William (pictured) / Gareth Birkett

“I want to be William’s dad,” Gareth Birkett says. “That’s really important to me.”

But caring for his 11-year-old son, born with a rare form of epilepsy and needing care around the clock, often requires Birkett to act as a healthcare professional as much as a parent. There are appointments, prescriptions, admissions into hospital and endless phone calls.

“The administration burden is complex,” he says. “I don’t really want to be a nurse. The whole thing is a shambles.”

Every child with complex needs has unique circumstances, but the difficulty William and Gareth have accessing care will be familiar to many parents.…