LvWSthlm1 Svensk Neuropediatrisk Förening Vidareutbildningsdagar 13-14, 2005 VÅRDPROGRAM EN RÄDDARE I NÖDEN eller SLUTET PÅ INDIVIDUELL KLINISK BEDÖMNING Lennart von Wendt Prof Barnneurologi, H:fors Prof Neuropediatrisk rehabiliteriung, ALB/KI, Sthlm

LvWSthlm2 Skräckexempel på hur barn med neuropsykiatriska svårigheter remitteras härs- och tvärs i Helsingfors mellan primärvård och specialsjukvården

LvWSthlm3 Assessment of national clinical practice in the treatment and rehabilitation of children with cerebral palsy H. Anttila, I. Autti-Rämö, J. Suoranta, A. Malmivaara, M. Mäkelä FinOHTA, The National Research and Development Centre for Welfare and Health (STAKES), Helsinki, Finland

LvWSthlm4 Objectives 1) To survey the availability and use of different therapies and drugs on children with CP. 2) To identify what therapies and treatments will be chosen for three varying severity of diplegic CP.

LvWSthlm5 Methods Structured questionnaires and video recordings of three example cases with short written summary. Data collection in November-December 2003 of child neurological rehabilitation teams that cover medical rehabilitation in Finland: 5 university hospitals, 15 central district hospitals, nongovernmental organisation and 3 schools for handicapped children. The teams were asked to produce consensus answers.

LvWSthlm6 Child 1 (age: 2 years 9 months, ambulant, no additional problems): o Amount of therapy* ranges from 60 to 112,5 hours per year. o Botulinum toxin was recommended in 10/21, electrical stimulation in 9/21 and surgical intervention in 3/21 hospitals. Child 2 (age: 4 years 2 months, walks indoors with an aid, additional visuomotor disorder indicating specific learning disorder): o Amount of therapy* ranges from 100 to 200 hours per year. o Botulinum toxin was recommended 12/21, electrical stimulation in 4/21 and surgical intervention in 7/21 hospitals. RESULTS

LvWSthlm7 Child 3 (age: 3 years 5 months, non-ambulant, visuomotor, additional perceptual and oral motor control problems): o Amount of therapy* ranges from 116 to 225 hours per year. o Botulinum toxin was chosen in 16/21, electrical stimulation in 6/21 and surgical intervention in 4/21 hospitals. RESULTS

LvWSthlm8 KONKLUSION Så här kan det inte få se ut ! Vetenskap och beprövad erfarenhet ? eller fritt fram för tyckeri och charlataner? Tyvärr knappast ett isolerat finskt fenomen

LvWSthlm9 Ett annat skräckexempel: H:fors - utarbetande (jobbigt) av vårdprogram + vårdkedjor för en rad olika tillstånd - särskild blankett ifylls dels av primärvården dels av specialsjukvården, undertecknas ( kontrakt!) - slutresultat: ytterligare ett papper i journalen som ingen bryr sig om