Despite the high-profile government endorsement of whole-cannabis medicine five years ago that led to its legalisation on the NHS, patients and campaigners argue that they have been misled. The expectation was that unlicensed cannabis medicine, known to treat a wide breadth of conditions, would be freely prescribed by specialist doctors post-legalisation. However, less than five NHS patients have apparently received this medicine, leaving many to either pay out of pocket or forego its potentially lifesaving potential. The government’s position is clear: the safety of this medicine must be proven before it is widely disseminated.
Whole-cannabis medicine utilizes the entire cannabis plant, including THC, the psychoactive component that induces a high. The heralded legalisation allowed both NHS and private specialists to prescribe it if they believed their patients stood to benefit. Yet, campaigners argue that patients are being denied access because, either due to lack of knowledge or skepticism about its safety and benefits, doctors are hesitant to prescribe it. The medicine is not included on NHS trusts’ approved list and those that elect to employ it, cite a dearth of supportive evidence.
Full-scale medical trials, a necessary step to official licensure, present a challenge due to the high costs and array of chemical compounds inherent to the cannabis plant. Matters are further complicated by ethical concerns surrounding trials of whole plant cannabis aimed at children; such trials would likely necessitate patients to cease essential medications and take a placebo.
Funding this unlicensed medicine presents a significant hurdle when specialist doctors seek to prescribe it. They must plead with NHS England for an exception and individual case funding, a request almost uniformly rejected. Licensed cannabis drugs do indeed exist, yet none leverage the full plant properties. As an example, Epidiolex, a CBD-based medicine, can be prescribed for epilepsy but falls short in treating the full spectrum of epilepsy disorders.
Alfie Dingley, 11, has severe epilepsy and is the first patient to receive an NHS prescription for medical cannabis. His mother, Hannah Deacon, led the influential campaign that culminated in the legislation change of 2018. Previously, Alfie would travel to the Netherlands to legally obtain whole-plant cannabis oil. Today, he receives 13 bottles of Bedrolite monthly on an NHS prescription; without such aid, each bottle would cost £225.
Deacon openly credits the transformative impact of the treatment, stating that Alfie hasn’t had a seizure in three years.
Despite this, general access to medical cannabis remains fraught with difficulty. If the NHS declines to foot the bill, patients must turn to private prescriptions from specialist clinics, with more than 140,000 prescriptions issued between November 2018 and 2022. Parents of children in need of this treatment, but incapable of affording it, like ex-social worker Carly Ashton, are left feeling desperate and resentful. Her young daughter Esme, aged two-and-a-half, suffers from an exceptionally rare form of epilepsy affecting one in 600 children globally. For Carly, the reality is stark.
“If Esme’s condition can’t be managed, she might die from a sudden seizure,” she lays bare.
The DHSC asserts that licensed cannabis-based medicines can receive NHS funding, provided a stringent evidentiary threshold regarding their quality, safety, and effectiveness is met. Furthermore, any funding request rejection by an independent panel of experts has a hands-off approach by the government.
In Scotland, the funding decision falls upon health boards, and in Wales, the NHS considers meeting these costs when an NHS healthcare professional seeks to prescribe this medicine. While some may see hope in these differences, for those waiting, any change may come too late.