Garry Clarke’s wife, Rox Clarke, had melanoma that spread to her brain.

She died peacefully at home on Thursday, surrounded by loved ones.

Mr Clarke, of Windale, said his wife used cannabis oil for about a year to deal with the disease and the side effects of radiation and chemotherapy treatment.

This had “spectacular results”, easing pain and inflammation, inducing sleep and stimulating appetite.

The benefit of hindsight led Mr Clarke to believe that the cannabis oil was having a better effect than pharmaceutical-based drugs.

Mrs Clarke, 39, stopped taking the cannabis oil over concern about the stigma associated with the drug, such as being looked down on as a “lazy stoner”.

When she stopped using the cannabis, her condition deteriorated and she ended up in the oncology ward at Calvary Mater Newcastle Hospital.

Mrs Clarke was registered with the NSW Terminal Illness Cannabis Scheme, which allowed her to use cannabis in the home – but not hospitals.

A Ministry of Health statement said the scheme had not legalised cannabis. It provided guidance to police to use discretion with affected people using cannabis. 

“Because the products being used are not legal, hospitals cannot store or administer these products,” it said.

The ministry statement said hospital staff “generally counsel against the use of such products during hospitalisation”.

So if Mrs Clarke had wanted to resume use of cannabis oil in hospital, she would have been unable to do so.

This is something that Mr Clarke wants to change. He raised his concerns on Tuesday with NSW Chief Scientist Mary O’Kane, who is reviewing the scheme.

Aside from the scheme, Mr Clarke also asked the NSW government why the planned and much publicised medicinal cannabis trials had been delayed.

The Calvary Mater hospital is earmarked for one of these trials, which Premier Mike Baird announced in December 2014.

Mr Clarke was concerned the research to accompany the trials would simply duplicate pre-existing knowledge, but the ministry statement said: “The palliative care clinical trial will bring important new information”.

Mr Clarke was concerned the trials would be useless for people with brain cancer because they need cannabis oil, rather than vaporised cannabis.

Vaporised cannabis could make brain cancer patients cough, causing immense pain.

The ministry statement said the initial clinical trial would use a vaporised cannabis product.

However, it said “the planned definitive trial will use both a vaporised product and a tablet”.

Mr Clarke said the cannabis oil his wife previously used was provided on a free and compassionate basis.

Such suppliers should be rewarded for their “innovation” in providing medicinal cannabis under threat of prosecution, he said.

He added that pharmaceutical companies should not be allowed to hijack the supply chain for cannabis products in NSW.

They had been partly responsible for “ensuring the misinformation on cannabis for 70 years”.