Medical cannabis prescriptions have received approval for two boys with epilepsy. They are from the United Kingdom and their names are Billy Caldwell and Alfie Dingley. The boys have a rare form of seizure or epilepsy. For years, the parents of these two boys have been advocating for change to the UK legislation. Let’s take a closer look at both of them; starting first with Alfie Dingley.
Meet Alfey Dingley
Hannah Deacon is the mother of Alfie Dingley. Alfie is only six years old. His father is Drew Dingley. It is because of medical cannabis treatment that Alfie has been living a normal life without seizures. However, there are other UK families that are experiencing the same thing, but don’t yet have the cannabis license to get treatment for their loved ones.
These families have put in an application for a cannabis license using an approval panel that is temporary, but it has been flatly refused by their physicians. A public campaign was coordinated by Alfie’s mother so she could access the cannabis extract to help her son continue to live this normal lifestyle without epilepsy episodes. Hannah Deacon now is an ambassador for “End Our Pain,” which is a cannabis campaign group located in the United Kingdom.
Hannah Deacon has been doing the coordination and advocate work with sixteen families like herself, trying to get access to cannabis for their children who are going through epileptic episodes. In two of the sixteen cases, families received flat refusals from their physicians as they requested a chance to try this treatment. The families who were rejected by the approval panel, even though the pediatricians gave their support.
These families were given other advice, telling them to try medication that was not licensed in the United Kingdom. According to Ms. Deacon, Alfie’s mother, it has become frustrating for her and those families that she is trying to help. They have tried all the available resources; only to be told that their children are not eligible. For that reason, the kids are getting sicker and sicker.
Alfie Dingley uses a medical cannabis treatment that is labeled as “whole plant extract.” It has multiple cannabinoids and terpenes. If you were to ask many medical cannabis patients like Alfie, they would tell you about the numerous benefits that come from the extracts. Alfie and his parents put in their petition, requesting that Alfie continue to receive medical cannabis treatment for his epilepsy.
As a result, physicians are concerned that Alfie’s petition approval may pose issues for them legally. The doctors are concerned that if medical cannabis is prescribed privately to patients like Alfie, it is susceptible to side effects, whether mild or not. With no licensing, doctors are running scared, even though medical cannabis is not known to have side effects.
Many doctors would prefer to use a registered or licensed medical trial so as to protect their medical practice and the patient. This, though, would potentially limit numbers and it would increase cost. Some doctors look to expand awareness among physicians, hoping to make the right information mainstream over time.
And so it is clear that UK families will have a major barrier to get their medical cannabis prescription and the barrier is the physicians with their unsubstantiated concerns that are not well founded. It was a neurologist that assisted Alfie and his parents to secure their medical cannabis prescription without the fight, but what about other families like Alfie? Even though, there is no evidence of side effect, licensing for medical cannabis is still being controlled by the government.