Thanks to the tireless campaigning of a group of ‘epilepsy mothers’, lead by Hannah Deacon, the mother of Alfie Dingley, and her consultant, neurologist Professor Mike Barnes, a change in the law in 2018 allowed the prescription of medical cannabis for children with certain rare types of epilepsy, those in chronic pain and for those with MS. But because so few doctors understand anything about medical cannabis, and thanks to the draconian advice from the Royal College of Physicians and NHS England, only three NHS prescriptions have been issued for medical cannabis for epilepsy since 2018.
Private prescriptions are available (check in to the Medical Cannabis Clinicians Society to find out more) and supplies can be obtained from Holland where most of the medical cannabis research has been carried out – albeit at a cost often exceeding £2,000 a month.
However, these supplies are now to be cut off as a result of us leaving Europe. On the 15th December an email was sent from the Department of Health to pharmacy suppliers around the country – not to the end users of the compounds, be it noted – to say that, since the UK has left Europe, as from 31st December ‘prescriptions issued in the UK can no longer be lawfully dispensed in an EU member state’. Pharmacies were told to advise on ‘alternative prescriptions which would be clinically appropriate to switch patients on to’.
However, cannabis is an enormously complex plant – there are 147 different cannabinoids in each plant along with a range of terpenes which create many different and very specific medical properties. Often only one combination will work for complex issues, such as the rarer forms of childhood epilepsy such as Alfie’s. So, for example, the specific compound, Bedrocan, that proved successful for Alfie and was developed in the Netherlands, is the only compound which has actually controlled his 300 daily seizures. There is no alternative that works for him.
Not only is this truncation of supplies a disaster for the users of medical cannabis sourced in Holland, but they were given no notice that their access was about to cease. Hannah has already written to Boris Johnson but the fear must be that, with COVID raging through the land, it may be hard to push the fate of the small group of epileptic children who, Professor Barnes warns, could die if they cannot access their medication, to the top of the government’s agenda. Although, the press are doing their best to raise the issue – a lengthy slot on the Today programme this morning and coverage in all the broadsheets.
How many other unanticipated consequences of Brexit will emerge over the next few months?
(For a number of previous posts on the use of medical cannabis, ‘search’ for cannabis in this blog.)
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