A mother has choked back tears as she recounted harrowing details of her son's death, telling an inquiry health professionals wrote him off as "a grizzly child with Down syndrome".
Rachel Browne was giving evidence at the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability in Sydney.
She said her 16-year-old son Finlay, who lived with Down syndrome, died in December 2016 after an excruciating 71-day battle in hospital which included multiple surgeries for a serious bowel obstruction.
The ordeal started at Bathurst Hospital, in regional NSW, a few months earlier in September.
Ms Browne said when she arrived at the hospital in the afternoon, Finlay, who had to be held up, collapsed on the ground.
"The triage nurse, when I looked up rolled her eyes, and I thought that's it, we're not going to get the help we need," she said.
Ms Browne said the junior doctor who assessed her son 45 minutes later, had to be asked to speak directly to her son.
"He stood between Finlay and myself with his back to Finlay," she said.
Ms Browne said she was told a special paediatric helicopter medical service would transfer Finlay to Sydney's Westmead Children's Hospital for emergency surgery, but it never came.
He was operated on at Bathurst Hospital later that night and flown to Westmead Children's Hospital about 5.30am the next day where he spent 65 days in ICU.
She said it caused her to feel the people involved in Finlay's treatment had already written him off.
"There was a distinct lack of urgency," Ms Browne said.
"Given the serious nature of what they had discovered [they] would be actioning better monitoring of Finlay."
Ms Browne choked back tears as she told the inquiry about her son's last days.
"It became evident that if he did recover he would have no quality of life," she said.
"By the final surgery, which was quite aggressive, he was put back onto ventilation which he hated.
"I implored the medical team to stop, it was cruel to continue, he had been through enough."
Ms Browne said she did not want to discourage people with cognitive and intellectual disabilities from seeking medical help.
"There are decent people out there, there are good people."
She said there was an urgent need for better education.
On a separate occasion, when she took Finlay to the emergency department at Bathurst Hospital, she said staff "took umbrage" to the fact she had come ready for Finlay to be admitted.
"He felt that Finlay... was just a whingy child and suggested I go home and give him more Panadol and let the antibiotics take effect and in essence just let him get over it."
Ms Browne was handed a discharge summary letter for her GP which distressed her.
"It referred to Finlay as a grizzly child with Down syndrome who had poor dental hygiene and I felt that comment was completely irrelevant as to why we were there," she said.
The royal commission continues in Sydney this week and next week.
