Despite the legalisation of cannabis based medicinal products (CBMPs) in the UK in November 2018, today there remains a scarcity of NHS prescriptions, and many patients continue to face unsustainable financial costs to acquire their medicines. Following on from our previous quantitative study highlighting the effectiveness of CBMPs to treat severe intractable childhood-onset epilepsy, for the present study, we used a narrative, open-ended approach to interview parents/carers of these patients. 11 families were interviewed to understand their current situation in more depth, and to contextualise the previous findings. Although these families have found CBMPs to be the most effective treatment for their child’s condition, access to these medicines remains severely restricted, causing serious challenges in their day-to-day life.

Participants discussed a broad range of issues associated with medical cannabis. These included the regulation and policy surrounding medical cannabis, the anger and desperation related to these policies, and the benefits and harms of it. Evidently, the benefits of medical cannabis for these patients far outweigh any associated risks. Many of the issues raised in our study go beyond the science of medical cannabis per se. Rather, they are political issues, related to the wider issue of trust and power in society, and associated challenges of the doctor and patient relationship. The findings highlight the importance of including patients in decision-making about their medical plans and the value that should be given to their reported outcomes and wishes. We conclude by offering implications for further research and for policy making so that these families, and others like them, can finally receive the medications they so urgently require without crippling financial costs.