Calls are increasing for easier ways to request a second medical opinion in Victoria, following the death of an eight-year-old girl at Monash Children's Hospital in Melbourne last month.
Amrita Lanka died 21 hours after being admitted to Monash Children's Hospital in April, with her parents claiming their concerns were ignored by the hospital.
Monash Health said it had since contacted the family to offer support and that an investigation would be undertaken.
In addition, the incident has been referred to Safer Care Victoria and the Coroner's court.
Amrita's story has triggered new calls for change in the health system, with families now sharing their own experiences in the Victorian hospital system that mirror those of the Lanka family.
'That could have been us'
When Keshanee De Silva brought her five-week-old son Azariah to Monash Children's Hospital last November, she had little idea of how traumatic the experience would be.
Ms De Silva said she was initially told it was a dietary issue and was sent home, only to see her son's condition worsen.
It took a 10-hour wait in the emergency department the next day before infant Ahmad was admitted to the children's ward.
Ms De Silva said she was repeatedly told that her son was fine and would be able to go home, but her instincts told her something different.
"I kept saying to them 'he's not breathing properly … I can tell something's not right'," she said.
Ms De Silva said she was left without help for most of the day, and when ringing for assistance would be left waiting for half an hour at a time for anyone to arrive.
She decided to seek a second opinion.
"I spent probably eight, nine hours that day telling nurses what my concerns were," she said.
"Eventually when I felt like I wasn't being heard, I took advantage of the internal avenue where you can call the number and let them know."
After escalating the situation through a phone call asking for a second opinion, Ms De Silva said the hospital sent in a doctor who again dismissed her concerns.
"The doctor was patronising and using standard de-escalation language but was not actually listening to my concerns," Ms De Silva said.
She said eventually a unit manager arrived who was more empathetic and understood her concerns.
Azariah was discharged after his symptoms marginally improved, although Ms De Silva believes the hospital had little to do with his recovery.
"I could really relate to [Amrita's] mother's experience because of what we went through at the same hospital," Ms De Silva said.
Victoria lags behind in patient escalation systems
Health bodies are now calling for patient escalation systems like the one Ms De Silva used at Monash Children's Hospital to be standardised and implemented at every hospital in the state.
Australian Patients Association chief executive Stephen Mason said that patient escalation systems active interstate — where families can raise concerns if a patient's health condition is getting worse — are not as all-encompassing in Victoria.
"We know that in Queensland there’s such a system and I believe in WA there’s such a system, so I think after this tragedy it needs to be considered in Victoria," he said.
In Queensland, the patient escalation procedure is known as Ryan's Rule, named after toddler Ryan Saunders who died in Rockhampton in 2011, with the coroner finding his death may have been prevented if he had been treated in a timely manner.
In Western Australia last year, Aishwarya's Care was established following the death of a seven-year-old and subsequent inquiry into her treatment at Perth Children's Hospital.
In Victoria, there is no blanket system for all hospitals like in other states.
While an escalation pilot program was launched in 2019 by Safer Care Victoria called HEAR Me, patient escalation is still determined by individual hospital policy.
In a statement, a Monash Health spokesperson defended its escalation policies, saying they were clearly accessible to all patients and families.
"Our patient escalation procedures are displayed visibly in all areas within our emergency departments, wards and website," a Monash Health spokesperson said.
For families like the Lanka family who were interacting with hospital staff in their second language, there may be additional barriers to requesting a second opinion.
The family said they were not aware that escalating their daughter's case was an option.
Mr Mason said this was common in many of the stories he had heard.
"The main complaint is lack of communication," he said.
"When they feel totally neglected and don't know where to turn to or who to talk to, that's when they start to panic."
Calls continue for health policy overhaul
While other states were spurred by tragedies to enact changes in health policy, the Victorian government has still not committed to introducing a standardised escalation policy.
"Should Monash, Safer Care [Victoria] or indeed the Coroner's processes identify any areas where we can do better, then of course we would support that," Health Minister Martin Foley said.
The Opposition has criticised the inaction, calling it another sign of a health system in crisis.
"The entire system is in crisis, it can't cope. This is a dire situation when you've got the tragic story of that little girl," Shadow Health Minister Georgie Crozier said.
"They've had no response from government, they've had no apology, they've had nothing."
Mr Mason said parents who experience the tragedy of losing a child are motivated not by a desire for compensation or revenge, but for positive change.
"They want to know what's gone wrong, they want transparency, they want to know the truth," Mr Mason said.
