Each year, approximately 2,000 Australian babies, children and adults are diagnosed with more than 100 different types of brain cancer. 

Brain cancer presents unique and complex challenges with patients and carers struggling to coordinate care across specialties and between active surveillance (“wait and see”) periods. Brain tumours are disabling and only worsen with time, as patients require additional support services and therapies. Family and carers who support people with brain cancer bear a heavy burden, and must navigate a constantly changing set of symptoms, needs and behavioural changes, including aggression, irritability, anxiety and depression. 

There is an urgent need for brain cancer care coordinators (BCCCs) throughout Australia, who improve outcomes for patients, carers and families, and the health system. However, there are few BCCCs available nationwide, with over 90% of the few in major cities on the east coast. 

A roundtable was convened by the Australian Brain Tumour Collaborative in November 2024, to discuss the gaps in cancer care navigation faced by patients, families and carers in Australia, and how BCCCs can fill these gaps. Together, roundtable attendees identified five key steps for policymakers to improve outcomes for the brain cancer community.