Australian Patient Care Standards
The Australian Patient Care Standards are an important resource to guide health professionals to improve the care they provide for people impacted by mitochondrial disease (mito). The standards have been adapted for Australia based on the standards published by the Mitochondrial Medicine Society. Mito Foundation will work with mito specialists to raise awareness of the standards and use these as the basis to provide the best possible care for the mito community.
How To Use The Patient Care Standards
The Patient Care Standards are designed to be a conversation starter with your health professional(s). Please note, not all recommendations will apply to you - some tests may come with risks or an out of pocket expense so please act on the advice of your health professional(s).
Mito Foundation is working to update its resources to incorporate the Patient Care Standards, this will include useful guides to the standards for mito community members. In the meantime, for assistance with understanding how the standards apply to you, please contact the Mito Foundation Helpline.
Resource For Mito Community - Monitoring Mito
This resource describes key tests that are recommended for people with mito. You can use this information to start a conversation with your health professional(s). You may like to take a copy of this to your general practitioner (GP). Your health professional(s) can work with you to develop a plan to manage your health.
Not all the recommendations will apply to you. Some tests can come with risks and cost you money, so it is important to work with your health professional(s) to avoid tests you don't need.
Future Work With The Patient Care Standards
While the standards were being developed, Mito Foundation worked with Macquarie University to better understand current health care for Australians with mito.
This work is shining a spotlight on several areas for improvement:
- People impacted by mito and their family members spend significant effort negotiating and advocating to get the care they need
- Mito specialist health services vary in their approach to providing information after a diagnosis of mito, including variation in providing emergency plans and management plans
- While having letters and written management plans is important, patients and family members struggle to get other health professionals to read them
- It is particularly challenging to find GPs and allied health professionals who are interested in providing care to people with mito
- People impacted by mito and their family members need more support accessing the NDIS and other sources of non-medical support
These insights were compiled from the following paper, if you wish to learn more: The long and winding road: perspectives of people and parents of children with mitochondrial conditions negotiating management after diagnosis.
The Patient Care Standards is part of Mito Foundation's commitment to improving health systems for the mito community. You can learn more about the work on our Driving Change webpage.