Bedrocan Supply Threat – An Open Letter from National Epilepsy Training

We recently wrote a post on how the threat of a halt of prescriptions for cannabis-based medication, Bedrocan, is going to affect 42 families within the UK. 

One of the 42 children affected is one of our own clients here at National Epilepsy Training. 

Our client is only 12 years old, and can have up to 200 seizures per day. However, since taking Bedrocan oil this has been reduced to around 5 seizures per day and has been as little as 1 per day. This is just one case that highlights how effective cannabis-medications can be and how crucial they are to the families who have seen such dramatic decreases in seizure activity in their children. 

The implications of a disruption, or complete halt, to the supply chain is clear; anxiety for the 42 families with children who are reliant on the medication for the safety of their children and, of course, an inevitable increase in seizures if they are unable to access the medication. Not to mention the financial implications for these families, many of which are already forced to pay for the medication that should be available from the NHS. Finally, the quality of life for the child must also be considered, a reduction from 200 to 5 seizures in a day can have a huge impact on a child’s life and wellbeing. 

A letter penned by a concerned parent to the Young Epilepsy Charity outlines how many families (with the exception of just 3 who have NHS prescriptions) are having to pay for the medication themselves. She states: 

“The fact is that since 2018 only 3 NHS prescriptions for the whole plant extract type of medical cannabis that is life transforming for these children with severe epilepsy have been issued and the other families have been, and continue to be, forced to pay privately for it. To do that, they have to fundraise, and as you know fundraising is all but totally impossible in these Covid times. And irrespective of the particular difficulties due to Covid, should they have to pay for a medicine that is now legal here?”

“The bottom line is that one of these families is going to run out of money, so

will run out of medicine and have a severely ill child be admitted to Intensive

Care and possible die. That will be a catastrophe.”

Following the initial announcement, there is some good news in the form of an extension of supply for Bedrocan up until the 1st of July 2021. Of course, this is only a small victory and only gives the families affected some immediate relief, but concerns remain as to what will happen after this date. The hope is that during this time a permanent solution can be agreed that will allow the supply chain to continue as normal and prescriptions to remain in place. 

You can see the full letter below from Jeanette Howe, Head of Pharmacy at the Department of Health and Social Care:

The message here is clear and resounding, we need to offer these 42 families a permanent solution that allows them continued and unrestricted access to this life-saving medication. To do anything otherwise would surely result in nothing but catastrophe and heartbreak that is unimaginable in modern society. We’re talking about the lives of children who need not suffer needlessly from seizures which could be avoided with the use of cannabis-based medication, such as Bedrocan.

 National Epilepsy Training can help

If you are likely to be affected by the Bedrocan supply threat, and would like some guidance and advice, please contact us on 01706 373075 or email admin@nationalepielpsytraining.co.uk.