Campaigner Emma Appleby flew back to Britain from the Netherlands on Saturday morning with her partner Lee and a supply of medical cannabis oils for nine-year-old Teagan.
But the three-month supply of medicines – obtained legally for around £4,600 in the Netherlands – was confiscated on after the family landed at Southend airport in Essex.
Ms Appleby’s daughter suffers from a rare chromosomal disorder called Isodicentric 15 as well as Lennox-Gastaut syndrome, which causes up to 300 seizures a day. She suffered a seizure while on the plane.
The family, from Aylesham in Kent, got the medicine prescribed by a paediatric neurologist at the Erasmus Hospital in Rotterdam, collected it from a pharmacy and paid using fundraised money.
“I’m really gutted,” said Ms Appleby. “They just took everything. They knew apparently, they had been notified from social media. They asked me at border control how long we were away for. I thought, ‘They’re asking questions as someone’s notified them’. Then they asked if I had anything to declare, and there were loads of them waiting, so I knew if I said no I was going to get myself in deeper so I just said yes.”
She said Border Force staff were told not to destroy the medicine but to seize it and hold it, and she still hopes to apply for an import licence to get it back.
Ms Appleby was met and comforted at the airport by fellow campaigner Hannah Deacon, who last year became the first person allowed to bring THC oil through a UK airport legally for her seven-year-old son Alfie Dingley, who also has epilepsy.
Ms Deacon has said the substance has helping her son lead a “pretty normal life”.
The law in the UK was changed last November to make access to medical cannabis legal but parents have been struggling to secure the prescriptions that allow for licenses, in part due to reluctance within the medical community.
In October The Independent revealed how families applying for licenses through a temporary approval panel were being “frustrated” by flat refusals from their doctors.
Health secretary Matt Hancock said in the Commons last month that his “heart goes out” to parents experiencing anguish over difficulties obtaining medicinal cannabis. He said he is working to “unblock” some of the challenges in the system but also claimed “these things need to be clinician-led”.
Tory MP Sir Mike Penning, co-chairman of the All Party Parliamentary Group on Medical Cannabis Under Prescription, said: “This is a shattering blow for Emma and Teagan. It’s a damning indictment of the way this policy has been implemented. We need compassion not entrenched positions. I will be urging all my parliamentary colleagues to get this medicine returned to Emma soonest and demanding that the Department for Health, the NHS and everyone involved gets together urgently so families don’t have to go through the stress and trauma of travelling abroad to get a medicine that is now legal here.
Peter Carroll, director of the campaign group End Our Pain, said no family should go through what Emma, Teagan and Lee have been through. “This is a medicine that’s legal in the UK,” he said. “The law was changed for a reason.
“It was changed on scientific advice as well. To put these families who have already got this stress and worry of caring for very sick children through all the trauma – Emma has been passed from pillar to post, she’s tried to do the right thing at every stage of this process. I call on everybody from Matt Hancock, the leaders of the NHS, the leaders of all the medical professions, I know you must all be caring people but the system that you have put in place is resulting in this kind of trauma for families like Emma’s.”
Mr Carroll said the Home Office had been approached for an import licence on compassionate grounds to help Ms Abbleby’s daughter ahead of the journey but this had been refused.
A government spokesman said: “The decision to prescribe cannabis-based products for medicinal use is a clinical decision for specialist hospital doctors, made with patients and their families, taking into account clinical guidance. It is unlawful to import unlicensed cannabis-based products for medicinal use to the UK without the prescription of a specialist doctor and a Home Office importation licence.
“Border Force has a duty to enforce the law and stop the unlawful import of controlled substances into the UK.”
Additional reporting by PA
Join our new commenting forum
Join thought-provoking conversations, follow other Independent readers and see their replies