what is a_ship
TRANSCRIPT
'Sailing off'
Interdisciplinary and life-long care for Spina Bifida and Hydrocephalus or “SHIP” Pierre Mertens, President IF Kampala 2 november 2011
IF = International Federation for Spina Bifida and Hydrocephalus
Working 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 side IF Child Help Norway or RBF, Norwegian association for SB&H IF Child Help Sweden or RBU, Swedish association for SB&H IF Child Help Belgium IF Child Help ….(let's hope others will join: Scotland, Ireland, US, Canada..../...) and experts of all levels from North and South For fortification program in Africa 'Smarter Futures' IF/BOSK
IF CHILD HELP working group
Set up an expert meeting
to prepare this workshop
on interdisciplinary and
life-long care
Interdisciplinary expert group
Prepared a concept note as a result of an expert group
- Surgeon
- Parent
- Paediatrician
- Nurse
- CBR expert
- Adult was missing
It 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
Working
together
as on a
SHIP
Spina Bifida & Hydrocephalus Interdisciplinary Program
Interaction
Who are the stake
holders in long life
care The child /youngster/adult
The parents, family and relatives
Parent / user groups
The community
The surgeon / hospital team
CIC / CBR project
Out- reach clinics …/...
Teachers
Employer
Spina Bifida Teams in
Europe and America
are under one roof
SHIP in Africa
Different teams and organisations
Long distances
Different languages
Different bosses
Etc..
What binds is the well-being
of the child/family/adult
If we do not work
together?
Splintered ineffective care No holistic approach Help will often not be accepted Needs will not be served Metaphor of an ice cream Not too cold/not too hot/ reachable at a payable price (correct balance between cost and benefit) or barriers to care
Negative cycle
No believe of the society Unmotivated professionals and parents
Situation in … Africa
Positive cycle
Fighting Stereotypes on disabilities Opportunities for people with SB/H
Parent/child/adult involvement
“Beginning at the end
of the chain”
Help is often organized from
the professional perspective...
But sometimes this help is not
really a help for the target
group
Two examples Dar es Salaam and Sudan where
parent groups took the lead to ensure services
Liesje, Leen and me
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 !!!
Starting point for this workshop
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 opening
the door to a decent
life!
But after that door a full house with many rooms need
our attention.
Till now we mainly
focussed on surgery,
now we want to
look in all aspects
of long life care
Care starts even before surgery
- 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
- antibiotics
Post operative care/counseling and training
Discharge (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
- information
and sharing expertise
- support
- political action
- feed back on services
and barriers towards services
- parent meetings
- Involvement in out - reach clinics
Why me?
Adult involvement
- In parent group /role models
- employed in SHIP program?
- education
- employment
- self care
- transition towards adulthood
.../...
Contents of the workshop
Work in 4 groups,
- adults
- parent groups
- SB nurses
- care managers.
We will have common sessions
to exchange and learn from each other
and separate sessions to look in specific items.
Statements popping up during
the meeting
All steps in care should have the sole goal: the improvement of the quality of life of the person concerned. The burden of the intervention for the person should be less compared to the expected benefit.
www.ifglobal.org