Edinburgh family's joy as life saving cannabis oil to be produced in Scotland
Karen Gray, 46, from East Craigs, is mother to Murray, eight, who suffers from Myoclonic astatic epilepsy, also known as Doose syndrome, which is drug resistant.
She was overjoyed by an announcement from Dutch firm Transvaal Apotheek that said it was working with Scottish company Target Healthcare to produce the cannabis oil product.
Murray relies on Bedrolite and Bedica oils, special cannabis oil, that at the moment are produced solely in the Netherlands as treatment for his rare condition.
The family had been concerned after Brexit meant that the oils could not be imported for UK users.
Without the oils Murray was left in a vegetative state in hospital. With them he leads a mostly normal life and enjoys going to school and playing with friends.
Fortunately for the family the UK Department for Health and Social Care managed to reach an agreement until June that would allow for the imports to continue.
But now the medication is set to be produced by Target Healthcare - the previous trusted distributor of Murray’s oils.
Karen said: “We are totally delighted to hear that the oil for Murray will be made by a trusted company in Scotland. It is really good news as Target Healthcare has always been brilliant.
“This means we are going to have a supply guaranteed, as the fear of losing our supply due to Brexit was intense.
“There is still no word on getting support and still no funding from NHS Scotland or the UK government. This is something we will continue to fight for. More and more children are using these oils with at least 42 in the UK. There are three children getting prescriptions for their oil paid for and we demand that this be the case for all of the children.”
The Scottish Government has continued to deny financial assistance to families on this basis.
A Holyrood spokesperson said:“These are undoubtedly extremely difficult cases, which are distressing for patients and their families. However, it would be inappropriate for Ministers to intervene in decisions on the treatment or funding for individual patients, for which we must trust clinicians and the NHS.
“It is solely a decision for the patient, or the patient’s carer, whether or not to seek private treatment. Where they do so, they are responsible for paying any costs incurred. Our health system, the NHS, is a publicly funded service and it would not be appropriate to redirect that public funding from the health service in Scotland to private care.”
This decision has left families to accumulate thousands of pounds a month to afford treatment for their children.
Arwin Ramcharan, Transvaal Apotheek’s co-owner, said: “At the moment we are working with Target Healthcare and the relevant health departments.
“But, if everything goes to plan, then we think the product will be produced and available for use in the UK in July this year.”
Sam Mountney, senior policy and campaigners officer at charity Epilepsy Action, said: “We’ve been involved in discussions with the Department of Health and Social Care, along with affected families, around supplying oils in the UK post-Brexit.
“It's our understanding that these talks are on-going.”