The partner of a terminally ill woman has complained to the Premier about delays in NSW medicinal cannabis trials.

Newcastle woman Roxanne Clarke, 39, has invited us into her home in the final days of her life because she wants to make a point.

"I think the Government should allow the use of marijuana to help people who are going through the same as what I'm going through," she said.

She has stage four melanoma which is metastatic in her brain.

She has been discharged from hospital so that she can die at home with husband Garry and other family members by her side.

'It was as if she'd never had radiation'

When we discuss the interview the night before, Garry explains that Roxanne is up and about and in good spirits.

But by the time we arrive, she is in bed and barely able to speak.

Still she is keen to tell us why she is prepared to appear on camera.

"Because people shouldn't have to suffer, it's just so painful and it's not fair," she said

"She's hopeful that by telling her story at this stage that she can basically shame the politicians and the bureaucrats into making these changes happen," Garry added.

Roxanne used cannabis oil to treat the side effects of chemotherapy and radiation.

Roxanne Clarke used cannabis oil to treat the side effects of chemotherapy and radiation. ( Supplied )

"It was as if she'd never had radiation treatment. She'd get a little bit nauseous, we'd give her a little bit of cannabis oil, the nausea would go away," Garry said.

"It treated the side effects from the radiation and the chemotherapies. It just treated it. I can't explain it. The nausea, the vomiting, not being able to do anything, Rox had none of those side effects."

Roxanne and Gary get the cannabis from a black market supplier who provides it free of charge to terminally ill patients.

Roxanne is registered on the Government's "terminal illness cannabis scheme", which gives police discretion not to charge her.

But the scheme only allows her to possess one gram of cannabis — Roxanne's daily dose.

And she can only use the drug at home.

'Minister has done an awful job on this': husband

She was recently admitted to Newcastle's Mater Hospital — the very place where Australia's first trials of medicinal cannabis had been due to start early this year. But delays mean she has been unable to benefit.

"I believe that had they run the trials in a proper timeframe that by the time Rox got to hospital, the hospital would already be aware of the benefits of cannabis oil, the doctors would have been well-educated and they would have been quite happy as a regular course of treatment to dispense cannabis as a means of treating some of the symptoms," Garry said.

He contacted the Minister for Medical Research Pru Goward complaining about the delays.

He said his concerns were met with accusations.

"They'd accused me of demanding that the doctors be able to prescribe cannabis immediately and that we had been taking cannabis into the hospital system without our doctor's knowledge and consent," he said.

Now Garry has called for Ms Goward to be sacked.

"I think the Minister has done an awful job on this and it's time the Minister be removed and that the Government actually put somebody in charge of this process that is truly committed to both medicinal cannabis law reform and truly innovative medicinal cannabis research," he said.

Trials have to be scientifically designed, take time: Minister

Ms Goward has denied all knowledge of complaints made by Garry.

She said the trials could not start until she had approval from the Therapeutic Goods Administration, which should happen in the next week or so.

"Our trials have to be scientifically designed and it takes time," she said.

"Much more time than the public, including myself, would have liked and I have been conscious, terribly conscious that in the meantime people will have lost their lives, but that is the nature of a scientifically valid approach and I know that in the end we will have better results and we will be able to help more people because we've done it the right way."

Time is not something that Roxanne and Garry Clarke have on their side.