Brexit will cut off access to medical cannabis for my epileptic son – now I fear for his life

Access to medicinal cannabis products are blocked at every turn. Suffering families never imagined their situation could get worse. Sadly, they were wrong

Six-year-old Alfie Dingley, his parents Drew Dingley and Hannah Deacon and actor Sir Patrick Stewart (left) walk up Whitehall in London before handing in a petition to Number 10 Downing Street asking for Alfie to be given medicinal cannabis to treat his epilepsy (Stefan Rousseau/PA Images)

After many years of determined campaigning, on 19 June 2018, my son Alfie became the first person in the UK to be issued with a medical cannabis prescription on the NHS.

This was a monumental moment. It gave thousands of families across the nation hope that their children, like Alfie, might finally be able to access the life changing medicines they so desperately need.  

Yet two years on from this historic law change, this could not be further from the truth.

Access to medicinal cannabis products are blocked at every turn, so much so, that many families are forced to pay upwards of £2,500 each month for private prescriptions. All so they can give their children the quality of life they rightfully deserve.

These suffering families never imagined their situation could get worse. Sadly, they were wrong.  

On 17 December, a letter was sent out by the Department of Health, which informed us that medicinal cannabis prescriptions issued in the UK, whether privately or on the NHS, will no longer be lawfully dispensed in EU member states due to the end of the Brexit transition period.

This was the worst Christmas present my family and the many others affected could have ever possibly received. Sadly, this is just another development in a long line of events which show the medicinal cannabis policy of 2018 has completely failed.

This bombshell news, delivered not to the families directly, but to prescribing doctors, told us that medical cannabis supplies from the Netherlands would be terminated from 1 January 2021.

To put this into context, with just two weeks’ notice we were hit with the possibility of losing access to the one treatment which has drastically improved the lives of over 40 severely epileptic children, including my own.  

This was a completely debilitating blow for parents who are already struggling to care for extremely sick children. Alfie has had an NHS prescription for cannabis medicines for two and a half years – surely this can’t just be taken away from him?

Getting a prescription is hard enough in the UK as it is. The restrictive guidance of senior medical bodies like the British Paediatric Neurology Association (BPNA) means clinicians are not prescribing. Then on top of those challenges the Department of Health put Brexit barriers up

I understand the challenge of balancing public health needs and Brexit is tremendous, but for the government to inform us just before the end of the transition period that these medical prescriptions have been annulled is a blatant underestimation of what they mean to our children.

Medicinal cannabis products are incredibly complex, and they cannot be interchanged easily. Being told to withdraw our children’s treatment does not just mean picking something else up from the pharmacist instead, it is incredibly dangerous and risks the hospitalisation and even death of our children.  

Brexit was billed with endless promises of economic prosperity and independence from the confines of the EU. How can the government claim this to be true, when we cannot even protect the lives of our most vulnerable, when all it takes is ensuring the supply of these completely legal drugs?

Time after time, I and many other families have made desperate pleas to the government for urgent assistance – these have always been ignored.  

Now all we can do is remain optimistic, that in 2021 our ministers will finally deliver adequate access to medicinal cannabis on the NHS. 

Hannah Deacon is a campaigner and founder of Maple Tree Consultancy