Phill and Patricia
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.
‘In the children’s hospital system, it’s expected that parents and carers are part of that whole team … Suddenly you turn 18 … everything is new and there’s no carry-over. It’s just a really dangerous period.’
Phill had cerebral palsy, was non-verbal and used a wheelchair. He used a feeding tube which caused constant issues with his digestive system.
Two years ago doctors diagnosed Phill, then late teens, with lymphoma. They told his mum, Patricia, they were reluctant to give a conclusive diagnosis because it involved invasive testing. They said Phill wasn’t ‘a candidate for treatment’.
Patricia wasn’t sure if this was because of Phill’s recent bowel surgery or his disability.
Patricia cared for Phill at home and tried to make him as comfortable as possible. She changed his diet which worked ‘really well’. ‘His bowel … vomiting, his mucus that he was choking on all the time, improved. The only thing that hadn't improved was he wasn’t adding on weight.’
Patricia had been trying to get Phill a better wheelchair. ‘He was in pain trying to sit in this seat that they’d created. It was like it was made out of cement almost. It was so hard. And he was sitting wrong.’
Phill developed a pressure sore and Patricia took him to hospital. ‘Suddenly there was all this blaming,’ Patricia said. ‘How on earth did [you] let this happen?’ staff asked her.
The hospital was also concerned about Phill’s weight loss. Patricia tried to explain it was due to the lymphoma and bowel issues. The hospital didn’t believe Phill had lymphoma, despite being the same hospital that had given him the diagnosis. They accused Patricia of lying. Eventually staff found a note in his records that he had lymphoma, but dismissed it because it was not a formal diagnosis.
‘A social worker … jumped in … put in a request for a guardianship order.’
While this was progressing, the hospital refused to let Patricia see her son.
She begged them to change their mind and they eventually let her see him for two hours a day. She said staff watched her like she was a criminal. Meanwhile Phill wasn’t allowed to go for walks and spent all day lying in his room.
‘[He] was distressed. He was in a room on his own where no-one could see him. [He] had no means of pushing a buzzer.’
Sometimes when Patricia arrived, Phill would be screaming, his head stuck in the rails of the bed. No-one supervised his feeds.
Hospital staff told Patricia on several occasions that if Phill got an infection they would not treat it because it might be better to let him die.
Phill continued to lose weight. The hospital refused to provide palliative care because he didn’t have a formal lymphoma diagnosis.
At the guardianship hearing, the person conducting the hearing said they respected Patricia’s care for Phill. However, as Phill was losing weight and the family and the hospital couldn’t agree about his care, they appointed a public guardian.
The guardian allowed Patricia to take Phill home. The hospital was angry and didn’t provide her with a formal discharge plan, support or give her any medical supplies.
After six weeks, Patricia arranged a district nurse to start visiting Phill. The nurse told Patricia she was doing a great job for him.
Patricia tried to organise palliative care at home, but many services refused because of the allegations of neglect and the guardianship order.
Patricia prevailed, and Phill died peacefully at home a few weeks later.
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.