Jacinta and Lillian
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
‘Even though Jacinta was a young, very happy and a much loved member of our family, we were always asked whether we wanted them to actively treat her!’ Lillian told the Royal Commission. ‘How often is that asked of young adult, able-bodied patients?’
Jacinta had cerebral palsy and was oxygen dependent. Lillian and her husband happily looked after their daughter at home for almost 30 years. Jacinta spent most of her life happy, stable and well. She only interacted with the health care system when she was too unwell to be managed safely at home. This didn’t happen often.
When it did happen, Lillian said, the medical care was often neglectful. It compromised Jacinta’s chances of recovery, and even of surviving the admission. Her parents became terrified of leaving her in the care of hospital staff.
Recently Jacinta contracted influenza A and her parents took her to the emergency department. She had some respiratory distress, so she needed investigations. In the process of getting a chest x-ray, one of Jacinta’s bones was badly broken, requiring four hours of surgery. Due to the existing respiratory issues, she was admitted to the intensive care unit.
Many complications arose, caused by the medical care itself, followed by two re-admissions to hospital.
When she was re-admitted for the second time, Jacinta was placed a long way from the nurses’ station. Despite the fact that Jacinta was very unwell, she was left unmonitored. With no intravenous access for many hours, she missed out on vital fluids and antibiotics.
‘I nursed Jacinta for days on end with no sleep using monitoring equipment I brought from home. There was no urgency/interest from the medical staff,’ Lillian said.
Jacinta’s health deteriorated and her family insisted that an advanced medical team be called urgently. She was placed on life support. Jacinta died in the intensive care unit five days later.
Jacinta’s parents offered suggestions to the hospital regarding ways to improve outcomes for patients like their daughter. They had hoped the hospital was genuinely interested, but having heard nothing for several weeks, they now think the hospital is hoping they ‘will just lose interest’.
Lillian says she has suggestions ‘that would definitely reduce the chances of the ongoing harm being inflicted in our hospitals’.
‘It is too late for my family … we have paid the ultimate price.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.