Edinburgh boy denied life saving cannabis oil because of Brexit
A mother has accused both the UK and Scottish Governments of not doing enough to help save the life of her son who suffers from a rare form of epilepsy.
Karen Gray, 46, from East Craigs, is mother to Murray, 8, who suffers from Myoclonic astatic epilepsy, also known as Doose syndrome, which is drug resistant.
Murray relies on Bedrolite and Bedica oils, a special cannabis oil, that is produced in the Netherlands as treatment for his rare condition.
But Karen has been informed that the drug will no longer be made available post Brexit and she has been asked to find alternative treatments for her son - something she says is impossible in the current UK market and could leave Murray fighting for his life.
Without the oils, Murray experienced hundreds of seizures a day and spent most of his time in hospital in a vegetative state, having to be fed through tubes.
Karen said: “Before the oils, I was constantly watching Murray and would never have taken my eyes off him due to his seizures. Over a 15 month period he was in hospital for 240 days. He couldn’t communicate, it was horrible. But with the treatment he lives a mostly normal life, going to school and playing, it is almost an invisible illness.”
Two years ago the mother-of-three was forced to turn smuggling the vital oils across the Channel to save her son’s life after NHS Scotland admitted there was not much else they could do - her journey was covered in a BBC documentary.
But a company in Glasgow was eventually able to secure Home Office approval to start importing the oils although this came at a severe cost to families in Scotland.
Karen added: “Brexit means that we cannot have access because the Dutch government won't honour a UK prescription but there has to be a way and a will. Previously Jeane Freeman said they couldn’t help us with funding but now we are facing a complete cut off.
“They are saying there are other alternatives but nothing in the UK is as good as the dutch oils. You would have 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.”
A UK government spokesperson said: “We sympathise with patients dealing with challenging conditions and we are working urgently with the Dutch government to find a solution which will enable patients to access the medications they need.”
A Scottish government spokesperson said: “We have great sympathy with Ms Gray and Murray for the situation they have been placed in as a result of leaving the EU and the impact of the UK Government’s post-Brexit agreements with European partners. It is a completely unacceptable situation, which has come as a result of EU member states no longer being able to dispense UK prescriptions, and would not be happening at all if it were not for Brexit.
“Scottish Government officials are working closely with the UK Government, which has overall responsibility for the regulation and supply of medicine, to try and find lawful and sustainable solutions for those affected.”