Children prescribed medical cannabis given six-month reprieve from Brexit rules

By Matthew Cooper, Reporter26th January 2021News EnglandEpilepsy, Government / Politics, Long Term Care / Conditions, Medication / Vaccines, News England, NHS, Prescriptions

Imports of medical cannabis to more than 40 children with severe epilepsy have been given a six-month reprieve – after being halted due to Brexit.

The Department of Health and Social Care (DHSC) said the Dutch government has confirmed it will allow the continued supply of Bedrocan oil from the Netherlands to existing UK patients until July 1 this year.

A DHSC letter sent to Hannah Deacon, whose nine-year-old son Alfie uses the oil to prevent seizures, said a “permanent solution” to the situation is being sought.

Ms Deacon (pictured), from Warwickshire, warned earlier this month that her son’s life was at risk after the DHSC said oils dispensed in the Netherlands against UK prescriptions were “no longer an option”.

She also questioned why affected families had been given just two weeks’ notice by the DHSC that, due to the end of the Brexit transition period, prescriptions issued in the UK would no longer be lawfully dispensed in an EU member state.

The DHSC’s head of pharmacy has now confirmed that the Dutch authorities have agreed to allow “the continuation of the route of supply prior to 1 January 2021”.

Ms Deacon has also received a personal email from Prime Minister Boris Johnson, promising the Government will secure a long-term solution to the supply issue in the coming months.

The breakthrough came after a meeting between Ms Deacon and Public Health Minister Jo Churchill.

Ms Deacon, whose campaigning led to a 2018 law change allowing medical cannabis to be prescribed in the UK, is now calling on the Government to “end the suffering” of other families still forced to pay thousands of pounds a month for private prescriptions.

She said: “It is welcome news that a short-term solution has been found.

“I appreciate the DHSC and Minister Churchill reaching out to me to resolve this urgent and pressing issue.

“I would like to thank the Dutch government, the pharmacy in The Hague, my MP, Jeremy Wright, and the many peers who contacted me in support of the issue, and also Professor Mike Barnes, who continues to stand up for children like Alfie.

“We have seen a surge of will from the Government, elected Members of Parliament and the House of Lords to rectify this urgent issue.

“I now call upon the DHSC and Number 10 to end the suffering of the families forced 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.”

Neurologist Prof Barnes said: “Patients taking medical cannabis products are 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.

“I urge the Government to update its rules and attitudes on medical cannabis, and to reduce the red tape that is currently hindering the production of suitable full spectrum products in the UK.”

Some families are having to find up to £2,500 a month to cover the costs of private prescriptions.

Philip Lee, chief executive of advice and information charity Epilepsy Action, said: “We are pleased to see the action taken by the DHSC to secure continued access to finished Bedrocan oils for those with UK prescriptions on a temporary basis.

“But this is only a short-term fix in more ways than one.

“There is now a new deadline of 1 July 2021 to find a permanent solution to these supply issues.

“The Government also needs to apply the same effort and urgency to address the wider issues faced by families trying to access cannabis-based medicines for children with intractable epilepsy – namely a lack of NHS access and funding.”