Perth Mother Voices Concerns Over Son's Complex Epilepsy Care

A Perth mother, Sarah Tangney, has voiced concerns regarding the health system's ability to provide consistent specialist care for her three-year-old son, Teddy, who has a complex form of epilepsy. She believes her son is being inadequately managed by being moved between two public hospitals.

Teddy was diagnosed six months ago with drug-resistant generalised myoclonic epilepsy syndrome, which causes sleep-activated seizures. Ms. Tangney reports that Teddy has experienced nightly seizures since September, some lasting up to 20 minutes. His seizures include myoclonic, vocal, and tonic-clonic types, with the latter consistently occurring between 1:00 AM and 4:00 AM. These episodes often require rescue medication and an ambulance.

Hospital Referrals and Care Concerns

Teddy was initially taken to Rockingham Hospital, then referred to the emergency department at Perth Children's Hospital (PCH). Ms. Tangney states that Rockingham Hospital indicated Teddy's case was too complex for their facility, directing them to PCH.

She alleges that PCH primarily offers care through its emergency department rather than providing continuous outpatient specialist care.

The family advocates for Teddy to receive regular outpatient care under a specialist at PCH, arguing that the emergency department is not suitable for ongoing management of a complex chronic condition with uncontrolled seizures.

Official Responses

A spokesperson for WA's Child and Adolescent Health Service acknowledged the family's frustration and confirmed that Teddy's clinical treatment is ongoing, with continued communication with the family to achieve the best outcome. The service noted a preference for high-quality care closer to home when possible, but recognized that some specialized tests or treatments might necessitate admission to PCH.

WA Health Minister Meredith Hammat stated that PCH would continue to treat Teddy but did not specify if he would be under the care of a specialist, citing patient confidentiality. She assured that clinicians treat each child based on their specific needs.

Advocacy for Consistent Care

Ms. Tangney believes that consistent specialist care is essential for trialing appropriate medication and ensuring continuity of treatment. She reported difficulties finding a private sector specialist, with referrals consistently directing her back to PCH.

Shadow Health spokesperson Libby Mettam commented that PCH should have an ongoing care plan for Teddy, criticizing the necessity for the family to repeatedly explain his condition in the emergency department. A Senate committee inquiry into epilepsy is currently examining barriers to appropriate treatment and the availability of medical practitioners, including neurologists.