Fife mother hopeful medicinal cannabis treatment become reality for epilepsy

Charlene Londra from Kirkcaldy was one of a group of parents from across the United Kingdom who took part in a march at Westminster to lobby MPs to increase access to what they say is a life-saving treatment. They marched under the Medcan Family Foundation banner, a patient advocacy group.

Medcan’s Matt Hughes said: “In 2019 NICE made clear that for children with severe forms of epilepsy these medications can be prescribed by the NHS. In many other countries, these treatments are used as standard in the fight against this debilitating condition – but red tape means the medicine is not reaching UK children. We urgently need the Government to step in.”

Charlene’s son Gino, now eight years old, was diagnosed with epilepsy at two weeks old. He has been taking private medicinal cannabis for three years, which she said has reduced his seizures by 80 per cent.

Despite medicinal cannabis being legal and the apparent success of the treatment, Charlene said NHS doctors are reluctant to issue prescriptions.

She said: “It’s been legal for five years, but no prescriptions have been given by the NHS in that time frame because of guidelines. Families have been paying privately to get medical cannabis. We got to a point three years ago where we had exhausted all options – we tried diet, we tried implants, nothing seemed to help.

“We started contacting families who were using medical cannabis. In that time the NHS had come up with its own medical cannabis but it isn’t as good as the private stuff, but Gino didn’t meet the criteria, so we were denied that as well. We were left with no more options.”

In Scotland, only three cannabis-based products have been licensed, Sativex, Nabilone and Epidyolex. Scotland’s Chief Pharmaceutical Officer said in 2021 that the majority of specialist doctors have concerns around “the safety and efficacy of cannabis based products for medicinal use (CBPMs), and the lack of robust evidence on their use, particularly the long-term side effects.”

With NHS prescriptions unlikely, families face high costs for help. Charlene paid £200 for a private consultation which led to Gino getting access to the treatment. She said that it had reduced Gino’s seizures within a week – according to Charlene, they were one of the lucky ones as many clinicians closed their books to prescriptions.

She said: “We were one of the last families to get a prescription. There were only two clinicians that would actually prescribe to paediatric children.”

The family now face a monthly bill of around £1600 a month to maintain the treatment, and, this will increase as Gino grows.

Locally, Charlene has met with Neale Hanvey, MP for Kirkcaldy and Cowdenbeath, but she said while talks were positive, there still needs to be a push towards action being taken.

She added: “There’s only so much they can do, we need some action.”