Joe and Kyran’s rule: concerns over ‘unknown’ hospital parent helpline

A little-known hospital program to help parents escalate concerns over a child’s treatment that was renamed following the death of a Sydney toddler has prompted concerns it was ineffective for a decade.

A hospital program to help parents escalate concerns over a child’s treatment that was renamed “Joe’s Rule” by the Minns government this week following two-year-old Joe Massa’s death, had already been in place for a decade after the death of another child, prompting concerns over why the program was ineffective.

The REACH (Recognise, Engage, Act Call, Help) program was created in 2013 after the death of six-month-old Kyran Day who had been misdiagnosed at Shoalhaven hospital on the NSW south coast. The REACH program was unofficially named “Kyran’s Rule” after the advocacy of Kyran’s parents, Naomi and Grant Day.

Naomi Day and Grant Day, parents of six-month-old Kyran Day who died in October 2013 after allegedly being misdiagnosed at Shoalhaven Hospital. Picture: John Fotiadis

Under the program, parents can request a clinical review if they feel something is not right with the treatment of their loved one, which should occur within 30 minutes. If they are still concerned they can ask for a rapid “independent review”.

Six-month-old Kyran Day died in 2013 after being misdiagnosed at Shoalhaven Hospital.

Yet since the program’s inception it has only been available in public hospitals but not all private practices with very few available metrics to measure the program’s efficacy.

After Joe Massa’s parents Elouise and Danny met with Premier Chris Minns on Wednesday, the government committed to holding a roundtable on strengthening REACH, saying they would name the program’s expansion “Joe’s Rule”, with the original protocol to remain “Kyran’s Rule”.

Elouise and Danny Massa, parents of the boy who died after negligence at Northern Beaches hospital. Picture: NewsWire / Monique Harmer

Ms Massa said since the program’s inception, the REACH program had “fallen by the wayside because no one knows about it”.

“Staff don’t know it’s available, my GP didn’t even know it was available and parents don’t know it’s available,” she said.

“A decade on, it needs to be looked at and have the spotlight shone on it again.

“This can save lives – I genuinely believe Joe would be here if I knew about it.”

Ms Massa said she would love to meet Kyran’s family and work with them on how the program could be further improved.

Two-year-old Joe Massa' parents Elouise and Danny claim a systemic failure by Northern Beaches Hospital led to Joe's preventable death. Pictured is Joe Massa. Picture: Supplied

The REACH program was started in 2013 after the death of six-month-old Kyran Day.

Similar to Joe Massa, Kyran was misdiagnosed with gastroenteritis. Many hours later it was found he had a life-threatening bowel obstruction, yet it took staff three hours to arrange emergency transport to Sydney Children’s hospital, where he later died.

Kyran’s family have confirmed they will be involved with the roundtable to improve the REACH program with Health Minister Ryan Park saying NSW Health wanted “to honour Kyran’s legacy and build on the hard work and advocacy of his family”.

The Premier agreed that the program was too obscure for many parents to access.

“I didn’t know about it as the Premier and I didn’t know about it as a dad who has taken my kids to emergency departments and I think that’s a problem,” he said.

“There’s certainly signs, they should be up in most public hospitals … but unless you know what the acronym is or what the background to it might be you might not know it is an option.”

Premier Chris Minns pictured speaking at NSW parliament Sydney. Picture: NewsWire / Monique Harmer

This comes amid a fresh tragedy at Northern Beaches Hospital, in which a newborn baby died during childbirth on Saturday, with a review launched into the circumstances of the death.

When questioned about the newborn’s death at budget estimates on Thursday afternoon, Northern Beaches Hospital Healthscope chief operating officer Peter Thomas said an early investigation had not uncovered any misconduct.

“The preliminary risk assessment has been done and hasn’t highlighted any key deficiencies as far as I’m aware,” he said.

In relation to the effectiveness of REACH, Mr Thomas admitted the program had been too “passive” at Northern Beaches Hospital and that they were now handing parents QR codes with a number to call should an issue need to be escalated.

The Healthscope executives were called before parliament on Thursday to answer questions following Joe Massa’s death after an internal investigation found the hospital had failed to identify and act upon his rapidly deteriorating condition.

During the hearing Mr Thomas said Joe should have received the intravenous fluid requested by his mother three times.

Outgoing chief executive Greg Horan expressed his condolences to Joe’s parents who sat watching in the public gallery.

“I cannot imagine the grief you are going through right now,” he said.

Originally published as Joe and Kyran’s rule: concerns over ‘unknown’ hospital parent helpline