Healthcare news

Campaign group that helped secure cannabis oil licence for Co Down girl backs west Belfast family

Sophia Gibson at home in Newtownards with her mum Danielle. The seven-year-old has a long-term licence for cannabis oil to manage her epilepsy. Picture by Hugh Russell
Seanín Graham

A CAMPAIGN group that was 'instrumental' in getting a cannabis oil licence for a Co Down girl has criticised the new application process - claiming it is weighted unfairly against some families.

End Our Pain was praised by Daneille Davis from Newtownards for its "guidance and support" in securing the long-term licence for her seven-year-old daughter Sophia Gibson.

The little girl was left fighting for her life in the Royal Hospital for Sick Children a fortnight ago after suffering a catastrophic seizure. Within days, she was granted access to medicinal cannabis after an 18-month battle by her family and campaigners and is now travelling twice-daily to hospital to receive it.

The family hope eventually to be able to administer the drug at home.

"Without End Our Pain, we would never have got Sophia's licence, they helped us change her life," Ms Davis said.

Peter Carroll, who heads up the English-based group, said he intends to "pile on the pressure" on the Home Office on behalf of Deaglan Kelly after his parents were informed by the Belfast trust that an application will not be made to an expert panel in London for a licence.

"I don't think cannabis oil should be the medicine of last resort as part of this application process. There are 15 anti-epileptic drugs - does that mean all 15 should be tried before a request can be made for Deaglan?" he said.

"Also, preference seems to be given to families who have travelled abroad and received the treatment. This is unfair for poorer families and causes a huge amount of stress for parents of sick children."

Mr Carroll said he accepted the medical profession is "understandably nervous" about the "profound changes" being brought by the British government in such a short timeframe.

"This panel was set up in haste and while the intentions are good it has some flaws... there should be a greater degree of freedom around accessing this drug."

Last week the official body which advises the British government on drugs said that doctors should be allowed to prescribe cannabis-based drugs for some medical conditions.

The Advisory Council on the Misuse of Drugs said there is "evidence of medicinal benefit of some of these products in certain circumstances" and recommended they should be able to be prescribed as long as they meet appropriate safety standards.

The government must now agree on a definition for these products.

The council recommended that clinical trials be carried out urgently to improve understanding of medicinal cannabis products, as well as their safety and effectiveness.

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