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Billy Caldwell
Billy Caldwell had his first seizure in 300 days after customs officers at Heathrow confiscated his cannabis oil from his mother. Photograph: Yui Mok/PA
Billy Caldwell had his first seizure in 300 days after customs officers at Heathrow confiscated his cannabis oil from his mother. Photograph: Yui Mok/PA

MPs condemn UK cannabis laws after epileptic boy's medication seized

This article is more than 5 years old

Urgent reform called for after government denies Billy Caldwell access to treatment

MPs have criticised the UK’s cannabis laws and called for urgent reform after a boy had his first epileptic seizure in 300 days because the government had ordered his doctor to stop prescribing him potentially life-saving cannabis oil.

Charlotte Caldwell, whose son Billy, 12, has scores of seizures every day without cannabis oil, had his medicine confiscated from her by customs agents at Heathrow on Monday.

Caldwell was not cautioned for trying to “openly smuggle” the substance into the UK from Canada, but was instead invited to the Home Office to meet the minister of state, Nick Hurd, who told her it would not be returned.

The move provoked widespread criticism, and a new all-party parliamentary group including the Tory MP Dan Poulter and the former justice minister Mike Penning has restated a recent pledge to make policy recommendations to help remedy the situation as soon as possible.

They are among an increasingly vocal group of MPs from across the political spectrum who support the legalisation of medicinal cannabis.

Crispin Blunt, a former prisons minister and co-chair of the all-parliamentary group on drug policy reform, said: Billy Caldwell is one child out of many hundreds, as well as many thousands of adults, who would benefit from cannabis derived medicines in the UK.

“We already happily accept the medicinal value of other plants such as poppies which can be used to create effective opioid painkillers and morphine as well as heroin. 75% of the British public support medical cannabis and the UK is ironically the world’s largest producer and exporter of legal cannabis.

“It is inconceivable that the Home Office continues to deny the medicines that Alfie and countless other patients so desperately need yet can access in many other countries including Canada, the United States and several EU states.

“A simple statutory instrument in Parliament will allow families out of the current absurd position of having to either expatriate themselves, or obtain cannabis illegally and face a prison sentence for caring for their own.”

Poulter, who works part time as an NHS mental health doctor, said there was increasingly strong medical evidence that medicinal cannabis improved the lives of people with several conditions, including multiple sclerosis, epilepsy and patients undergoing chemotherapy who were suffering from nausea.

“When there is growing evidence of the benefits of prescribing medicinal cannabis then it seems extraordinary that we can’t do so,” he said. “The legitimate medical needs of patients are being seen through the prism of drugs legislation from 1971. That can’t be right, sensible or humane.

“As a doctor, I can prescribe opioids and benzodiazepines to my patients, (which are illegal as street drugs) but thanks to the current law, I am unable to prescribe medicinal cannabis products to the patients who need them, despite an increasingly compelling medical case to allow me to do so.

“The law needs to change, which is why I am working with other doctors in the Parliament across all parties to present evidence to Government and to ensure that patients who can benefit from medically prescribed cannabis will be able to do so in the future.”

The government’s position is that cannabis has no medical benefit, despite a mounting body of evidence to the contrary. A doctor in Northern Ireland prescribed Caldwell cannabis oil last year, which stopped his life-threatening seizures, but the Home Office recently ordered him to stop doing so.

“This case highlights the need for urgent legislative reform to deal with medicinal cannabis were it is legally recommended,” said Órfhlaith Begley, the MP for West Tyrone, which includes Castlederg where the Caldwells live.

The MP, who was elected in a byelection in May, said she understood Caldwell had acted out of her love for her child and her desire not to see him return to enduring life-threatening seizures.

“Charlotte told me this morning that Billy had a seizure on Monday night which is heartbreaking,” she said. “I do not support breaking the law, but I can appreciate the difficult actions Charlotte has had to take as a mother.”

There is no cure for childhood epilepsy, but various treatments can improve sufferers’ quality of life and make their seizures less frequent. The NHS prescribes anti-epilepsy drugs but they commonly cause uncontrollable tremors, hair loss, swollen gums and rashes.

Studies have shown that cannabis-based anti-epilepsy medication can have a transformative effect on people who live with the condition. It is prescribed elsewhere in the world, including Canada, where Caldwell obtained a six-month supply for her son.

“Billy had a seizure this morning,” Caldwell told the Guardian. “It’s proven to me that, on the first day since his anti-epileptic medication was confiscated, it’s having a detrimental effect on him. The consequences inevitably for Billy will not be good. He’s heading towards a crisis situation.

“Without that anti-epileptic medication my little boy will die. That is the situation we are in. Nick Hurd, who planned the confiscation of my son’s life-saving medication, has signed Billy’s death warrant.”

A Home Office spokesperson said: “The Home Office is sympathetic to the difficult and rare situation that Billy and his family are faced with. Whilst we recognise that people with debilitating illnesses are looking to alleviate their symptoms, Border Force has a duty to stop banned substances from entering the UK.”

More on this story

More on this story

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  • Is medical cannabis really a magic bullet?

  • Medicinal cannabis firm buoyed by London stock market debut

  • Vaporiser maker to be first medical cannabis firm listed in London

  • Netherlands to supply medical cannabis until July despite Brexit ban

  • Mother fears son could die as Brexit stops medical cannabis supply

  • New Zealand Medical Association changes cannabis stance days before vote

  • Medical cannabis companies cleared for London stock market

  • Parents of toddler with severe epilepsy seek legal review of cannabis oil guidelines

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