Better healthcare systems needed to support ‘honest conversations’
SUDEP Action tools, such as the Checklists, need to be integrated into care systems, rather than just made available.
No single intervention is likely to prevent SUDEP, according to a new research study published recently in Seizure, The European Journal of Epilepsy.
The paper highlights the fact that patients and bereaved families value discussions about SUDEP, yet legislation and litigation often result in shortcomings in these conversations. The study concludes that evidence-based communication – focused on modifiable risk factors – may help reduce early deaths, including SUDEP (Sudden Unexpected Death in Epilepsy).
SUDEP Action were involved in the study, entitled, Role of guidelines, legislation, litigation and mechanisms for SUDEP communication in the UK and USA.
The paper examines how legislation, litigation, advocacy and guidelines shape the way we talk about SUDEP in both the UK and America. Guidelines alone do not work. To truly reduce epilepsy deaths, we need open, honest conversations about SUDEP between clinicians and patients and better and safer healthcare systems that support these conversations.
In the UK, SUDEP Action has successfully campaigned to ensure these vital guidelines are in place, as well as providing a dedicated and unique advocacy service so that families are heard, lessons are learnt after a death, and that real systemic change is more than just words on a page or in a meeting room.
Ben Donovan, SUDEP Action Research Manager, said: “Professional guidance recommending discussions on SUDEP with patients has been in place for decades and our SUDEP and Seizure Safety Checklists provide the ideal tools for clinicians to undertake comprehensive risk-discussions with patients. However, tools are only as valuable as their implementation and this paper, reviewing the broader context around SUDEP communication and prevention, proposes an important solution in the integration of resources. The Checklists should be standardised in epilepsy care systems.”
In light of the paper’s findings, SUDEP Action is calling for guidelines, including our proven Checklists, to be integrated at a system-wide level. This needs to be driven from within the NHS with an accountable lead, rather than just made available as a resource. Such practices should become standard and rolled out evenly across the country. Implementation of guidelines should also be person-centred and fall within the broader context of an individual’s other needs, for example, in mental health. Improvements in data-quality, death-classifications and learnings from deaths, are also necessary to support a better understanding of SUDEP and future death-prevention – and there should be better signposting to SUDEP Action, so the bereaved can access the important services we offer.
