Article

PURPOSE: To describe, within a state-wide transition framework, the pathway to
improved health support services for adults with spina bifida. Our aim was to
achieve adult care that addressed adult health issues, despite significant
budgetary restraints and competition for the public health dollar. METHOD: A
pilot clinical service project in one of the Area Health Services and a
transition workforce study were carried out in the state of NSW in Australia. The
advocacy skills of clinicians were harnessed.
RESULTS: A regional adult spina
bifida clinic was successfully created and patient resources were developed.
Ongoing funding was not granted. A transition workforce study identified the poor
clinic attendance of adult spina bifida patients and the high costs of hospital
admissions for spina bifida related complications. Through advocacy and data
provision, health funding was provided for two health support workers for a new
service, the Spina Bifida Adult Resource Team.
CONCLUSIONS: An effective
transition to adult care is essential for chronic childhood illness, but young
people with chronic illness often have no significant voice. Advocacy for public
health spending requires compelling evidence which we were able to provide and
which could be a model for other service providers.

Langue : ANGLAIS