SUDEP Action

Making every epilepsy death count
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21 epilepsy deaths each week in the UK is 21 too many

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In light of the recent Cannabis oil (CBD) scandal picked up by Government, the public and the press - our heart goes out to all families facing huge challenges with access to treatment and services, which could help manage seizures and keep their family members safer.

Our bereaved community, campaigning for over 21 years, know the ultimate cost of this not happening.

21 epilepsy deaths each week in the UK, is 21 too many.

Too many lives lost unnecessarily, so many deaths avoidable. Many because of systematic failure to recognise and tackle the issue; leaving it to SUDEP Action and clinical and research champions to do this.

There have been increasing numbers of recent epilepsy scandals which shine a light more publicly on epilepsy; CBD, Sodium Valproate, Learning Disability, maternal, and premature epilepsy deaths – all of which gain brief, wide-scale attention but address important issues. This attention, towards a long-neglected and stigmatised condition is a step forward. But, public and Government attention on these issues is cursory and too frequently in response to individual cases. The last government action plan on epilepsy was in 2003, in response to a deaths report in 2002. Recommendations that would tackle early deaths, remain unimplemented.

As SUDEP Action is a Charity specialised in supporting the bereaved and dedicated to tackling epilepsy related deaths, we know the importance of people with epilepsy being supported to reduce the number of seizures they have. And, our bereaved families understand first-hand the barriers to keeping people with epilepsy safe.

Lessons must be learned from deaths. Deaths are rising and a report in January buried. Government ministers have not met yet with SUDEP Action, representing the bereaved community and the epilepsy and neurology organisations concerned, to listen to the evidence. There is a real danger that by focusing on singular issues related to epilepsy without looking at the condition as a whole -  including care, services and addressing the deaths that are occurring because of it - people with epilepsy will continue to be at grave risk without the support they truly need.

Research on epilepsy as a condition is underfunded and epilepsy is currently not a priority for the NHS, nor does it look like it will be anytime soon. But without a wide scale focus from policy-makers on how to address the gaps in epilepsy care, people living with the condition, their families and clinicians, will continue to pay the price.

This is why SUDEP Action, in collaboration with others from the epilepsy and neurology community, are calling for Government to support the work being done to address these gaps and tackle epilepsy deaths. We will continue to request a meeting with Government until we are truly heard.

New funding, recently announced by Government for the NHS, will be allocated to help acknowledge epilepsy as a condition requiring urgent attention. It is unacceptable that families at risk are left with little alternative but to seek help outside of the NHS, or have to resort to media and political campaigning to receive support.

This needs to change before more people pay the ultimate price.

So far, our call to policy-makers has fallen on deaf ears, but we will continue this fight on behalf of our bereaved families, those living with epilepsy and their clinicians to do what we can to help save lives.  

We will be bringing our 1000 voices campaign to a UK Summit focusing on tackling epilepsy deaths in November, where we will gather strength from all these voices and the organisations and clinical teams standing with the families.