Submission to the Senate Community Affairs References Committee

Palliative care has under-appreciated relevance for people with complex and treatment-resistant epilepsy. This includes children and young people impacted by developmental and epileptic encephalopathies (DEE) and their families; and people who experience seizures in the context of advanced life-limiting illness.

PCA recommends:

• Better integration between neurology and palliative care services.
• Clearer pathways for timely referral to palliative care for people with severe and complex epilepsy.
• Workforce training and development in seizure recognition, emergency seizure management and end-of-life care.
• Enhanced support for family carers, and wider provision of grief and bereavement services.

Download submission