Two Worlds - One Family: a round-table organised by ICCCPO and SIOP (Oslo 2004) |
At the recent SIOP/ICCCPO-meeting, a round table forum was organized to develop guidelines for Twinning Projects. It was stated that twinning is an important subject affecting more than 200,000 children with less than best treatment. The discussion concluded with a number of statements, which will be integrated into the guidelines.
|
Essential elements for twinning: |
|
| - a skilled, full-time program leader | |
| - a community support group | |
| - long-term institutional commitment | |
| - a multidisciplinary approach | |
|
Links are created on the base of: |
|
| - long-term relationships between people of different countries | |
| - support from parents groups | |
| - cancer funds | |
| - palliative care projects | |
|
Assessment of needs: |
|
| - create templates for assessments of units, institutions | |
| - request visits in advance and declare purpose of visit | |
|
Priorities: |
|
| - start with frequent tumors easy to treat | |
| - do feasability studies: use adapted protocols | |
| - train personnel to attain high standards of care from onset | |
| - organise independent supervision | |
|
Affordable treatment |
|
| - contact IDA, P.O.Box 37098, 1030 AB Amsterdam, the Netherlands (info@ida.nl;www.ida.nl) for certified drugs and utensils | |
| - supervise transport through customs (loss, delays), collection (theft) and distribution to parents (without charge) | |
|
Training priorities |
|
| - train always 2 per area and use them as future local trainers | |
| - do not allow rotation (e.g .of nurses) as skills are lost | |
| - provide periodic up-date training | |
|
Role of parents: |
|
| - mobilise resources | |
| - provide advocacy and local empowerment | |
| - support survivors and their families | |
|
Awareness at the primary care level: |
|
| - tell professionals, parents, media and TV that childhood cancer is curable | |
| - promote St. Siluan's early warning signs | |
| - organise triage and palliative care in the periphery | |
Contributors
to this discussion:
B.
Agarwal, F. Alaoui, R. Barr, T. Eden, G. Henze, P. Hesseling, J. Lemerle, G.
Masera, M. Naafs-Wistra, Y. Ravindranath, R. Ribeiro, G. Thaxter, A. Veerman
Responsible
Coordinators: for ICCCPO: Geoff Thaxter (Vice-Chairman); for SIOP: Hans-Peter
Wagner (Chairman, PODC Committee)