January 2021 saw the UK leave the EU; this move will soon mean families will no longer have access to medicinal cannabis to support children with chronic epilepsy. Lorne Gillies investigates the impact of Brexit and continued stigma around a vital medicine.
Brexit has had a significant impact on all our lives, and the rollout is impacting people, families, businesses and more in different ways. For several families with children who have refractory epilepsy, which causes hundreds of daily seizures, Brexit is set to be an additional hurdle to obtaining vital medicinal cannabis.
A new struggle in a long fight, the obstacles faced to obtain a prescription for medicinal cannabis may now be even more prevalent.
Outside the bubble, many of us rejoiced in 2018 when we learned that medicinal cannabis – Bedrolite is an example of a medical cannabis product – was prescribed on the NHS to six-year-old Alfie Dingley, who lives with refractory epilepsy causing up to 150 seizures a week.
However, despite the law change in November 2018, which means clinicians on the specialist register could legally prescribe, many are still fighting for a prescription on the NHS, or spending £2,500 a month on private medication.
“This is a legal medicine, why should I have an NHS prescription but nobody else? It is not fair,” expresses Alfie’s mother, Hannah Deacon, who is actively campaigning for medicinal cannabis to be available on the NHS. “These families have proven it helps their children but their doctors who work for the NHS say they are not allowed to prescribe it.”
Alongside the challenges to obtain prescriptions for families across the UK, due to Brexit, the UK Government gave just two weeks’ notice that access to Bedrolite – available from The Netherlands – would end.
Hannah continues: “There has been a complete lack of empathy or understanding around what it could be like to be a parent or carer with someone with refractory epilepsy, which is very, very hard on a daily basis.
“I think there is still a huge amount of stigma around the fact that it is cannabis. But, for children like Alfie it is a life changer.”
Prior to receiving Alfie’s prescription in 2018, the family relocated to The Netherlands for five months; and the impact medicinal cannabis had on Alfie’s progression was evident. From being restrained and injected with medication, finding simple tasks hard to follow, to learning how to ride a bike in a couple of days and living for long periods of time seizure free.
“What we have done with medicinal cannabis is given him a quality of life. When the seizure activity calmed down his brain started to work properly.”
Despite the evident benefits, there is still a taboo around cannabis. Charities welcomed the move for medicinal cannabis in 2018, however, the National Institute for Health and Care Excellence (NICE) were against the move due to the psychoactive ingredient found in cannabis, THC (delta-9-tetrahydrocannabinol).
Hannah, and many private medical professionals, argue that medicinal cannabis, such as Bedrolite – which uses almost an entire cannabis plant for production – is a botanical and better than pharmaceutical products in many instances when treating epilepsy.
“Pharmaceuticals are brilliant for some things, but they are not great for other conditions and epilepsy, which is very severe. Pharmaceuticals alone don’t work for Alfie,” explains Hannah.
Medicinal cannabis comes from the marijuana plant, which features multiple compounds such as CBD and THC.
For children with severe epilepsy, they require both CBD and small doses of THC – but not enough that would illicit feelings of being high.
Hannah emphasises: “The only way that this medicine is going to become accepted is through education.”
There are many challenges for parents raising a child with severe epilepsy, plus people living with chronic conditions such as multiple sclerosis. Alongside the initial obstacles in place to receive a medicinal cannabis prescription on the NHS, the barriers are leading people to turn to private practice – spending thousands of pounds every month on critical medication – or purchasing cannabis on the street, unsure of dosages and strength. The news that Brexit could impact Alfie and other children’s supply is heartbreaking.
When asked for comment, a Department of Health and Social Care spokesperson said: “We have agreed a way forward with the Dutch Government on the supply of Bedrocan oil to UK patients, which will bring relief to the families who depend on these medicines.
“We are grateful to the Dutch Government for working with us closely and quickly on this solution, which will last until 1 July. We are exploring more permanent solutions to ensure people who need these treatments can continue to access them.”
While the interim measure is a move in the right direction and welcomed byHannah and other families, more work still needs to be done to ensure the safety of children like Alfie, and people who would see the benefits from a medicinal cannabis prescription. But, the tides are changing.
Hannah says positively: “Things are going to change, and patients will drive this. I have positivity that even though there are people trying to stop this, it is going to happen.”