Ben Griffiths, 11, of Much Hoole, near Preston, was born with a form of cerebral palsy that causes him to have multiple epileptic fits each day.
Ben’s condition is so severe that he usually wears a helmet, but since taking some form of Dutch cannabis medicine, he has drastically reduced his seizures from up to 300 per day to between zero and five.
His family had to save, raise, and borrow money from relatives to afford the £ 2,100 monthly cost of a private prescription for the drug.
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However, on December 17th, the family learned that as a result of Brexit among 40 British children, Ben would no longer be able to secure their cannabis medication from Holland as prescriptions issued in the UK are no longer legal due to the end of the transition period submitted in an EU member state.
For a month they run out of remaining supplies of medicine and they are still waiting to find a solution.
The vital medicine, which has seen Ben’s seizures dropping to zero by as much as 300 per day on some days, was previously obtained on prescription from British doctors from the Transvaal pharmacy in the Netherlands – more than 500 miles from Lancashire, according to the agreement deleted as the UK regulations can no longer be met by pharmacies in the EU.
Ironically, the Isle of Man, just 115 miles across the Irish Sea, later in its struggle approved a legal framework for licensing the manufacture, distribution and export of cannabis medicines from the island.
Despite its proximity, according to the families, it is unlikely that the Bedrocan Dutch specialty medicine, which is at the heart of the case, could be made to exactly the specifications required.
The Isle of Man is a self-governing jurisdiction. After a series of consultations, Parliament, Tynwald, has approved changes to drug abuse rules that will allow commercial operators to manufacture medical cannabis products and are estimated to generate around £ 3 million annual benefits in the years to come.
Ben’s mother, Joanne Griffiths, said, “It’s wonderful for the Isle of Man for people who are new to medication, or for people with medical conditions that used to grow their own to stay healthy, but unfortunately we’re already taking Product that cannot be modified as it could cause seizures or not work at all.
“It’s not something neurologists advise as it could cause harm or death.
The teenager’s family was already facing a long battle over the life changing drugs that their health trust would not prescribe and have been an avid activist on the matter.
They say the terms are too restrictive on NHS-prescribed cannabis, arguing that the cost of caring for the Ben for the NHS and the problems that arise when he comes off the Bedrocan drug is way beyond the cost of the drug will lie.
A single hospital stay – a result of his medication being switched to one in the UK if the NHS didn’t fund Bedrocan – is estimated by his family at £ 31,000.
Joanne has asked her local MP Katharine Fletcher for help.
Swiss Post also asked for a comment, but received no response.
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