Sailing offInterdisciplinary and life-long care for Spina Bifidaand Hydrocephalus or “SHIP”Pierre Mertens, President IFKampala 2 november 2011
IF = International Federation for Spina Bifida and HydrocephalusWorking in 4 domains:- Human Rights (CRPWD)- IF CHILD HELP (Int. Solidarity)- Primary Prevention (Folic acid)- Network development (parent/user groups)
IF CHILD HELP in the International Solidarity Program of IF (IF Child Help working group)Experts from Donors sideIF Child Help Norway or RBF, Norwegian association for SB&HIF Child Help Sweden or RBU, Swedish association for SB&HIF Child Help BelgiumIF Child Help ….(lets hope others will join: Scotland, Ireland, US, Canada..../...)and experts of all levels from North and SouthFor fortification program in Africa Smarter Futures IF/BOSK
IF CHILD HELP working groupSet up an expert meetingto prepare this workshopon interdisciplinary andlife-long care
Interdisciplinary expert groupPrepared a concept note as a result of an expert group- Surgeon- Parent- Paediatrician- Nurse- CBR expert- Adult was missingIt could have been you too!
Draft concept note- Two days to share these ideas with you- to add your comments- to modify the concept note- plan SHIP in your setting- We know that Adult Perspective is missing and that the exercise is mainly focussed on Spina Bifida, for Hydrocephalus it will be a bit different- you should try-out the concept the coming year and come back next year and evaluate and plan the future
Workingtogetheras on aSHIPSpina Bifida & Hydrocephalus Interdisciplinary Program Interaction
Who are the stakeholders in long lifecare /youngster/adultThe childThe parents, family and relativesParent / user groupsThe communityThe surgeon / hospital teamCIC / CBR projectOut- reach clinics …/...TeachersEmployer
Spina Bifida Teams inEurope and Americaare under one roof
SHIP in AfricaDifferent teams and organisationsLong distancesDifferent languagesDifferent bossesEtc..What binds is the well-beingof the child/family/adult
If we do not work together?Splintered ineffective careNo holistic approachHelp will often not be acceptedNeeds will not be servedMetaphor of an ice creamNot too cold/not too hot/ reachable at a payable price(correct balance between cost and benefit) or barriersto care
Negative cycle No believe of the society Unmotivated professionals and parents
Positive cycle Fighting Stereotypes on disabilities Opportunities for people with SB/H
Parent/child/adult involvement“Beginning at the endof the chain” Help is often organized from the professional perspective... But sometimes this help is not really a help for the target group Liesje, Leen and me Two examples Dar es Salaam and Sudan where parent groups took the lead to ensure services
Starting point for this workshop Mbale study Where CBR is following up, the mortality in SB/H children is the same as in the normal population If not the mortality is extremely high!!! CBR and long life follow up is as life saving as surgery !!!
Steps in care- preoperative care (referral, counseling, travel...)- Knowledge and data transfer (Ship Passport)- Surgery and hospitalization- Post operative care- long life care
Surgery is openingthe door to a decentlife!But after that door a full house with many rooms needour attention.Till now we mainlyfocussed on surgery,now we want tolook in all aspectsof long life care
Care starts even beforesurgery- diagnose- will surgery be possible/needed?- referral conditions – Cleaning and protecting the wound – Nutrition status of the kid – The mother and her condition – information to parents – Measure the head circumference (on chart)- information transfer to other professionals
Hospitalization and surgery- networking- min. needed to close the back- min. needed to place a shunt- min. needed for ETV/CPC- indication for surgery- antibioticsPost operative care/counseling and trainingDischarge (ship passport...)
Long life care- CBR project- continence management- parent counseling- training children- schooling- transition- independent living- employment- Relations and family planning
Parent groups- advocacy- informationand sharing expertise- support- political action- feed back on servicesand barriers towards services Why me?- parent meetings- Involvement in out - reach clinics
Adult involvement- In parent group /role models- employed in SHIP program?- education- employment- self care- transition towards adulthood.../...
Contents of the workshopWork in 4 groups,- adults- parent groups- SB nurses- care managers.We will have common sessionsto exchange and learn from each otherand separate sessions to look in specific items.
Statements popping up duringthe meetingAll steps in care should have thesole goal:the improvement of the quality oflife of the personconcerned.The burden of the intervention forthe personshould be lesscompared to the expectedbenefit.