Alfie Dingley: Six-month reprieve for EU cannabis medicine import

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Hannah Deacon and Alfie DingleyImage source, Hannah Deacon
Image caption,

Alfie Dingley, pictured with his mother, is "well and healthy" while using the NHS prescription, Hannah Deacon said.

The mother of a boy with severe epilepsy has welcomed news that medical cannabis imports from the Netherlands can continue for a while longer.

Imports were to stop after Brexit but have been given a six-month reprieve.

Nine-year-old Alfie Dingley, from Warwickshire, would be in danger if he had to use a different product, mum Hannah Deacon had said.

Dutch authorities will allow the continued supply of Bedrocan oil to existing UK patients until 1 July.

The Department of Health told Ms Deacon a "permanent solution" was being sought.

Alfie, from Kenilworth, has a form of epilepsy that previously led him to have up to 150 seizures a week.

His family found his condition improved when he was given a cannabis-based medication in the Netherlands in 2017 and his mother petitioned the government for it to be allowed through the NHS.

But, due to the end of the Brexit transition period, the family were told prescriptions issued in the UK would no longer be lawfully dispensed in an EU member state.

Image source, Hannah Deacon
Image caption,

Alfie's family found his condition improved when he was given a cannabis-based medication in 2017 and his mother petitioned the government the following year.

The government had previously said there was a range of alternative medicines for Alfie, but neurologist Prof Mike Barnes, who also led the fight with the Home Office to get Bedrolite prescribed for Alfie, said it was "not like swapping one type of aspirin for another".

However, a breakthrough came after a meeting between Ms Deacon and public health minister Jo Churchill.

Ms Deacon said it was welcome news that a short-term solution had been found.

She also called on the government to "end the suffering of the families" who still had to "raise huge sums of money for their private prescriptions".

"When there is will, solutions can clearly be found. Alfie remains well and healthy due to his NHS prescription and I do not have to worry every day about raising thousands of pounds to pay for his medicine."

Prof Barnes, who backed Ms Deacon and 40 other families, said those taking medical cannabis products were in "dire need of a secure supply chain".

"If they do not receive their medicines, epileptic children can become extremely ill very quickly, and patients cannot be easily transferred from one medical cannabis medicine to another," he said.

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