The benefits of cannabis seen in children suffering severe treatment resistant epilepsy spearheaded the change in law of 2018 to allow cannabis to be prescribed.Through the efforts of families working collectively in early 2019, 20 children were prescribed cannabis privately and cannabis medicines dispensed by independent pharmacies before any cannabis clinics existed. Through their continued campaigning and advocacy it opened the eyes to the general public and helped progress the emerging private sector attracting investment.

Today four years on there are little over 50 prescriptions for children and very few effective products available. We have seen only three clinicians prescribe unlicensed cannabis medicines over the four years, with one retiring, the remaining two have their books closed to new patients. In contrast we have seen a slow but steady increase in prescribing for adults, with over 100 clinicians and an estimated 22,000 adult patients prescribed.

Severe treatment resistant epilepsy is a rare disease, the cohort of patients makes up only 1% of all the diseases that cannabis can treat, yet it’s one of very few which is life threatening. Since the change in law of 2018, 4800 people diagnosed with epilepsy will have died, many of which are children. There is an unmet clinical need with severe lack of funding for research in epilepsy and very few new medications coming to market, access to cannabis can literally mean life or death.

The UK private sector as recently reported by cannabis health magazine have been doing families a disservice by not seeking to fund clinical trials.

“NHS access to full extract cannabis medicines will only become available through clinical trials of products through initiatives like the Innovative Licensing and Access Pathway (ILAP)  which is designed to support innovative approaches to the ‘safe, timely and efficient development of medicines’. It is open to both commercial and non-commercial developers and aims to speed up the time it takes to get a medicine to market in order to improve patient access. NIHR has also committed an amount of funding to innovation they will subsidise clinical trials which they think have longevity. The manufacturers, the people who are making the drugs, are not doing the research that the clinical communities are calling for.”

Although generally there is a large volume of data across the world that supports cannabis in being safe and effective, to date, all privately prescribed cannabis medicines are unlicensed and very few come with data in the product to support their use. Neurologists don’t have the required information to make the most informed prescribing decisions which has been a consistent barrier to progress.

Families have spoken of feeling abandoned with little support, that focus from industry has shifted to the more profitable and easier routes to anxiety and pain. Very few clinics are seeking to bring in paediatric prescribers and very few producers looking towards clinical trials. To expand private access and ultimately population wide prescribing through the NHS much needs to change.

For many children it’s already too late, sadly we have seen children pass away and even recently due to supply chain issues children return to many hundreds of seizures per day with no alternative options available. We are still in a situation that families face uncertainty this Christmas as to whether the oil their children are prescribed will continue from January 2023 and many thousands more left to seek treatment from illicit sources.