SUDEP Action

Making every epilepsy death count
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'My Safety Matters' is an important theme for now


By Jane Hanna, SUDEP Action Director of Policy & Influencing

My Safety Matters’ is central to SUDEP prevention. Safety matters because we care for life. We care when a person dies too young, most especially when the events leading up to a death could have been different if safety had mattered. We care when someone with epilepsy dies suddenly and officialdom ignores guidance and goes too quickly in search of some other cause, or for no cause at all.

When my partner Alan died in 1990 the word SUDEP did not exist and there was no epilepsy guidance at all. SUDEP and epilepsy guidance has been developing in the UK since 2004 but still, too often, safety gets discarded. When concern for safety is thrown aside the impact can be catastrophic. Any sudden bereavement is truly devastating for the immediate family. I know from lived experience that close friends and colleagues too, can be left for decades with feelings of confusion and questions of unresolved grief. Shared understanding and purpose can be deeply healing.  

Across the world we have seen an escalation of epilepsy risk and complexity, especially since 2020. In the UK where we have independent national surveillance of deaths in people with epilepsy, we have seen increased deaths, with many avoidable. In pregnant women we have seen a near doubling of deaths.

The theme ‘My Safety Matters’ is necessary for now. A system for safety is not enough in itself to help people thrive, but people cannot thrive without it. I spoke earlier this month at two national conferences in front of over a thousand UK clinicians about the theme to galvanise attention to what we can do together to make safety matter.

Recognising the safety problem and its urgency is a vital first step. The second is a SUDEP movement to convince policymakers at all levels, whether working in research or care, of the necessity of listening to families. We can share the lessons from national surveillance and research and insist that the state has a minimum responsibility to patient safety when making policy, and that it takes a precautionary approach to ensure the prevention of deaths.

If we put people with lived experience of epilepsy and SUDEP at the centre of decision-making we will be propelled forward, no matter the challenging times we face. Learning from deaths means giving priority to supporting improvements to the organisation of services, support systems and communication. Most of the time, process rather than cure is what makes the difference between good and substandard care.

Two decades ago a Lancet editorial provided a wake-up call to recognise the evidence from deaths in the UK and this call urged investment to bring existing research knowledge about epilepsy and mortality into practice. In 2023, we now have a very significant body of research. Similar wake-up calls have appeared routinely in national and regional reports looking at the prevention of future deaths for many years. Over a thousand reports from the suddenly bereaved and lessons from independent national and regional investigations tell us that whatever the circumstances of a death, good care must normally include person-centred communication about SUDEP and epilepsy risk. Without this, unique opportunities for life choices and possible interventions, whatever they might be, are left unexplored. If sudden death follows, so does traumatic and complex grief. 

Real effort to prevent deaths over the next five years and beyond requires a focus on the improved organisation of services, support and communication. Where families have been at the centre of change, enablers have been identified to drive improvements to care. A focus on improved organisation would also mean significant new findings in research could more readily be put into practice for patients.  Since 2010, bereaved families and clinical research champions have invested in checklist and digital tools that can accelerate tackling the SUDEP communication gap and include significant new research findings as they arise. A number of local areas in the UK are now choosing to identify and use what local enablers they have to make regional improvements. Working together where there are readymade teams of people motivated to listen to families and make change is rewarding for all.

Most importantly, on our ninth SUDEP Action Day,  we surround ourselves with those that share our purpose and our compassion. We hope through present and future collaborations we can ensure that safety really does matter and that the process of positive change can move forward.