In November, the Senate asked a committee to look into Lyme-like illness in Australia. The committee announced their plan with a list of points they will cover. The committee refer to this as a 'Terms of Reference'. You can find the full terms of reference on the Senate website.
The committee want to:
- find out how many people have a Lyme-like illness and where they live;
- find out how to protect patients, doctors and researchers from poor treatment;
- understand how people get diagnosed with Lyme-like illness. They want to know about pathology laboratories, the types of tests in use and how they work. They want to know how laboratories, and people, can make sure they are doing the right tests the right way. They are interested in overseas tests and if they are different, why? They want to know why tests done overseas are not accepted in Australia;
- find out how much money was spent on research. They want to know what research is looking at the germs and bugs that people get from ticks. They want to know what research is looking at other ways people can become sick with Lyme-like illness;
- find out if there is research looking for a unique Australian bug/s that is causing many people to have a Lyme-like illness;
- find out what types of signs and symptoms people have when they have Lyme-like illness. They want to know how those people are being treated and how patients and families are impacted by their illness; and
- if there is anything else they need to know.
It’s important that everyone who has a Lyme-like illness, and their friends and family make a submission telling the Senate committee about their story. This is your opportunity to stand up and be counted. You don’t need to answer all the points, you can simply tell your own story about how you became sick and how you’ve been treated. You can provide your opinion on any of the other points too. The committee are especially interested in hearing from people with a lived experience of Lyme-like illness.
The committee accepts written submissions. If you are unable to make a written submission, the committee may accept an audio submission which may be transcribed and published with your permission. If you wish to make an audio submission, please contact the Committee secretariat for more information on 02 6277 3515 or firstname.lastname@example.org.
To make a submission, follow these steps:
- Work out which of the points you’d like to talk about. If you’d like to tell your story, we have prepared a template to guide you (PDF or Word);
- If you have a child with Lyme-like illness please also make a submission on their behalf or ask them to help by writing their own submission. We’ve made a submission sheet that you can print for your child to complete themselves;
- If you are writing your submission, the preferred format is Microsoft Word, but you can use other programs. You can also write on paper if you don’t have a computer. If you plan to make an audio submission, record your story. It’s best to use a common audio format;
- You will need to decide if you want to make your submission public, public with name withheld or confidential. Making a submission confidential means that other people won’t be able to see it. Making a submission that is not confidential means that your submission will be published on the www.aph.gov.au website but you can ask for your name to be withheld. Public or public with name withheld are preferred choices, but we understand there are many reasons where full confidentiality may be important;
- All submissions should include your name, email address or other reliable form of contact (such as phone number and postal address). This is to enable the Committee to contact you about your submission. Your personal details are not shared or published, only your name is published if you have elected that option;
- You will get a confirmation email once you've submitted, please read and respond if requested; and
- If you make a submission, the committee may invite you to give evidence at a public hearing. You can accept or decline this invitation.
More information about making a submission is available to download.
After you make a submission you may be invited by the committee to tell your story at a public hearing. Public hearings will be scheduled in the new year. Our aim is to have as many people as possible tell their stories early to make sure that public hearings are conducted in all major cities and are accessible to everyone. The Senate Inquiry remains open for submissions until March 31st, 2016, for those of you unable to support us in submitting early.
Many LDAA members have offered to help people who want to make a submission but need support to do so. If you need support to make a submission, please tell us.
The LDAA will be making a submission on behalf of all patients. Our submission will address all the terms of reference. As well as telling your own story, you can also participate in a consultation group and provide your views on the other points in the terms of reference. Look for the ‘Lyme Senate Sub – consultation group’ on Facebook to join and contribute.
The submission period closes on 31 March, 2016. To keep track of how many submissions have been made and to read those that are not marked confidential, you can access them from the view all submissions page. The committee will report in June 2016.