Title page
Contents
Chair's Foreword 3
Terms of Reference 9
Members 10
List of Recommendations 12
1. Interim Report 16
Conduct of the inquiry 16
Timeframe and interim report 16
Overview of childhood rheumatic diseases 17
Prevalence and causes 17
Department of Health initiatives 19
Experiences of patients and families 20
Initial findings 24
Workforce 24
Paediatric Rheumatologists 24
Nurses and Allied Health Professionals 27
Eye Health 28
Regional and rural patients 29
Outreach clinics 29
Existing clinics and services 31
The experience of regional and rural patients 33
Education and awareness 34
General practitioners, paediatricians and the wider medical profession 35
Schools and the broader school community 38
Access to medication and treatments 40
Pharmacological therapy 41
Non-Pharmacological treatments 42
Physiotherapy/occupational therapy 42
Psychosocial services 42
Managing complications 43
Pharmaceutical Benefits Scheme medications 43
Access difficulties 43
Low cost medications commonly used in paediatric rheumatic disease 44
Biologics - High cost medications used increasingly in paediatric rheumatic disease 44
Inefficiencies prescribing biologics 45
Emerging treatments 47
Economic costs 48
National Disability Insurance Scheme 49
Medicare 51
Transition services from paediatric rheumatology to adult rheumatology 51
Access to treatments post 18 years of age 53
Data collection 54
Appendix A. Submissions 59
Appendix B. Exhibits 64
Appendix C. Hearings and Witnesses 65
Table 1.1. Australia's paediatric rheumatologist workforce equivalent fulltime (EFT) 25
Figure 1.1. The hub and spoke model in New South Wales 31