Naomi Creek, our National Coordinator was diagnosed with Juvenile Rheumatoid Arthritis when she was 12 years old, pictured here with her parents in 1982.
The House of Representatives Standing Committee on Health, Aged Care and Sport is seeking public input to inform the Parliamentary Inquiry into Childhood Rheumatic Diseases (including juvenile arthritis).
The main purpose of a parliamentary committee is to inquire into a topic relevant to its area of interest. Such inquiries usually result in a report to the Parliament. Most inquiries have terms of reference, which set out the matters to be considered by the committee.
As part of an inquiry, a committee seeks the views of those who may have an interest in the topic of the inquiry. A committee may do this in a number of ways such as through written submissions, online surveys and questionnaires, and subsequently through public hearings, including in the form of roundtables, workshops and community statement sessions. Most commonly, a committee asks for written submissions addressing an inquiry terms of reference and then proceeds to public hearings.
For this inquiry, the Committee will examine research into the causes of childhood rheumatic diseases and will focus on the health, social, educational and economic health impacts on children and adults who develop these diseases.
What Are the Terms of Reference for This Inquiry?
The Committee will look at access to medical services, including diagnosis, treatment and ongoing management and support for all patients. The inquiry will focus on Best Practice quality of care and availability of treatments as well as assessing the professional education and training that is currently available for patients.
The terms of reference will be:
- Research into the causes of childhood rheumatic diseases, including prevalence levels of childhood rheumatic diseases in Australia.
- The health, social, educational and economic health impacts on children and adults who developed rheumatic diseases in childhood, their families and the broader community.
- Access to medical services, including diagnosis, treatment and ongoing management and support including patient information, with a focus on rural and remote communities.
- Best practice quality of care and availability of treatments, including emerging treatments with a focus on equitable access to effective drugs.
- The adequacy and consistency of professional education, training and awareness amongst healthcare professionals and community awareness of the disease.
What We’d Like You to Do
The Committee is looking forward to hearing from the public, health professionals, patients and all interested stakeholders on how Australia’s health system could improve the management of childhood rheumatic diseases for all patients and their families.
CreakyJoints Australia, together with Global Healthy Living Foundation Australia (GHLF Australia) will be submitting our feedback for the inquiry and we’d like to include your comments. Read on for further information then email your comments to us no later than 12 pm on Thursday 3 February 2022.
- Read through the Terms of Reference and decide if you want to comment on ways some or all of these can be addressed to improve the experience of people with childhood rheumatic diseases and those who care for them.
- Type your comments and send them to us. You can do this by:-
– typing your comments into a Word document and attaching that to your email OR
– typing your comments directly into your email. - Ensure you have clearly noted which term(s) you are commenting on. Your comments can be as simple as a few bullet points or as long as two or three paragraphs.
How to Submit Your Feedback to Us
Please email your comments to Rosemary Ainley at rainley@creakyjoints.org.au no later than 12 pm on Thursday 3 February 2022.
We will collate your replies into a single submission and send it to the House of Representatives Standing Committee on Health, Aged Care and Sport on your behalf.
If you wish to make your own submission directly to the Committee you can do so. You will find instructions for this on the Inquiry home page.
Kind regards,
The CreakyJoints Australia and GHLF Australia team
