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UK: NI: Sophia Gibson gets medicinal cannabis licence in 'life saving' UK landmark decision, says mum

Shauna Corr

Belfast Live

Saturday 14 Jul 2018

She's the first child to be awarded a prescription by a new UK expert panel

A Co Down girl who ended up on life support while waiting for medicinal cannabis approval today got the news her family has been waiting for.

In a landmark decision, six-year-old Sophia Gibson is the first child in the UK to be granted a licence for treatment with the drug through a new expert panel set up to consider applications.

The six-year-old suffers from genetic condition Dravet Syndrome, which causes frequent and dangerous seizures that could kill her.

But following treatment with medicinal cannabis in Holland they reduced by 80%. Denied the drug back in Northern Ireland, the Newtownards girl ended up in intensive care at Royal Belfast Hospital for Sick Children's following an hour-long seizure on Tuesday.

Sophia's mum Danielle Davis said: "This decision is a life changer and a life saver for Sophia.

"But no family should have to fight this hard, for so long, for something that so obviously has a benefit. The fight has been exhausting but the relief is immense.

"We would like to thank each and every person who supported Sophia and our family through this distressing journey. The years of battling have finally paid off. As of today, the 13 July 2018, Sophia has got a long-term licence for the use of Bedrocan whole plant medical cannabis oils, to be prescribed through the NHS by her UK doctors.

"We hope that following Sophia’s journey other children and adults across the UK can access the same treatment without having to uproot their lives to travel or move abroad. Cannabis should be rescheduled and doctors should be able to prescribe it.

"We can't thank everyone individually but we would particularly like to thank our MP Jim Shannon, Professor Mike Barnes and Peter Carroll from the End Our Pain Campaign that have supported us and helped us so much over the past couple of months.

"Now Sophia can have her medicine her life will begin to improve and we can enjoy life as a family and look forward to living a more normal family life.

We hope that the decision made today will pave the way for the many others who should have access to medical cannabis. We will continue to work to make it accessible for others and educate people on the use of medicinal cannabis so there isn't a stigma or misconception surrounding it anymore."

Peter Carroll from End Our Pain has helped with the campaign for Sophia's prescription. He said the decision was made around 2.30pm today (Friday, July 13).

He said: "The access the medical cannabis has been granted. We are really thrilled.

"The new expert panel made the decision. I believe they had two expert submissions. One from Professor Mike Barnes and another from the clinicians in the local Trust.

"The board made the decision about whether it's clinically justifiable to recommend that it's used. Then I think you have to have a possession licence issued by a Northern Ireland authority.

"The application was put in Friday last week. Professor Mike Barnes flew over and assessed Sophia and in his expert knowledge of medical cannabis, he submitted an application. He's based in Newcastle.

"It's a great day and a landmark. It's the first UK licence through this new panel. It’s been an honour to support this family.

"Their dignity under the most extreme anxiety over such a period has been remarkable. Our work goes on to secure the rescheduling of cannabis. Then, there will be no need for a panel and the medical benefits of cannabis should be widely available under prescription."

Sir Mike Penning, who chairs the new all-parliamentary group on medicinal cannabis said he is "thrilled that Sophia Gibson has been granted this landmark licence to access medical cannabis".

He added: "I hope her success offers hope to the many hundreds who also want access. This demonstrates Government's actual commitment to ensuring access for patients. But the panel still needs reform if other families are to benefit. The emphasis on having to demonstrate that medical cannabis has worked is highly restrictive and unfair to families who simply cannot make that arduous journey abroad.

"As it stands, the panel process implies that medical cannabis should be the medicine of last resort when in fact it should be the medicine of first or second resort for many.

"I speak on behalf of the APPG on Medical Cannabis under Prescription when I say that this is a massive achievement for Sophia’s family and we are delighted for them.

"Our priority is now rescheduling medical cannabis, so families don’t have to use the flawed panel and doctors can prescribe medical cannabis for patients that need it. We will not stop until all those who need medical cannabis can access it."

A Northern Ireland Department of Health spokesperson said: "We can confirm a licence for medicinal use of cannabis has been issued in line with a recommendation from the expert panel."


https://www.belfastlive.co.uk/news/sophia-gibson-gets-medicinal-cannabis-14906138

 

 

 

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