Study's recommendations for improvements to mito specialist health services

Mitochondrial disease (mito) specialist services play a key role in diagnosing mito and formulating management plans for people impacted by mito. They can be thought of as the ‘hub’ of the health care team for a person with mito, with the ‘spokes’ including the person’s GP, allied health and other health professionals

A team of Macquarie University researchers worked with representatives from nine specialist mito services in Australia. They looked at how each service communicates with mito patients and other health care professionals after diagnosing mito. By combining these results with insights from mito community members, the team have made 17 recommendations for how the management of mito patients can be improved.

Some of the recommendations apply to all people diagnosed with mito – such as providing clear information about the diagnosis to the patient and their GP. Other recommendations are more important to people at risk of an acute episode – such as providing an emergency management plan, contact details for their specialists and adding alerts to their medical records to help ensure they receive the time-critical emergency care they need.

The report identifies that comprehensive specialist care is needed and valued by the mito community. However, the work also uncovered that some services may not have the staff needed to provide this care and that increased clinical capacity may be needed. This echoes the findings of the recently published Rare Metabolic Disease Workforce Whitepaper: ‘Despite the efforts of committed and expert clinicians, hospital staff, patient groups, families, allied health providers and many others, critical shortages in professional expertise and resources are hampering best practice care for patients living with a rare metabolic condition.’

Mito Foundation is using the findings of this report to work with mito specialists and other stakeholders to improve specialist care for the mito community.