Need for research

Published: June 14 2018
Last updated: September 29 2022

Epilepsy Action chief executive Philip Lee spoke to Metro Online about Billy Caldwell’s fight to get epilepsy treatment and the need for research into medicinal cannabis. Here is what he had to say.

Mum Charlotte Caldwell has gone to great lengths – quite literally – to get life-saving treatment for her son Billy. Sadly, she is not alone in her race against time to secure medicinal cannabis her child, which could make the difference between life and death. Only recently there has been much in the press about Alfie Dingley, whose mum is fighting to get medicinal cannabis to help manage his very rare form of epilepsy. Every week we see stories hit the headlines about parents who are taking risks to save their children’s lives – not just for those with epilepsy but many other health conditions.

It’s heart-breaking to see parents having to go to such desperate lengths to get treatment for their children and face the consequences of their actions. Why should they have to bear the burden of watching their child suffer unnecessarily? Knowing medicinal cannabis is available in other countries but not currently legal in the UK will only be adding to their pain and frustration.

Parents of children with hard-to-control epilepsy seek out these other treatments because it is a last resort for them. Epilepsy is about so much more than having seizures. For some, the side-effects from epilepsy medicines can be debilitating and have a major impact on their child’s learning and development. If a child’s epilepsy simply does not respond to medicines and their seizures get even worse, it’s only understandable that parents will look for solutions elsewhere – whatever the cost.

The debate about medicinal cannabis is complicated and research is the only way we can find the answers. Recently Epilepsy Action looked again at our positions on cannabis in light of new research and heart-breaking stories such as Billy and Alfie’s. Cannabis is a complex plant made up of over 100 active components, one of which is CBD. It is important to know what we’re talking about when we say CBD-based oils or cannabis-based treatment. The cannabis oil that Billy and Alfie are trying to access is different from the CBD-based oil that is becoming common in health shops across the UK. As well as CBD, a non-psychoactive compound present in the cannabis plant, the cannabis oil being sought by the parents of Billy and Alfie also contains THC. This is the compound that is associated with feeling ‘high’ and which is currently illegal in the UK. In this case, we believe Billy was using whole-plant cannabis oil containing THC and a higher level of CBD produced by a pharmaceutical grade supplier in Canada. This is not street-bought cannabis in a roll-up, but a pharmaceutical-grade treatment. It is not, however, licenced as a medicine in the UK.

People with epilepsy deserve access to treatments that will give them the best quality of life. This is so they don’t have to face the kinds of challenges that are sadly all too real for children like Billy and Alfie, and their families. But alongside long-term research, there needs to be action – now. Shockingly, deaths in people with epilepsy have increased by 70% between 2001-14. It’s in everyone’s interest to reduce that number. Epilepsy Action urges the Home Secretary to treat cases like Billy and Alfie’s with the appropriate care, consideration and sympathy they deserve.

Cannabis-based treatments are not a magic bullet – far from it. For the more general treatment of epilepsy, at this time Epilepsy Action does not know whether or not high-THC treatments should be used. They are unlicensed and there is a serious lack of evidence about whether high-THC treatments are safe or effective in treating epilepsy. There is, however, evidence that THC can make seizures worse and cause other serious side-effects, such as psychosis.

Epilepsy Action urges the government and pharmaceutical companies to work together to promote more high-quality research into this emerging possible treatment. There needs to be adequately supported and funded supervised clinical trials into this and other treatments for hard-to-control epilepsies. But for the parents of Billy, Alfie and other children with rare and treatment-resistant epilepsies, there is no time to wait. They have already waited long enough.