Schizophrenia has left an indelible mark on Don McDonald’s life, as a parent - and as a mental health advocate.

It’s a mark that not even the gentle shore breaks of Port Stephens have managed to wash away.

Mr McDonald and his wife Marilyn, had not long retired to Nelson Bay when people began to approach them with stories of suicide and mental health.

It was all too familiar for Mr McDonald, who has coordinated a forum on the topic on May 4, in Port Stephens where residents will be able to ask questions.

His son Warwick McDonald was a boy starting out at high school in Sydney’s eastern suburbs when the family’s life was upended.

“He started to act bizarrely, all of a sudden, and we received reports from school that he had been absent,” Mr McDonald said.

“I stayed at home one morning to investigate. I went into his room and by chance I slid open his wardrobe door and he was curled up in a ball.

“I asked, ‘what are you doing’? He said, ‘can’t you hear them out there’?”

Mr McDonald coaxed Warwick out of the wardrobe and showed him there was no one around.

“He said ‘they must have gone’.”

The school also expressed concerns. Warwick was admitted to Randwick Hospital.

“The doctor said ‘your boy’s got schizophrenia’,” Mr McDonald said.

“I replied, ‘what’s that?’”

In the psychiatric ward Warwick was administered haloperidol, a powerful anti-psychotic used to treat hallucinations. It had an immediate side-affect.

“It paralysed him down one side, it terrified him. It terrified us,” Mr McDonald said.

“It had little benefit for him with horrendous side effects, so he became hostile about taking them and he believed the doctors were trying to poison him.

”He was soon discharged because the psych ward was over flowing – I soon realised this was happening to 10s of thousands of Australian families.”

Mr McDonald was one of 10 children.

“I lost two brothers and a sister, and Dad died at 54. He was a cleaner,” he said.

“Nothing has come easy and that’s why I spent a lot of time helping workers in the union.”

He worked as a conciliation officer, in workers compensation cases, while Mrs McDonald worked as a travel agent.

By the time Warwick was diagnosed Mr McDonald was a senior figure in the CFMEU.

“I had some influence in the Labor party,” he said.

“I decided that someone had to take hold of this issue and actually do something. I left my job, I had spent many years looking after other families, it was time to look after my own.”