SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

Safety must come first as Government works towards making Cannabis medication accessible

In June, SUDEP Action wrote about the cannabis oil (CBD) scandal capturing the media and the need for policy makers to take the time to listen, to both the epilepsy and the bereaved communities, to understand the need for epilepsy to become an NHS priority.

A lot has happened since then, with the Government releasing the findings from the first part of their review into the use of cannabis as a medical treatment. The second part of the review, led by the Advisory Council on the Misuse of Drugs (ACMD) has also taken place, releasing their findings last week.

The Home Secretary announced in July, that cannabis derived medicinal products will be available via prescription from 1 November 2018. Meaning the UK is one step closer to cannabis derived medicinal products being approved as a medical treatment for a range of conditions.   

This is a positive step forward to bringing a possible alternative medication to those with uncontrolled, severe epilepsy – one that may help some reduce their risks and stay safer. We know that reducing the number of seizures a person has, is an important way to reduce risk of death. Which is why we have joined forces with other Neurology Charities to show our support if this progress, while publicly stating the importance that this happens by carefully considering the safety, of both those living with neurological conditions, and those on trials involving cannabis derived medicinal products.  

Our response has been featured in the Evening Standard (26 July), and as a collective we will be contacting policy-makers with key recommendations to consider as this process continues, pushing for the safety of those with neurological conditions to be at the heart of decision making.

SUDEP Action are also keen to see these points considered as the Government considers its next steps:

  •  Any deaths (either during research involving medical based cannabis, or in those using cannabis products outside of research) - should be reported to the Epilepsy Deaths Register so our research team are able can track impact and learn lessons from these deaths which could inform government and future research
  •  People with epilepsy and their clinicians should discuss cannabis derived medicinal products as a possible treatment option during their epilepsy reviews – the SUDEP and Seizure Safety Checklist can support this and will be updated to reflect changing evidence when it becomes available

This issue is confusing, with lots of information and products out there claiming to help people better manage their conditions, on top of significant media attention. And with many families desperate to gain control over their loved ones’ seizures, it can seem like 'the only option' is the  widely available, ‘cannabis based’ products as a solution. But this comes with significant dangers, especially if families and clinicians aren’t working together on managing seizures, or openly discussing epilepsy risks and the pros and cons of new treatment options.

We are hugely concerned that this may lead to preventable epilepsy deaths, if information on cannabis derived medicinal products are not shared publicly and shared in a balanced way with messages about the importance of also managing epilepsy risks to reduce risk of death.    

This issue isn’t a simple one – so while it is positive that this issue is being pushed up the Government’s agenda, SUDEP Action still stand by our earlier piece on the need for wider prioritisation of epilepsy before more lives are unnecessarily lost.