by Sabine Karner and Zuzana Tomasikova,
A “Survivors group meeting” organized by the Austrian Survivors group and Österreichische Kinder-Krebs-Hilfe (Austrian Childhood Cancer Parents Organisation) took place in Vienna on the 22nd of November 2014.
More than 25 participants from Croatia, Czech Republic, Poland, Romania and Slovakia came to visit Austrian survivor group representatives and some of those even enjoyed pre-Christmas Vienna. The main aims of this exchange meeting were to share the experiences of the Austrian survivors group with the participants, to offer insight into the different Austrian activities and to inspire regional/national future activities of the ‘colleagues’ abroad.
Why setting up a survivors group?
It is not always so obvious that former pediatric childhood cancer patients (and now adults) get active, set up a survivors network/group/organization and offer special activities for survivors or patients within their country. Even the Austrian survivors are quite active, it was wonderful to see that these activities attract also a wide interest from survivors and survivors supporters from different countries. And so, further steps for the long way of strengthening of European collaboration of survivors could be taken.
Survivors groups/networks/organisations can be an essential support for survivors themselves, as well as for current patients and families. Since their aims differ and range from providing social contact, sharing experiences and knowledge up to giving back hope to those, who are still living with cancer, it makes the groups very important.
Sharing experience and give inspiration
Within the first half of the day the Austrian survivors group provided a lot of information about the history, development and the structure of the group, as well as presented the current activities, especially the mentoring project and linked training course. Beside the focus on the national activities it was also very useful for the participants to give information and raise awareness of the International Childhood Cancer Survivors Network (ICCSN), which is an existing network within the CCI/ICCCPO organization.
ICCSN offers already some helpful tools for survivors groups (initiatives), like a handbook “How to establish a survivors group and keep it going” and is responsible for organizing session dedicated for survivors representatives at the international and European CCI/ICCCPO meetings (for more info look at ICCSN). All the presentations were opened for questions anytime during the talks and so a lively discussion started already before lunch break.
The second half of the meeting focused on the needs of the participating countries, where the group could work country-specific. Afterwards their output and challenges were presented in a plenum to support the exchange. Precious input and feedback from the rest of the group was obtained.
The participants from Czech Republic, Poland and Slovakia worked intensively on the topic how to set up a survivor group, since there is no legal/formal existing group YET ( J ) in these countries. Croatian survivors looked into and gathered information about how to set up a mentoring program. For Romanian participants the future needs how to be more active on a health political level and the improvement of the long-term follow-up care for survivors played an important role. The meeting was very productive and exhausting (J ) at the same time, we were not even able to discuss all of the upcoming topics in detail.
We all had the impression of a high interest and need that survivors groups from European countries get connected and share their experiences to strengthen their national activities/aims as well as the European survivors collaboration. The next (short cut) opportunity is the Open Summit organized by the Romanian organization “The Little People”, the weekend before Christmas in Bucharest, where already some participants from this exchange meeting will meet again, but also the next regular opportunity at the 6th CCI/ICCCPO Europe Regional Meeting in Malmö (Sweden) from 8-10 of May 2014.
Looking forward to see you there!