1. 'Sailing off'
Interdisciplinary and life-long
care for Spina Bifida
and Hydrocephalus or “SHIP”
Pierre Mertens, President IF
Kampala 2 november 2011

2. 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)

3. 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

4. IF CHILD HELP working group
Set up an expert meeting
to prepare this workshop
on interdisciplinary and
life-long care

5. 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!

6. 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

7. Working
together
as on a
SHIP
Spina Bifida & Hydrocephalus Interdisciplinary Program
Interaction

8. Who are the stake
holders in long life
care /youngster/adult
The child
The parents, family and relatives
Parent / user groups
The community
The surgeon / hospital team
CIC / CBR project
Out- reach clinics …/...
Teachers
Employer

9. Spina Bifida Teams in
Europe and America
are under one roof

10. 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

11. 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

12. Negative cycle
No believe of the society
Unmotivated professionals and parents

13. Situation in … Africa

14. Positive cycle
Fighting Stereotypes on disabilities
Opportunities for people with SB/H

15. 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 Liesje, Leen and me
Two examples Dar es Salaam and Sudan where
parent groups took the lead to ensure services

16. 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 !!!

17. Steps in care
- preoperative care (referral, counseling, travel...)
- Knowledge and data transfer (Ship Passport)
- Surgery and hospitalization
- Post operative care
- long life care

18. 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

19. 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

20. 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...)

21. Long life care
- CBR project
- continence management
- parent counseling
- training children
- schooling
- transition
- independent living
- employment
- Relations and family planning

22. Parent groups
- advocacy
- information
and sharing expertise
- support
- political action
- feed back on services
and barriers towards services Why me?
- parent meetings
- Involvement in out - reach clinics

23. Adult involvement
- In parent group /role models
- employed in SHIP program?
- education
- employment
- self care
- transition towards adulthood
.../...

24. 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.

25. 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.

26. www.ifglobal.org