The parents of a four-year-old girl from Frome in Somerset plead for access to medicinal cannabis from the NHS. Clover, the young girl, has a seizure disorder cured by medical marijuana.

Clover was diagnosed with Aicardi Syndrome when she was three. The rare genetic neurological disorder causes her to have hundreds of seizures a week. Her parents, Spencer and Emily, were completely overwhelmed trying to care for her with frontline medications. Aicardi Syndrome causes epilepsy that is difficult to control, and no medication seemed to make a difference. When Clover’s number of seizures started increasing, Spencer and Emily knew they had to try something different.

The couple procured a private prescription for cannabis oil through the help of family and friends. Medicinal cannabis reduced Clover’s seizures by 90% within the first three months. “After she started the prescription, we got our lives back; we were able to go out and do things rather than watching, monitoring, and waiting for the next seizure,” Emily told BBC News. “It was freedom for our family.”

The potentially life-saving effects of medicinal marijuana are amazing, but the cost of the private prescription is difficult for the family to keep up with. It costs nearly £1,000 a month for a doctor to evaluate Clover’s health and send the prescription to a Scottish pharmacy. The cannabis flower is then imported from Holland to make the cannabis oil. None of this would be necessary if the NHS approved medicinal marijuana. “We are fortunate to live in a tight-knit community; our family and friends pay about 50% of the monthly bill,” Emily said. “It is enough pressure to have a disabled child, but having to pay for a prescription that keeps them well, it is just too much.”

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Cannabis oil was legalized for medical use in the UK in 2018 but can only be prescribed by a small group of specialized doctors. This results in very few people routinely being prescribed medical marijuana by the NHS. A spokesperson for the Department for Health & Social Care explained to BBC News, “In 2018, we changed the law to allow specialist doctors to prescribe cannabis-based products, where clinically appropriate, making it easier to research them. We are taking an evidence-based approach to unlicensed cannabis-based treatments to ensure they are proven safe and effective before they can be considered for roll out on the NHS more widely.”

In theory, this practice makes sense, but in practice, patients like Clover are suffering without proper access to life-changing treatment. A seizure could be fatal for Clover, and cannabis oil is the one thing that seems to keep seizures at bay. “Seizures are extremely powerful, frightening, and dangerous, and the risk to her is monumental,” Emily asserted, “If we don’t have the medication that keeps those seizures at bay, then goodness knows what would happen.”

The challenges in accessing Clover’s medication have led Spencer and Emily to make a plea to the NHS to loosen their regulations surrounding medical marijuana. Other countries like the United States have begun widely legalizing marijuana after designating it as a medical substance for many years. Whether the NHS will follow this pattern is unclear.