating consequences on persons with SB/H. According to many research and observers, the short and long term effects of Covid-19 pandemic and the war in Ukraine might have big impact on mental and physical health such as depression, anxiety, withdrawal from social life etc. This is an opportunity to rethink the future.