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Untold Distress – the impact of Covid19 on the epilepsy bereaved


New research led by SUDEP Action has found that bereaved people experienced an increased intensity of grief symptoms during the pandemic, when lockdown measures were in place. Grief symptoms experienced included distressing flashbacks and memories of the person who died, and greater feelings of guilt surrounding the death. The research has been published in the medical journal 'Epilepsy and Behaviour'.

The research was conducted by SUDEP Action with the involvement of the Epilepsy Deaths Register Steering Group. Qualitative and quantitative data was gathered from 285 participants. The work was initiated during the early stages of the pandemic by SUDEP Action due to concerns received anecdotally via the charity's support lines. It looked at four key areas, most significantly, how the pandemic (and subsequent lockdown) impacted upon those bereaved by epilepsy and how these experiences were affected by recency of death. Additionally, the research sought to understand how these experiences could be understood in terms of contributory factors and how well supported bereaved people felt during the pandemic. 

The research found: 

  • An increased intensity of grief symptoms experienced by bereaved people during the pandemic when lockdown measures were in place.
  • Grief symptoms experienced included ‘distressing flashbacks to the time of death’, ‘distressing memories of the person who died’ and ‘more feelings of guilt around the death’.
  • In many cases, the prominence of reports relating to ‘sudden deaths’ caused by Covid19 in the media led to much anguish, as did restrictions stopping people from commemorating and recognising key dates relating to loved ones. 
  • All of these experiences occurred in people, irrespective of the date of death. Comparable responses were provided by bereaved people who had experienced a death over a decade prior to Covid restrictions as well as those who had suffered a more recent loss. 
  • At a time when these support needs were heightened, bereaved people found that this disruption adversely impacted upon many of the support networks and structures that they had built up to help them manage their grief. This at the very time that, for many, they were most needed.

Overall, the research highlights that in times of significant disruption, health professionals and patient organisations must react quickly in order to fulfil their role of helping people access the support they need. Ignoring the impact of Covid19 and the response-measures on the mental health of those bereaved by epilepsy now, will also have long-term consequences. 

Ben Donovan, SUDEP Action Special Projects Coordinator, who led on the research, said: "Importantly, and uniquely, this research raises the collective voice of those bereaved by epilepsy and of their experiences during the pandemic. The widespread level of exacerbated grief symptoms experienced needs to be recognised. The research shows us that bereavement is unpredictable, of variable intensity over time and 'lived with' rather than 'recovered from'. It is critical that those bereaved by an epilepsy-related death are always able to receive the support they need in times of relative calm or a national pandemic, and everything in-between."

Jane Hanna, SUDEP Action CEO, added: "The burden of epilepsy deaths can only truly be understood by those with lived experience. This unique research on the burden of harm on the bereaved is strong evidence to further NHS RightCare’s recommendation that after a death, bereaved families are signposted to SUDEP Action as a first port of call for bespoke support and links with services are available to the suddenly bereaved."

Read the full report here