LEIGH SALES, PRESENTER: Lots of Australians have chronic medical conditions and you'd like to think that when they find treatments that alleviate their pain they can have access to them. That's particularly the case when it's children who are suffering.

Last year medicinal cannabis was legalised in Australia for use under strict conditions but advocates say it's still extremely difficult to get your hands on it.

Parents of children with severe epilepsy are one of the main groups affected and many are at their wit's end, as Claire Moody reports.

SHELLIE MARTIN, SOPHIE'S MOTHER: Good morning.

SOPHIE MARTIN'S FATHER: Good morning.

SHELLIE MARTIN: Hello. Stretch. A big stretch.

SOPHIE MARTIN'S FATHER: A big stretch.

SHELLIE MARTIN: For Sophie it effects every single aspect of her body and her daily life. She has many seizures, hundreds of seizures even on a good day.

You ready? Ready?

CLAIRE MOODIE, REPORTER: Sophie Martin has Dravet syndrome, a rare form of severe epilepsy. On top of that she has cerebral palsy. She's been in and out of hospital since she was ten weeks old. Including about 100 times in intensive care.

SHELLIE MARTIN: When we're not in hospital, the bad days are where Sophie is not able to even move. As you can see, our home is like a miniature a mini hospital. We have our resuscitation trolley here.

CLAIRE MOODIE: Sophie has spent her life on a cocktail of heavy drugs that have taken an enormous toll on her body. A few months ago after a steep decline in her condition and yet another severe seizure, her parents decided to take a gamble.

SHELLIE MARTIN: I said to the doctors I'm just doing this now on the record because we had no more options. They were not able to approve the use but they were not going to say don't do it.

CLAIRE MOODIE: The couple began importing this low THC cannabis oil from the US. Where there's been anecdotal evidence of dramatic benefits for some children with severe epilepsy.

SHELLIE MARTIN: Since using the cannabis oil, Sophie went 16 weeks without a status epilepticus event and previous to us starting that oil, she was having these events every two to four weeks.

CLAIRE MOODIE: Medicinal cannabis was legalised for use under strict conditions by the Federal Government last year, but those conditions are very hard to meet. So for the Martins and many other families, nothing has changed.

They're still buying their own supply on the black market.

CAROL IRELAND, EPILEPSY ACTION AUSTRALIA: No. You have spoken to your neurologist now?

CLAIRE MOODIE: Advocates report similar concerns from families around the country.

CAROL IRELAND: We're certainly hearing from families who are currently using illicit product and they're going to their doctors and actually trying to get a prescription for a legal product. They don't want to be breaking the law. However that's really really difficult. I mean there are no clinical guidelines available at the moment.

When they seek approval from the Government, the Government is expecting some research in terms of the efficacy of the drug that they're asking for.

That research is not there yet. So the doctors aren't comfortable. The doctors aren't prescribing.

CLAIRE MOODIE: Joelle Neville is another West Australian parent who is caught in a difficult position.

JOELLE NEVILLE, AVA'S MOTHER: When we started medicinal cannabis three years ago, Ava was on four anti-epileptics and still having six to eight seizures a day. When we started with the medicinal cannabis she was seizure-free within 10 days.

CLAIRE MOODIE: But now imports of the oil she's been buying illegally for the last three years have been blocked.

So you can't now access the medicinal cannabis online?

JOELLE NEVILLE: I can't. They won't ship to Australia because they know that they could get in to so much trouble for it. I was just after an update on the special access scheme application for my daughter Ava Neville.

CLAIRE MOODIE: She's been trying for months to get a similar product legally on prescription, being bounced between doctors and the Therapeutic Goods Administration.

JOELLE NEVILLE: I feel like I've had to threaten to get paperwork lodged, to try and get a supply.

CLAIRE MOODIE: But the problem is that many of the products available haven't undergone any formal safety checks in Australia and compounding the hurdles, according to families, is an extra layer of red tape. State as well as Commonwealth approvals needed before medicinal cannabis can be prescribed and each state has its own regime.

DR OMAR KHORSHID, AMA WA: The thing about medicinal cannabis is we don't know a lot about it and don't know how much we should give. We don't know for whom it works and for whom it doesn't work. We don't know for whom it is actually dangerous?

So these are a lot of questions that are asked for all drugs and they haven't yet been answered for this drug. What that means for the medical profession is we have got to be very very cautious about how we implement medicinal cannabis use.

CLAIRE MOODIE: A recent Victorian trial found 40 per cent of children had their seizures halved while on medicinal cannabis and 5 per cent became seizure-free.

But the Australian Medical Association argues far more research is needed before the drugs can be widely used.

It believes the new laws were premature.

DR OMAR KHORSHID: My first reaction was that it was a populous move by a Government responding to a community need and it's very easy for a politician to say yes to people. But at the end of the day, when a doctor is sitting with a patient, they have to have a different conversation.

SHELLIE MARTIN: Get your legs. Good girl. Ready? 1, 2, 3. Good girl.

CLAIRE MOODIE: A few weeks ago the Martins had to make a very difficult decision.

SHELLIE MARTIN: She's at a point in her illness that the suffering is really bad and it is more significant than the positives when she's unwell and we're having more unwell days than we are having positive days.

So it was decided as a team that we were transferred over to palliative care and a not for resuscitation order is now in place. So it's terrifying to think that when she has one of her bad seizures it might be the end.

I love you too, baby. Kiss. Oh, push me away!

CLAIRE MOODIE: They want to continue to use their medicinal cannabis but under medical guidance. They don't think it's a miracle cure but believe it would at least improve Sophie's quality of life.

SHELLIE MARTIN: We're flying absolutely blind and taking a massive risk because we don't know what it's doing in regards to her other medication management.

But we should not have to be worried about this. We should be allowed to do this with supervision and understanding and guidance really.

It's crazy that we're not.

CLAIRE MOODIE: Since 7.30 visited Joelle Neville earlier this month, the TGA has offered an alternative prescription which could possibly work but she says it shouldn't be this hard for parents who are already struggling.

She wants a national body to streamline the rollout of medicinal cannabis, while research and supply issues are sorted out.

JOELLE NEVILLE: Navigate the bureaucracy for us. Take the pressure off the families. We have got enough going on. Somebody needs to put their hand up and be a champion for all of us. And we can't do it. We're too tired.