11 March 2020
CreakyJoints launches first patient guidelines for Oz
The first ever patient-centred guidelines for Australians with rheumatoid arthritis have been launched by CreakyJoints.
The guidelines, titled Raising the Voice of Patients: A Patient’s Guide to Living with Rheumatoid Arthritis in Australia, are available to download for free on the CreakyJoints website.
It is the first of in a planned series for patients with a range of arthritic conditions.
“CreakyJoints US have been putting out patient guidelines for a number years,” said Naomi Creek, the national coordinator for CreakyJoints Australia.
“And they’ve been very successful over there. So, we’ve taken what they’ve done, and we’ve made it suitable for Australia.”
The guidelines are a “go-to resource that has everything a patient should need at any stage of their journey”, including information about diagnosis, medications, blood tests, allied healthcare, and tips for living well with RA, said Ms Creek.
“The title of the guidelines is ‘Raising the voice of patients’, so it’s trying to give patients the information they need and feeling like they are empowered to talk with health professionals and manage their conditions themselves in a better way,” she said.
“So, that’s probably what may be a little bit different to some other resources that are out there.”
“When you get diagnosed with a chronic disease, your whole reality changes,” said Kasey Gardiner, co-author of these patient guidelines and a Queensland representative of the CreakyJoints Australia patient council.
“You’re trying to balance doctors’ appointments, new medications, and a range of emotions as you come to terms with your new ‘normal’ and what that could mean,” she said.
“Inevitably that search leads you online to learn how other people cope and to gain a better understanding of what you are going through and what lies ahead. These guidelines provide a positive and comprehensive alternative to the misinformation people inevitably encounter online.”
The guidelines were reviewed by two rheumatologists, Dr Irwin Lim, the director of BJC Health in Sydney and the editor of Rheumatology Republic, and Associate Professor Stephen Hall, the medical director of Emeritus Research.
“It’s great to see patient guidelines created with loads of input by actual people who have had to live with the disease,” said Dr Lim.
“These patients are well-read, experienced, with balanced, considered views, and they’ve produced what looks to be a very useful tool for those grappling to understand RA and the various strategies to manage this disease.”