The changes coming to NSW hospitals after Joe’s death at Northern Beaches

A rapid response program enabling families to speak up about a loved one’s treatment will be bolstered and renamed “Joe’s rule” after an investigation into the tragic death of a two-year-old boy at a Sydney hospital.

Elouise and Danny Massa met Premier Chris Minns on Wednesday after speaking out last week about the death of their son Joe at Northern Beaches Hospital in September.

In what they described as an emotional meeting, the family said Minns, Health Minister Ryan Park and NSW Health secretary Susan Pearce had pledged to develop a “more robust” system for parents and patients to know their rights.

“It [was] the most constructive, positive meeting that I think any parents who are broken-hearted could expect to have with the premier of NSW,” Elouise Massa said. “They were moved to tears, we were moved to tears … we felt that this journey, which has only been a week long for us in terms of being in the media, has been worth it, worth every single moment of heartache.”

An internal investigation into Joe’s death found serious individual and systemic failures in the hospital’s management of his rapidly deteriorating condition. The review said his deterioration may have been recognised earlier if his parents’ and clinicians’ concerns had been escalated sooner.

Joe’s father Danny said they wanted to make it easier for parents to escalate concerns and the current REACH protocol – which stands for “Recognise, Engage, Act, Call, Help is on its way” – was too complex and not well-known.

“There’s an intention to simplify reach from a five-word acronym into something that’s easily digestible for a parent or carer who’s in the emergency department and is stressed, and they’re able to easily enact their rights at that point in time,” he said.

The Massas said Pearce would organise a round table to investigate upgrading and potentially mandating the REACH protocols, which would be re-launched as “Joe’s rule”.