'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