Uppsala 2007-08-20
Dear Professor Takeda, dear delegates of the International Forum for the End-of-Life Care for Children with Cancer or Other Disease.
HOPE (Hospital Organisation of Pedagogues in Europe) through its Board wish to send a greeting to the Forum. Hospital teachers from all over Europe would like to invite you to share with us experience of the educational care of the child and adolescent that suffers from illness.
HOPE has country co-ordinators and contact persons in most European countries and other parts of the world. Please visit our home-page www.hospitalteachers.eu. Do not hesitate to write to us for contacts regarding hospital school visits.
The history of HOPE dates back to Ljubljana, Slovenia in 1986. In Barcelona in 2000 during the General Assembly of HOPE members representing most European countries adopted a Charter for the Educational Care of Sick Children and Adolescents in Hospital and Home Tuition. It is our aim to spread the Charter in order to create an awareness of the importance of the need for pupils that are also patients to keep up their schooling.
With regard to your theme allow me to share with you the memory of a young boy who was once my student. In his early teens he fell ill in a cancer which was aggravated by the fact that he also had a Philadelphia chromosome. For many years he fought his cancer bravely. In between treatments he would visit his own school and managed to lead as normal a life as was possible. Finally, advised by his doctors, he had to give up and prepare for his death. During his last week he was surrounded by his school mates and friends till the day came when the nurse who was with the family at home said, you must all leave because your friend now has to say good-bye to his closest relatives.
For the funeral his mother dressed him in the kimono that had been offered to him by the school in Japan he had planned to visit. The young student, who wanted to become an actor, had taken a great interest in the Japanese No-theatre and had also started to learn Japanese. His dream was to travel to Japan to improve his knowledge of the Japanese culture and Japanese. Everybody in the caring team around him supported and kept his dream alive up to the moment when he himself realised he would never be able to go.
During all these years continuity in his education was made possible through close co-operation with his home school, the school in hospital, his parents and the medical team in hospital. Contacts were also taken with a hospital in Tokyo. Even if somewhere we all knew he would probably never be able to make it his last years in life included a future that was linked to Japan.
Thanks to Professor Takeda the Ministry of Education, Sports and Culture has made it possible for the Forum to meet and work. For the next days you will dedicate yourselves to a most difficult task namely that of accompanying a child or a young adult during his or her last days in life.
We look forward to learning more about your work through our colleague Carina Eriksson from Gothenburg, Sweden and hope will like to keep in touch and exchange experience.
Mrs. Gerd Falk-Schalk, President, HOPE