Parliamentary inquiry as a method for advocacy and awareness-raising in childhood rheumatic disease.

Abstract

Aim: To describe the process by which a parliamentary inquiry into childhood rheumatic disease stimulated advocacy and awareness-raising efforts for these conditions. Method(s): In December 2021, the Australian Parliamentary Standing Committee on Health, Aged Care and Sport called an inquiry into childhood rheumatic disease and juvenile arthritis. Submissions were invited around five terms of reference: research; disease impacts; access to care; best practice care and professional awareness / education. Submissions could take any form and were accepted over a two-month period. Result(s): 123 submissions were received; 34 from named individuals, 29 from organisations and 60 anonymously. The vast majority were from patients or their carers. This volume of submissions compares well with previous inquiries into health conditions, including a 2019 inquiry into paediatric and adult allergy (257 submissions), a 2015 inquiry into Hepatitis C (106 submissions) and a 2014 inquiry into skin cancer (63 submissions). Submissions from organisations spanned government and nongovernment sectors, and included patient advocacy organisations, professional groups, hospital departments, research bodies and pharmaceutical companies. Individual submissions came from patients, their families and carers, and current and retired professionals in the field. Broad themes that appeared repeatedly across submissions included mental health challenges; experiences of diagnostic delay and convoluted pathways to care; impacts on family and household members; difficulties with accessing care in rural or remote areas; the desire for care to be repatriated to local services; medication access; and the nature and impact of workforce shortages. In response to these submissions, the Committee will hold public hearings, and table an interim report of recommendations by late March 2022. Conclusion(s): An Australian Parliamentary Inquiry into childhood rheumatic disease attracted widespread interest and a broad range of submissions with considerable overlap in their content. Committee recommendations in response to these submissions are yet to be published.