We exist to improve the lives
of everyone affected by epilepsy

Home Office returns confiscated cannabis oil to 12-year-old Northern Ireland boy with epilepsy after he has first seizure in over 300 days

18 Jun 2018

The UK Home Office has returned 12-year-old Billy Caldwell’s cannabis oil epilepsy medicine after he was taken to hospital on Friday 15 June. This was after Billy’s medicine was confiscated at Heathrow Airport on Monday 11 June.

Billy, from Castlederg in Northern Ireland, has a severe form of epilepsy and has previously had up to 100 seizures a day.

Billy currently takes cannabis-based medicine containing two parts of the cannabis plant. One is called cannabidiol, or CBD. This has been under investigation for use in some severe types of epilepsy. It is classed as a medicine by the UK’s Medicines and Health products Regulatory Agency (MHRA). While there is no licensed CBD product available in the UK, there are no restrictions on personal use of CBD oil from abroad.

However, Billy’s medicine also contains THC, another part of the cannabis plant. This part is linked to the part of cannabis which causes a ‘high’ feeling, and is illegal in the UK.

Billy’s mother, Charlotte Caldwell, was returning from Canada with Billy’s cannabis oil medicine, when it was confiscated at the airport. She stressed in an interview that abruptly stopping epilepsy medicines in this way, can result in a person’s seizures worsening.

Achieved the impossible

Ms Caldwell said they had “achieved the impossible” in getting Billy’s medicine back. However, she added that his “little body has been completely broken and his little mind”.

“No other family should have to go through this sort of ordeal.”

Another family also facing a similar situation is that of six-year-old Alfie Dingley. The family have applied to the government to be allowed to use cannabis oil for Alfie’s rare epilepsy, but have not yet had a decision.

Alfie’s mother, Hannah Deacon, has asked the home secretary to consider her son’s case after Billy’s medicine was returned to him. She said it would be “cruel” to delay giving a cannabis oil licence to Alfie.

Secretary of State for the Home Department, Sajid Javid, said in a statement that he had used “an exceptional power as Home Secretary to urgently issue a licence to allow Billy Caldwell to be treated with cannabis oil”.

“This is a very complex situation, but our immediate priority is making sure Billy receives the most effective treatment possible in a safe way.”

He said the decision was based on the advice of senior clinicians who made it clear that this was a medical emergency.

Billy’s medicine is to be administered under a special 20-day licence at Chelsea and Westminster Hospital, where Billy is being treated. 

A review into the law around medical cannabis will be carried out. Health Secretary Jeremy Hunt said he hopes this will be done in a matter of months. He told BBC Radio 4’s Today programme: “I don’t think anyone who followed [Billy’s] story could sensibly say that we are getting the law on this kind of thing right.”

First case of its kind

Billy was first given cannabis oil for his epilepsy in 2016 in the US, where medical cannabis is legal. Ms Caldwell had taken him there as his seizures had worsened. She said that the medicine had stopped Billy’s seizures.

In 2017, Billy was prescribed cannabis oil for his epilepsy on the NHS by his GP in what was called a “first case of its kind” in the UK. However, in May this year, the GP who prescribed him the medicine was told he could not do this again.

Epilepsy Action has said in a statement that it does not know whether medicines high in THC should be used to treat epilepsy. This is because of a “serious lack of evidence” on its safety and effectiveness.

However, the organisation believes that clinicians should be able to request a licence for its use in individual cases. “This would be where there are grounds to believe it may be beneficial and where treatment follows strict research guidelines overseen by a suitably qualified and experienced epilepsy clinician,” the statement said.

 

You may also be interested in…

Cannabis oil prescribed on NHS in ‘first case of its kind’ in the UK

The medicine cannabis oil has been prescribed to a young boy with epilepsy on the NHS. Reports have called this the “first case of its kind” in the UK.

There are no comments yet. Be the first to comment...

Question about your epilepsy?

Your question will be sent to our helpline advisors.

Have a comment about this page?

All comments are reviewed by a moderator before publishing. Comments will be edited or deleted if they are offensive, libellous, slanderous, abusive, commercial or irrelevant.

We ask for your email when you make a comment through this website. This means that we can let you know directly that we have replied to you. By making a comment through the website, you allow us to use the comment in our publicity without using your name. If we would like to use your name, we will email you to get your permission.

The content of this field is kept private and will not be shown publicly.
CAPTCHA
This question is for testing whether you are a human visitor and to prevent automated spam submissions.