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I smuggled cannabis oil to help my son

Karen is bringing the same product back for her six-year-old son, Murray, who has a rare and severe form of epilepsy: Doose Syndrome.

Like Cole, Murray has seizures. During his worst phase, he was having 12 a day.

As a result, he was put on strong medication which Karen said led to him lying in a “vegetative state” in hospital.

She said: “He can be awake but he’s probably not aware that anyone’s there. He can’t swallow, he can’t eat, he can’t talk, he can’t move. He can’t do anything.”

In January 2019, Murray’s condition got worse and he was admitted to hospital, where he spent most of his time until May.

Karen said: “I honestly thought that’s it, he’s going to die. How can anybody survive this?”

Although Murray spent most of this year in hospital, he is now back in school for a few hours a day.

Karen, like Lisa, is convinced this change is due to the product they have been bringing in from the Netherlands since March.

The health board responsible for Murray’s care said it could not discuss his case.

But speaking more generally about what might happen if parents admit to dosing their own children, Tracey Gillies, the medical director for NHS Lothian, said: “The hospital has to take steps to make sure that the child is looked after as safely as possible and discuss that with others who have a relevant interest in safeguarding children.”

She said the hospital could not turn a blind eye, adding: “There would be a child protection issue to be consider.”

According to the Home Office, it is illegal to bring cannabis oil into the country without an import licence.

The product

Bedrolite is a medical cannabis oil made by Bedrocan, which is the sole supplier of medicinal cannabis to the Dutch government’s Office for Medicinal Cannabis.

The oil contains two key active compounds in cannabis for medical use: THC, which is psychoactive and gives a feeling of being “high”, and CBD, which does not.

Until last year, medical cannabis products with THC were illegal in the UK.

But on 1 November 2018, all cannabis medicines were moved from Schedule 1 of the Misuse of Drugs Regulations to Schedule 2, to recognise there is evidence of benefit for some patients.

Legally, doctors can prescribe products like Bedrolite, which contain the psychoactive component THC.

There is a CBD-only drug called Epidiolex, which is available in the UK under a compassionate access programme run by its manufacturer GWPharma.

Karen, whose son Murray tried Epidiolex, said: “It was absolutely brilliant but after three months it just stopped working for some reason.”

Bedrolite is 9% CBD and less than 1% THC.

Since Murray and Cole started taking cannabis oil with THC in March, Karen and Lisa report seeing a huge improvement. They say both boys have been having fewer seizures and both are out both out of hospital and back in school.

Is it a miracle drug?

Despite the law change, Karen and Lisa have been unable to get a prescription on the NHS for the drug they are convinced is helping their boys.

After the law was changed, the British Paediatric Neurology Association (BPNA) issued guidelines to its members stating that there is “no high quality evidence” to support the use of THC – the psychoactive compound in Bedrolite.

Dr Finbar O’Callaghan from the BPNA told Disclosure: “The NHS are only going to pay for products where there’s evidence of efficacy and safety.”

He added: “Clinicians are only going to feel confident about prescribing medicines which they know to be efficacious and safe for their patients and that evidence wasn’t there and so there’s going to be a reluctance on behalf of the clinicians.”

But not all doctors necessarily agree this is the best way forward.

Dr Bláthnaid McCoy is a paediatric neurologist based in Toronto.

She treats some of her patients with medical cannabis products that contain THC.

Dr McCoy said she did not think medical cannabis was a miracle drug but she did believe it should be considered as an option.

She said: “I think it’s a very complicated drug though. It isn’t a single drug and we need more research to better understand exactly what should be in there.”

Public funds are now being put into trialling more cannabis medicines – and new Nice guidelines are due in October 2019.

Both the UK and the Scottish government have said that, as things stand, whether or not to write a prescription for medical cannabis will remain a “clinical decision”.

Private prescriptions

Karen and Lisa have been back and forth to the Netherlands three times this year at a cost, they estimate, of almost £15,000 between them.

But their trips might be coming to an end.

Last week, Murray and Cole were given a private prescription at the Portland Hospital in London.

Lisa and Karen were paying £160 per bottle of oil in the Netherlands. That same bottle will now cost £550 because the medicine has to be specially imported.

For Lisa and Karen, these prescriptions represent a victory.

Lisa added: “For the first time a medical professional that deals with paediatric neurology has agreed that what I’m doing for Cole is the right thing and that in itself is huge.”

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