Relief for family that pleaded: "Don't make our children go cold turkey!"
Parents of children prescribed medicinal cannabis for severe epilepsy had feared they'd lose access to their life-saving medication.
Last updated 8th Jul 2022
It's after they were told MHRA had removed a compassionate licence for the importation of Celixir20. It's whole plant cannabis product which is currently being prescribed to around 30 children with treatment-resistant epilepsy.
But following our coverage today we have been informed patients will still be able to get access to the medication. Dr Laura Squire, MHRA Chief Healthcare, Quality and Access Officer told us: “We recognise the importance of these cannabis oil products for children with severe forms of epilepsy. That is why we are enabling continued patient access to them by accepting applications to import. No parent should have cause for concern about ongoing supplies”
There is currently no other product on the market which is similar in strength and chemovar profile as Celixir20, which contains 20:1 CBD to THC.
Bailey from Cardiff is 19 and has a rare form of epilepsy, he used to have around 200 seizures a day. He's been on medicinal cannabis for 3 years and it's transformed his life. Medicinal cannabis was legalised in 2018 by the then Home Office minister Sajid Javid but in that time only three prescriptions have been granted on the NHS. Bailey's parents have been fundraising to cover the cost of private prescriptions which can be up to £2,000 a month. It has taken its toll financially on the family - with the pandemic and cost of living crisis affecting their ability to fundraise.
His mum Rachel Rankmore was contacted this afternoon by Matt Hughes of MedCan of the MHRA decision and is feeling hugely relieved. Rachel says: " Bailey's medication will continue for six months. It gives us a reprieve until we can sort something out and hopefully push on for an NHS prescription because we will only be faced with this situation again if we run out of funds. Our children need to be kept safe but at the moment we are elated that we can keep Bailey safe and he can enjoy the life he has been having on this medication.
Medicinal Cannabis
Bailey enjoying gaming at arcade
"The summer will be a good time for him and for us as a family. The cloud still remains over our heads unfortunately but onwards and upwards we are going to push through and prepare for every eventuality and keep fighting on. "
Our initial interview with Rachel Rankmore which you can watch below highlighted her concerns about drug access.