We need a Ryan’s Rule in Victoria to support parents of children receiving medical treatment

A recent change to the laws requiring health care staff to listen to parents of young patients could be a matter of life and death for your little one. “Ryan’s Rule” has been introduced in several states and territories in a bid to ensure that the parents of children are heard when it comes to concerns about the health and treatment of their children at hospitals.

It’s time for Victoria to introduce laws that protect our most vulnerable patients, and to give formal recognition to the long-held truth that “mum and dad know best”.

As I sat in the Coroner’s Court listening to the evidence of a grieving mother, I was struck by two tragedies.

The first was obvious: a young girl had died in the arms of her parents, hours after being discharged from hospital following a routine procedure.

But the second was less obvious. It was that the problems that led to the needless tragedy were so common. It had happened thousands of times and unless there were significant changes to medical practice, it would keep happening.

A busy hospital, pressures for beds and equipment, tired staff, tired and worried patients, a power imbalance between doctors on one hand and nurses and patients on the other. A complication masked by pain medication. A recipe for disaster. All these factors combined, lead to a lack of communication with all the right stakeholders; ultimately leaving parents unheard.

The central problem (in the case above) was this.

At the point of the hospital staff discharging the child, they saw worried looking parents, and a child that was a little lethargic. Nurses handed out the usual information for discharge, and did not note any concerns being raised by the parents about the child being too unwell to go home.

On the other hand, the child’s parents knew something was terribly wrong.

They had tried to raise concerns but didn’t feel heard. They were reassured by the hospital staff, who had already made the decision to send the child home. They didn’t want to make a scene, and they trusted the doctors and nurses when they said that she was well enough to go home.

When the child’s parents first came to Polaris Lawyers and spoke with Nick Mann, they said: “We don’t want any other family to go through what they had had to endure.”

An understandable request. But how?

Healthcare professionals have enormous knowledge and experience, and are trusted in the community for good reason. Health professionals have no legal or ethical obligation to treat or admit a patient where it is not clinically indicated.

On the other hand, there is good evidence to suggest that the “gut instincts” of parents are often correct, and we know that parents know their children better than anyone. Children too young to make their own choices about medical treatment rely on their parents to provide consent to a range of medical procedures, weighing up the benefits and risk to their child.

While a medical professional could be sanctioned or said to be negligent for failing to listen to the concerns of a patient or a parent, these consequences come after the fact. This does nothing to help an individual patient or their family to be heard and to get the treatment they need at the time they need it.

To address these issues, in 2013 the Queensland State Government introduced “Ryan’s Rule” giving every parent the right to access a clinical review of their child’s treatment simply and quickly.

Since 2013, Ryan’s Rule has been used over 80 times in Queensland, and has saved the lives of several children.

New South Wales has similarly introduced “REACH” which stands for:

• Recognise
• Engage
• Act
• Call
• Help is on its way

In the ACT, there is a patient escalation process called “CARE” that allows patients to seek advice and assistance from trained staff who are not involved in the care. That person is required to review the patient, deal with any concerns, and liaise with the patient, their family and the medical staff involved in the care.

In 2019 a similar trial commenced in Victoria by Safer Care Victoria. The program was called “HEAR ME”. It appears though that this pilot program was discontinued.

As of 2019, all hospitals are required to have processes for patients, carers and family to directly escalate care.

And at some hospitals, patients can ask to speak to patient liaison officers about their concerns regarding treatment after the event.

Each Victorian hospital is left to its own devices and has its own processes and rules about how they offer patient-led escalation, and how and when they offer escalation to their patients.  As a result, there is no proper oversight of each hospital’s performance, and Victorian patients have almost no 1 easy rule and process for communicating their concerns.

This response is patchy, and half baked.

The lives of young children will continue to be at risk in Victoria unnecessarily until there are state wide avenues for parents to be heard, and a requirement for health practitioners to listen.

This could be achieved very simply in a number of ways:

1. Introduce Ryan’s Rule – allowing patients and their parents access to a timely clinical review by someone outside the treating team.
2. Bring back “Hear Me” and require all hospitals to follow the same procedures for patient escalation.
3. Mandate that all hospitals (public and private) use a “patient discharge summary”. This is an incredible and simple idea created by former Polaris client and patient safety warrior Vickie Veitch. Before being discharged, patients or their parents are given the opportunity to make notes or comments about their condition on the discharge notes which are then held by the hospital. If, for instance, the discharge notes say that the patient is not in pain, the patient has an opportunity, before being discharged, to make a note about their own experience.

Recurring failures in Victoria’s health system affect both patients and the people dedicated to caring for them.

Injured patients require better support, and the health and legal systems require reforms just like Ryan’s Rule.

As it currently stands, patients may have legal rights if they suffer avoidable harm because of a failure of a health provider to listen to and act on concerns raised by the patient or their family.

It is hoped that the introduction of changes such as Ryan’s Rule will help to prevent those harms from occurring in the first place.

It’s for this reason that Polaris Lawyers has assisted in the creation of the FairCare Alliance, a Charity dedicated to linking injured patients and their families to critical supports, and to working to constructively reform the systems and laws that harm patients.

We look forward to saying more about the launch of FairCare Alliance in the coming weeks!