Virtual Delegation Visit to Austria – 26 November 2020
A virtual TIF Delegation visit with stakeholders from Austria took place on 26 November 2020. The Delegation Team consisted of Dr Michael Angastiniotis (TIF Medical Advisor) and Mr Rawad Merhi (TIF Countries Officer). The Delegation was accompanied by Dr Eva-Maria Knoll (a Medical Anthropologist & passionate volunteer working with TIF in Austria).
The Delegation Team during the virtual meeting had the opportunity to meet with 53 patients, parents and treating physicians from Austria. The agenda of the meeting focused on social and psychological challenges experienced by patients in their daily life. Experts in the field Dr Roswitha Dickerhoff (Munich), Dr Annette Hoferer (Stuttgart) and Dr Jens Straeudle (Stuttgart) engaged in the discussion also.
During the meeting, the TIF Delegation Team had the opportunity to talk about the challenges that patients face in their everyday lives (including social, occupational and education development) and their quality of life, and discuss with patients and treating physicians collaborative ways forward.
Main Findings:
- There are prominent language barriers, making communication between doctors and patients rather intricate.
- Patients stated to often feel isolated and marginalized, due to the lack of patient support groups. Hence, the successful establishment of the Thalassaemia & Sickle Cell Forum (THALSIFO) Austria, as a result of the delegation visits in 2018 and 2019 is a huge milestone.
- There is a necessity to strengthen the psychosocial support provided to patients.
