Laws around the use of medical cannabis were changed in England in 2018 to recognise its benefit for some patients. BBC News spoke to the families of three children with severe epilepsy about the battle they have faced to get the treatment.
Tannine Montgomery says she has spent £34,000 and broken the law to keep her daughter alive.
Six-year-old Indie-Rose, from Clare in Suffolk, has severe epilepsy and can have up to 50 seizures a month without medical cannabis oil.
Since it was legalised two years ago, only a handful of NHS prescriptions have been issued.
The Department of Health and Social Care says more research is needed before it can be routinely prescribed.
Ms Montgomery says her daughter's life has been transformed since she started taking medical cannabis three years ago.
"We went from constant seizures and being in hospital all the time to her being happy and attending school," she says.
It remains illegal to import cannabis oils without a special licence.
Ms Montgomery says the family flew to the Netherlands to obtain it from a Dutch doctor, using a private UK prescription, because the NHS refused to pay for it.
It was costing them £1,500 a month - a cost which would triple if they acquired the licence. Their medication was seized last year at Stansted Airport.
Since Covid-19 restrictions were placed on travel, the family has been unable to fly. They have now run out of the oil, called Bedrolite, and Indie-Rose has started having severe seizures again.
They are also concerned that Brexit will have implications for obtaining it.
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