Edinburgh family's joy after son given six month reprieve over access to 'life saving' cannabis oil drugs
An Edinburgh family have told of their joy after the Dutch government agreed to give a six month reprieve on access to 'life-saving' cannabis oil supply for their disabled son.
Brexit had meant that Bedica and Bedrolite oils, which are solely produced by Dutch firm Transvaal Pharmacy, were unable to be legally prescribed for UK residents.
But a Dutch chemist responsible for producing the oils revealed on Thursday that the Dutch health ministry had granted a six month reprieve which allows for his company, Transvaal Pharmacy, to prescribe the oils to UK residents.
The cannabis oils have revolutionised the treatment of drug resistant epilepsy and has led to children who formerly suffered hundreds of seizures daily to go long periods of time seizure free.
Murray Gray, 8, from East Craigs suffers from Myoclonic astatic epilepsy, also known as Doose syndrome, which is drug resistant.
He relies on Bedrocan oils to remain seizure free.
Without the oils, Murray can experience hundreds of seizures a day and this ultimately leads to him spending most of his time in hospital in a vegetative state, having to be fed through tubes.
Murray’s mother, Karen Gray, says that with the oils he lives a mostly normal life attending school, playing games and being a typical young boy full of life with a mostly invisible illness.
Karen said: “We are overjoyed at this announcement today. These oils are essential to Murray living a healthy life.
“Prior to this announcement, the UK government was saying that we must try domestic alternatives. But he would have had to take double the amount and that would cost us twice as much with the chance it may not be effective. Bedrocan oils keep Murray seizure free and you don't mess with medicine if it works.
“We can now refocus our efforts on finding a permanent solution to the issue as well as to pressure the Scottish government into supporting parents who pay over £1,000 a month for life saving treatments out of their own pockets.”
The mother of three was forced to turn to illegal practices in smuggling vital Bedrocan oils across the Channel from the Netherlands to save her son’s life in 2018 - something that was documented in a BBC documentary.
This was after the NHS Scotland admitted that there was not much that they could do for her son.
However a company in Glasgow was eventually able to secure Home Office approval to start importing Bedrocan oils but this came at a severe cost to families in Scotland.
At the present moment parents are only able to get a prescription for Bedica or Bedrolite through private clinicians.
It is understood that the NHS in both Scotland and England are unable to provide a prescription as the British Pediatric Neurology Association will not back the prescription of oils containing THC for the treatment of drug resistant epilepsy.
Leaving families thousands out of pocket.
Transvaal Pharmacy said: “We can confirm that the Dutch Health Ministry has given Transvaal Pharmacy permission to continue to supply prescriptions to residents of the UK for the next six months.”
It is understood that the UK health department is preparing a statement at the moment and will publish it as soon as possible.
The Scottish government has also been contacted for comment.