2017 has finished and we take stock of the "I have PID. I'm not alone" project

February 2018

The 2017 has finished and from the project "I'm not alone" we have evaluated all the work that we have developed. The aim has been to ensure the emotional well-being and quality of life of children with PID. Throughout the year we have been able to attend 54 patients and more than 120 relatives, we have accompanied them in their process responding to very diverse and complex needs, making a total of 575 visits. There have been interventions in small therapeutic groups, 4 group workshops,social activities and a day trip. Within the "PID in schools" program, we have done interventions in 4 educational centers.

An important novelty has been that in 2017 the newborn screening of the Severe Combined Immunodeficiency has begun through the test of the heel of all the newborns in Catalonia. We have taken care of 12 families within this pioneering protocol in our territory, offering psychological support from the first moment.

The project has worked on an integrated support model and coordinated with the interdisciplinary team and with the two entities involved; the Catalan Association of Primary Immune Defects (ACADIP) and the BCN PID Foundation, which has allowed us to offer social grants during hospital admission, optimize the space for psicological consultations and to have games and stimulation material. All of this has been possible mainly thanks to the collaboration of Obra Social La Caixa, as well as the support received by various administrations: the Catalan Government, the City Council and Diputació de Barcelona.

The overall assessment has been very satisfactory from all the participants. We have been able to observe how attending to the psychological and personal dimension of the patients and their families has favored the acceptance of the diagnosis, has optimized the adherence to the treatments and, therefore, has improved the life of the children with PID and of its surroundings.