Report of the ICCCPO meeting at SIOP 1998, October 4-7, Yokohama, Japan

Marianne Naafs-Wilstra

 

At this meeting were present on behalf of ICCCPO: Barbro Eriksson, Sadie Cutland, Christine Wandzura, Kurt Hansen, Marianne Naafs-Wilstra. They had the assistance of: Annette Blomberg (Denmark), Hillary Cutland (South Africa), John Spinetta (USA), Patricia Deasy-Spinetta (USA). 

During this whole meeting we were most generously hosted by CCAJ, the Japanese parent organisation, and Mr. Keiji Iwata, chairman of CCAJ. 


On Sunday, October 4 we started with two Panel Discussions: one on Long Term Survivors and one on Bereaved Families. During the whole day the room was filled with over 300 participants, and many professionals took the opportunity to attend. For the Japanese people simultaneous translation was available. 

On Monday, October 5 we went by bus to Tokyo to visit St. Luke's Hospital where Dr. Hosoya showed us around. In the afternoon we had a session on School Issues. It was attended by about 175 people.  

On Monday evening was the official opening ceremony of the SIOP meeting where I was invited to speak on behalf of the ICCCPO (this speech is printed elsewhere in this newsletter). I also had the honour to be received in audience by the Crown Prince and Princess of Japan, who were highly interested in the ICCCPO's work as well as in the work of CCAJ.

On Tuesday morning, October 6 we organised the ICCCPO Workshop for 65 people. After an introduction we split up into five groups: 1) education of parents 2) local programs, 3) informed consent/psychosocial support, 4) working with the medical staff, and 5) fundraising. 

Tuesday afternoon was the presentation and workshop on camps where 50 people were present.

On Wednesday, October 7 we attended the SIOP psychosocial workshop. The guidelines for the support of siblings were discussed. After coffee break we split up into two groups and discussed burnt out. 

We attended some of the nurses' sessions and PODC sessions (Paediatric Oncology in Developing Countries) and took the chance to network with doctors and nurses from all over the world and to meet with the SIOP board. We had the opportunity to discuss the coming SIOP meeting in Montreal in September 1999, where ICCCPO will organise a parent meeting and its Annual General Assembly Meeting. We also discussed future plans and how to develop a more intensive co-operation between SIOP and ICCCPO. To work further on these plans I have been invited to the SIOP board meeting in January in Amsterdam and we invited Alan Craft, secretary of SIOP, to come to the ICCCPO Executive Committee meeting in London in February.