List of Recommendations

Recommendation 1

Recognising the limited number of paediatric rheumatology specialists currently working in Australia, the Committee recommends that the Australian Government urgently establish an eight-year program of secure funding to provide fellowships or training programs with the aim of tripling the number of paediatric rheumatology specialists by 2030.

Recommendation 2

The Committee recommends that the Australian Government fund positions in the largest states of Australia, and in particular New South Wales, so that several accredited sites are available for training and there is less need to obtain training overseas.

Recommendation 3

The Committee recommends that state by state funding is better coordinated for paediatric rheumatologists in the public hospital system and to support the expansion of allied health for paediatric rheumatology including specialist nursing services.

Recommendation 4

The Committee recognises that a multi-disciplinary approach to treatment of childhood rheumatic disease is internationally regarded as best practice and therefore the Committee recommends the establishment of multi-disciplinary centres in major capitals through joint state and federal collaboration.

Recommendation 5

The Committee recommends that the Australian Government directs its funding mainly toward the public system so the centres of excellence can develop training of rheumatologists, ophthalmologists, physiotherapists, occupational therapists, psychologists and registrars in work as a multidisciplinary team.

Recommendation 6

The Committee recommends the Australian Government fund a ‘hub and spoke’ model with outreach clinics in outer metropolitan, rural and regional areas so that equitable care can be provided to all Australian children.

Recommendation 7

The Committee recommends that education in childhood rheumatic diseases of healthcare professionals should be provided as a priority so that diagnosis is not delayed but it is also important that public awareness is increased. Greater education about childhood rheumatic disease for General Practitioners, the wider medical profession, schools and the broader community to encourage early diagnosis and greater support for patients and their families in all aspects of their health journey. Such education programs should be delivered in partnership with experienced patient organisations like the Juvenile Arthritis Foundation Australia.

Recommendation 8

The Committee recommends that state education systems should be provided with support and information about best practice management of children with arthritis to facilitate optimal support services and IT support for children and adolescents living with rheumatic diseases.

Recommendation 9

The Committee recommends increased family support should be provided including National Disability Insurance Scheme and social security for those families who have a child diagnosed with childhood rheumatic disease.

Recommendation 10

The Committee recommends that as a priority state and/or federal funding be provided for:
outreach nurses as they are vital for best management of childhood rheumatic diseases across the country.
dedicated psychology services in all Australian paediatric rheumatology units.
establishing transition centres in public hospitals in all states for transitioning adolescents with arthritis/rheumatic diseases to adult rheumatology services. Further training for adult rheumatologists working in this area is required.

Recommendation 11

Recognising that new medications that are disease altering are increasingly available in other countries, the Committee recommends that the Pharmaceutical Benefits Scheme needs to proactively develop pathways to make sure rheumatic disease treatments become available to paediatric patients in Australia as a matter of priority.

Recommendation 12

The Committee recommends a national registry should be supported with adequate data collection and the ability to participate in clinical trials and research should be supported.

Recommendation 13

The Committee recommends state education departments approve the use of alternatives to handwritten and/or dictation methods for student patients who cannot use these methods, to support them to complete their end of school examinations based on their individual needs.

Recommendation 14

The Committee recommends the Australian Government’s Department of Health in partnership with the Pharmaceutical Benefits Advisory Committee, experts, patient groups and sponsoring companies conduct an urgent review into:
access to treatments for juvenile arthritis including access to drugs not currently available in Australia, and
limitations on access to existing listed medications that prevent patients receiving the most effective medications.

Recommendation 15

The Committee suggests that the successive Standing Committee on Health, Aged Care and Sport (or equivalent) in the 47th Parliament consider completing a full inquiry report into Childhood Rheumatic Diseases.

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