Little Olivia Heary lies in the high dependency unit of the Royal Preston Hospital today as her parents plead with the Home Office to allow her stronger cannabis medication.
Just days after Home Secretary Sajid Javid announced doctors will start prescribing products derived from the drug to “patients with exceptional clinical need” by the autumn, mum Jenna Heary says her daughter needs it now.
The condition of the two-year-old, who suffers from a severe form of epilepsy, took a turn for the worse on Sunday night when she had a three-hour seizure and was rushed into hospital.
While Olivia has been improving in recent weeks using cannabis oil as part of a medical trial by an American drug company, the toddler’s sudden deterioration came as a shock to her parents and doctors.
“The dose she is on is very small,” said Jenna. “But we can’t give her a higher dosage because it is illegal. We could get prosecuted.
“So we are appplying for a licence from the Home Office to allow us to do that. We need to get the ball rolling straight away.
“The announcement by the Home Secretary is great news. But we can’t wait until the autumn.”
Olivia is given cannabis oil twice a day to reduce the number and severity of her seizures. Up until the weekend she was having as many as 20 to 30 a day.
As the law stands in the UK, the medication can only contain a maximum of 0.2 per cent of THC, the psychoactive element of cannabis plants which gives recreational users a “high”.
Recent high-profile medical cases involving children like 12-year-old Billy Caldwell have prompted the radical re-think by the Government - a well-publicised campaign by Billy’s mother Charlottte Caldwell forced the Home Office to grant an emergency licence to his doctors to treat him with the drug.
It is this type of licence that Jenna and Olivia’s dad Matthew Botham are pushing for.
“Her condition has gone worse and we are trying our best to see if we can get this licence for a higher dose to be prescribed,” explained Jenna. “I’m reasonable confident we can get it. But hopefully it won’t take long.
“We have been talking to Olivia’s neurologist and she says that if she can get the OK to prescribe it she is willing to do that. I’m sure there are other patients in a similar situation, but the doctor says Olivia will be top of her list.”
Sajid Javid’s announcement at the end of last week that medicinal products derived from cannabis will soon be available on prescription has been welcomed by campaigners who believe the drug has widespread health benefits.
But it will only be available to patients considered to have “exceptional” clinical needs.
Charlotte Caldwell, who hit the headlines when she flew to Canada to get a new supply of cannabis oil for her son Billy, said the Government re-think was “incredible”.
“For the first time in months I’m almost lost for words, other than ‘thank you Sajid Javid,’” she said.
And Karen Gray, whose son Murray has also been treated with medical cannabis for his epilepsy, said the news was a victory for those who had been campaigning for a change in the law.
“It is really going to help children out there, so it’s brilliant news,” said Karen, who raised a 240,000-name petition calling for the drug to be made available on the NHS. “There are a lot of kids out there who aren’t getting this help and hopefully now they will.”
The legal status of the drug has changed in just a few short weeks.
In mid-June Charlotte Caldwell flew into Britain from Canada with supplies of cannabis oil to treat her son Billy’s epilepsy, only for Border Force officers to confiscate the drug.
The furore that followed prompted the Government to order a review of the medicinal properties of cannabis and the Chief Medical Officer for England, Prof Dame Sally Davies, concluded it had therapeutic benefits.
As a result it was reclassified as no longer a Schedule 1 drug with no medicinal value, but a Schedule 2 substance which could be controlled for medical use.
Cannabis plants contain more than 100 different substances known as cannabinoids, which have different effects on the body. The two best-known are THC and CBD.
THC is the psychoactive cannabinoid which gives users a “high.” But CBD does not have that effect and is not a controlled subtance under the Misuse of Drugs Act.
According to the Home Office cannabis oil can contain a maximum THC content of 0.2 per cent. Anything stronger is illegal.
On the other hand CBD oil is perfectly legal and is sold in the UK by retailers, including Holland and Barrett, as a “food supplement.” It is said to have medicinal properties including pain relief, relieving inflammation and reducing anxiety.
Osteopath Nick Tofalos, who runs Garstang Natural Health Centre and sells CBD, admitted the change of heart by the Home Office was “definitely good news.”
“I think it is another step towards removing the stigma of cannabis,” he said. “It is a positive and will create more awareness of cannabis because there is so much prejudice and ignorance in how it is portrayed.
“Alcohol is far more dangerous and damaging to our society. You only need to walk through a town centre on a Saturday night to see the mayhem caused by alcohol. When you look at the facts about cannabis it’s a very different story.”
First step towards decriminalisation?
Home Secretary Sajid Javid has strenuously denied that allowing cannabis-derived products to be prescribed on the NHS is the opening move towards decriminalising the drug in the UK.
“In no way is it a first step to the legalisation of cannabis for recreational use,” he said. “Recent cases involving sick children made it clear to me that our position on cannabis-related medicinal products was not satisfactory.”
Canada will become the latest country to decriminalise the Class B drug for recreational use on October 17. It is already legal there for medical reasons.
Austria decriminalised the use of cannabis in January 2016, in Belgium it is not a legal offence to have up to three grams and in the Czech Republic the limit is 15 grams.
Danish police only occasionally enforce the law on cannabis, in Germany recreational use is allowed and so is possessing a small amount in Greece. Italy and Luxembourg have both decriminalised recreational use. In the Netherlands it is allowed up to a maximum of five grams and tolerated in “coffe shops.”
Countries which allow cannabis products for medical use include Germany, Greece, Finland, Italy, Norway, Switzerland, Denmark, Cyprus, Malta and Poland.
Mike Dobson, chairman of the Preston Cannabis Club, has been trying to get a licence from the Home Office to both cultivate the drug and supply members with strictly controlled amounts. So far, despite asking for a judicial review, he has failed to get approval, but is refusing to give up his fight.
He said: “I am very happy that the Home Secretary has completely reversed the decison made last year. In relation to our application the Home Office clearly stated that there were no circumstances under which they would consider issuing licences for personal use.
“As far as we are aware we are the only organisation to take the Home Secretary to court over personal licences. We have been continuing to hound the Home Office practically every week for the past two years.
“Now the new Home Secretary has come into office and probably taken legal advice and found they have been making unlawful decisions. I hope that he now takes the bull by the horns and realises the amount of human suffering that has gone on under this restrictive and blinkered regime.”