Every time four-year-old Indie-Rose Clarry has a seizure her life is in danger.
That’s been the reality for Indie’s parents, Anthony and Tannine, for most of her short life.
And during that time there’s been little hope that things might get better.
Indie-Rose has Dravet syndrome, a severely disabling type of epilepsy which leaves her sometimes unable to walk or chew her food. Eight different, powerful anti-epileptic drugs have failed to reduce her seizures.
But since Indie-Rose started taking CBD oil, a kind of cannabis oil legally available in this country, they’ve seen major improvements.
Now, supported by a fundraising campaign in their local community which has raised thousands of pounds, the family is hoping to travel to Holland to see if Indie would benefit even more from the higher-strength medicinal cannabis oil available there – with a higher active ingredient, called Tetrahydrocannabinol (THC), than is currently allowed in the UK.
It’s an issue that has been in the spotlight over the last few days after Billy Caldwell, 12, from County Tyrone, Northern Ireland, who also suffers from severe epilepsy, was taken seriously ill and admitted to hospital when officials at Heathrow Airport confiscated medical cannabis oil that his mum, Charlotte, had been attempting to bring into the UK from Canada.
Billy was later treated with the banned substance in hospital after the Home Office granted a 20-day licence for its use. Another boy, six-year-old Alfie Dingley, has also now been granted a special licence for medicinal cannabis to control his epilepsy. Meanwhile, in the wake of Billy’s case, Home Secretary Sajid Javid has announced a review of how medicinal cannabis is classed, while stressing it is not a first step towards the legalisation of cannabis for recreational use.
Indie’s dad, Anthony, hopes events of the last few days will make it easier for the family to bring back medicinal cannabis oil from Holland for her, should it be found to reduce her seizures even further when the family, from Clare, makes the trip to the Continent in September.
“With Indie, sudden changes in temperature can trigger a seizure, so even things like getting out of the bath can be risky,” he says. “She could have hundreds of seizures, mostly small ones, a day but the grand mal ones are the most dangerous. Any of these fits could lead to something called status epilepticus, which is a prolonged seizure or series of seizures, and can be fatal.
“Indie has been on the CBD oil five months and we have noticed a huge difference. We have not had to go to hospital since and her seizures have dramatically reduced, although there are still too many. She’s improved with her walking and speaking and has been going to nursery.”
Indie’s CBD oil comes from an Elmswell-based company, called CBD Brothers – the Original Alternative. It’s administered twice daily, under the tongue. “Legally, at the moment, in this country, oils cannot have a THC content of more than 0.2%,” says Anthony. “This is why we are going to Holland, because it will give us the option of having a higher-strength THC product, perhaps 1-3%, to see if that reduces the seizures even more.
“We are realistic. Indie will still have Dravet Syndrome. The best case scenario would be that the seizures stop and we really think she needs that extra THC to see if that’s a possibility, or to reduce them as far as we can.”
Ben Birrell, owner, manager and director of CBD Brothers, says Indie-Rose is one of around 200 children currently receiving the oil through its ‘compassion programme’. He is not allowed to make any claims about the medicinal benefits of CBD oil, which has to be marketed as a food supplement instead, wherever it is sold in the UK.
But he hopes that the government review will change the status of medicinal cannabis.
“We really believe it should be taken seriously,” he says.
Cannabis and the law
In the UK, cannabis is a controlled drug under the Misuse of Drugs Act 1971 and has since been scheduled as a substance with no medicinal value. This scheduling is what is being considered under the review announced by Sajid Javid.
Cannabis plants are made up of more than 100 different cannabinoids – the most well-known of which are CBD and THC – which have different impacts on the body and are concentrated to different extents in certain parts of the plant. THC is the psychoactive cannabinoid, which gives recreational users a “high”. CBD does not have this effect. While almost all cannabinoids are controlled substances under the law, CBD – or cannabidiol – is not.
The NHS says trials are under way to test cannabis-based drugs for conditions such as cancer pain, glaucoma and epilepsy in children but adds: “We won’t know whether these treatments are effective until the trials have finished.”
However, the situation is complex. A cannabis-based medicine called Sativex, which is a 50-50 mix of THC and CBD, has been approved for use in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA) for treating multiple sclerosis, although it isn’t widely prescribed on the NHS.
Campaigners point to this as evidence that the current position makes no sense and say the UK is one of the largest exporters of medical cannabis in the world. According to the UN’s International Narcotics Control Board the UK was the main producer and exporter of cannabis-based medicines in 2016, but the Government says it doesn’t define these as cannabis and the UK doesn’t export any cannabis in its raw form.
In October 2016, it was also reported that British Sugar was to start growing the active ingredient for a new cannabidiol-based epilepsy drug, called Epidiolex, at its Wissington glasshouse in Norfolk. Epidiolex has recently been approved in the US for treating Dravet syndrome and could be available to prescribe in Britain by mid-2019, but Anthony Clarry says that may be too late for Indie-Rose and the family believes the treatment in Holland is more proven.
CBD and Cannabis oil
As CBD oil is a legal cannabinoid it can be sold in the UK, though claims about its medicinal properties cannot be made. However, last December the World Health Organisation said evidence suggested CBD was a useful treatment for epilepsy and palliative care, and does not carry any addiction risks. Oils sold in the UK can have a maximum THC content of 0.2%. The medicinal cannabis oil that has been in the news recently has a THC level higher than 0.2% and so, unlike CBD oil, is not usually allowed in the UK. Experts say that although the type of medicinal cannabis Indie-Rose would be getting in Holland has a higher THC level than is allowed here, it would not have a psychoactive effect.
What about recreational cannnabis?
There are no plans to alter the status of recreational cannabis and the drug should not be confused with medicinal cannabis products. The NHS says regular cannabis use increases the risk of mental ill health, cardiovascular disease and stroke and contains cancer-causing chemicals, may affect fertility and impairs judgement, making accidents more likely. The risks increase the younger you start using it.