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.
‘We felt we had to break the law’
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.
Ms Montgomery says: “We have never wanted to break the law. We felt we had to, to keep Indie-Rose alive, but that option is not even open to us at the moment.
“I’m not sleeping and my anxiety is through the roof.”
‘His quality of life has really improved’
When medical cannabis was legalised, the National Institute for Health and Care Excellence (NICE) produced guidance for the NHS saying there was not enough evidence to recommend cannabis-based medicines for severe epilepsy.
Epidoylex is recommended by NICE, but many families say it has not worked for their children.
The parents of three-year-old Charlie Hughes, from Norwich, are mounting the first legal challenge to the guidelines.
Charlie went from having up to 120 seizures a day to fewer than 20, became more vocal, took an interest in his toys and began to feed himself after taking Bedrolite, his family says.
But doctors say they cannot prescribe it due to the guidelines.
Charlie’s family could no longer afford Bedrolite, which was costing them up to £3,000 a month, so they switched to a cheaper version from Israel called Celixir20, which costs them £600 a month.
They were offered Epidoylex on the NHS, but did not want to risk giving it to Charlie after speaking to other families.
His father Matt Hughes said: “Last week he painted his first picture, he is doing so well, his quality of life has really improved. It is so unfair that the burden is on us to fund it.”
‘Alfie goes months without seizures’
Alfie Dingley, who has a severe and rare form of epilepsy, helped bring about the legalisation of medical cannabis.
In June 2018, the nine-year-old, from Kenilworth, in Warwickshire, became the first person in the UK to be granted a licence for Bedrolite. It is thought only two other people have had it granted since.
It followed a campaign led by his mother Hannah Deacon, who says the NHS prescription changed their lives.
She says: “Alfie goes for months at a time without seizures. It is not a cure, but we are not dealing with life-threatening emergencies every week.
“He was violent and aggressive before and we had no quality of life.
“It needs to be available to everyone. It will save the NHS millions of pounds a year by reducing the time children with severe epilepsy spend in hospital.”
Miss Deacon says there has been a “campaign of fear” against medical cannabis which has left doctors scared to prescribe it.
“We are so lucky, but we feel so bad for the other families in this terrible situation,” she says.
“It is barbaric what they have had to go through to keep their families safe.”
She has set up a charitable organisation called MedCan Support with Matt Hughes to help other families in this situation.
What did the Department for Health say?
A spokesman said Epidoylex could be prescribed on the NHS because there was clear evidence of its “safety, clinical and cost-effectiveness”.
He said they sympathised with “patients dealing with challenging conditions” but “more evidence” was needed “to routinely prescribe and fund other treatments on the NHS and we continue to back further research and look at how to minimise the costs of these medicines”.