Conference

The work­shop builds on the previ­ous day’s presen­ta­tion and focuses on the future: What needs will people with Thalido­mide damage have as they age? And how would they like to be supported and assisted? Marie Kehoe‑O’Sullivan invites partic­i­pants to share their expe­ri­ences, wishes, and perspec­tives and to collec­tively reflect on future support and care. 

In Ireland, a concept was devel­oped together with Thalidomide-affected indi­vid­u­als to facil­i­tate access to medical care and social support services. This resulted in the National Thalido­mide Advo­cacy Office, a national advi­sory and advo­cacy body that assists those affected in orga­niz­ing and provid­ing the indi­vid­u­ally required support. 

In the work­shop, Marie Kehoe‑O’Sullivan presents the work of this insti­tu­tion. She explains which support services are offered and how those affected can access them. The focus is on the co-design approach: support services are devel­oped not just for, but together with, those affected. After all, they are the experts on their own bodies, their life situ­a­tions, and their needs. 

Using prac­ti­cal exam­ples, the speaker demon­strates the impor­tance of regu­lar indi­vid­ual needs assess­ments, simple and trans­par­ent processes, and contin­u­ous review of the services offered. It also addresses how success­ful, trust-based coop­er­a­tion between those affected and profes­sion­als can be achieved. 

The work­shop provides insights into the Irish support model and shows how needs-based care can contribute to improv­ing qual­ity of life. There will be an oppor­tu­nity for ques­tions and exchange afterwards.