Development of health support services for adults with spina bifida

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.

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.

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.

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.