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Epilepsy and sudden unexpected death: what nurses need to know

What can be done to reduce the risk of sudden unexpected death in epileptic people (SUDEP) among young people?
Epilepsy

What can be done to reduce the risk of sudden unexpected death in epileptic people (SUDEP) among young people?

SUDEP. These five letters probably have no meaning unless you have been living in the shadow of epilepsy. The acronym stands for sudden unexpected death in epileptic people.

A leading UK charity in the field, SUDEP Action , says the term is used when a person with epilepsy dies without warning and where the post-mortem fails to establish any other cause of death. Such deaths often occur after nocturnal seizures at night or during sleep.

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What can be done to reduce the risk of sudden unexpected death in epileptic people (SUDEP) among young people?

Picture: iStock

SUDEP. These five letters probably have no meaning unless you have been living in the shadow of epilepsy. The acronym stands for sudden unexpected death in epileptic people.

A leading UK charity in the field, SUDEP Action, says the term is used ‘when a person with epilepsy dies without warning and where the post-mortem fails to establish any other cause of death.’ Such deaths often occur after nocturnal seizures – at night or during sleep.

Each year in the UK 1,200 people die due to epilepsy, and half of those deaths can be attributed to SUDEP. To put this into context, a condition that no one talks about is ending the lives of up to 600 people a year.

Sadly, there is a lack of awareness among patients and their loved ones about SUDEP. Many only find out about the condition, and how to minimise the risks, when it is too late.

The importance of building empowering patient relationships

In my view there is only one reason for this low awareness – a lack of consistency from healthcare professionals when it comes to discussing SUDEP with patients. Talking to patients about the condition, the risk factors, and the importance of monitoring nocturnal seizures is vital. It will save lives.

As an epilepsy nurse, I have seen families bereaved from SUDEP. Personally, I have experienced the loss of a friend to it. I know first-hand the devastation SUDEP causes and the importance of building empowering patient relationships.

Forging these relationships allows you to advise and guide patients so they can absorb important safeguarding advice. Then, when it comes to making a dangerous lifestyle decision, your guidance is the voice in their head.

The 18-24 age group is the most at risk because they are likely to leave the family or shared home and with it the support of someone ready to respond to a potentially fatal or unwitnessed seizure.

A monitoring system can raise the alarm to others remotely

At this age, the transition from child to adult services means a loss of therapeutic relationships at a critical time. This can cause a reduction in services and face-to-face sessions at a time when they need more support than ever.

Leaving home comes with the additional stresses of forming friendships, money worries and further exposure to risk-taking behaviours, which can all lead to increased seizures and increased SUDEP risk.

Supporting adolescents: tips for nurses and epilepsy teams

  • Build relationships with your young teenage patients, providing them with the confidence to share their thoughts and feelings
  • Spend as much time listening as imparting knowledge. Let them communicate, be patient and don't expect it all to happen in one consultation
  • Ask the right questions about a young adult’s epilepsy, following the HEADSSS assessment tool:
  • Home – what's home life like?
  • Education/employment
  • Activities – hobbies etc
  • Drugs – medications and drug use
  • Suicide/mental health – ask about their mood and mental health
  • Sex – ask about relationships and sexual health
  • Savagery – ask about exposure to violence, gangs etc

Assess the risks of SUDEP, consider:

  • Type of epilepsy and co-morbidities
  • Seizure type and frequency
  • Medications adherence
  • Risk-taking behaviour (see HEADSSS assessment)
  • Who do they live with and are they with others in the day and at night?
  • If there is a risk of SUDEP, talk about monitoring during sleep. Normalise, discuss their contact list and what might be most practical should the alarm go off during the night
  • Remember we can only give information and document what we have done, so we can't make or expect young people to do exactly what we prescribe
  • Don't make them feel rushed, which could reduce compliance, and agree a follow-up session
  • Open the lines of communication if you have questions and discuss access to virtual sessions

This means it is crucial to have a clinically proven monitoring system such as NightWatch that can raise the alarm to others remotely.

After one young adult in my care went away to university and became a victim of SUDEP I decided to take communication up another level in my clinic. I implemented a new model of care, which means seeing young people every three to six months in the lead-up to the transition and a follow-up in the holidays after the first term away at university.

With knowledge people have the power to manage risks

Due to COVID-19, these appointments are virtual and we discuss key information. The patients also have links to access all the national charity websites, forums and helplines. These include organisations such as Epilepsy Action, in case they need to locate support outside of their NHS epilepsy team.

As with all care, more face-to-face conversations – whether online or not – will reduce the risks associated with living with epilepsy and SUDEP.

It’s so important to arm people with knowledge about SUDEP, so they have the power to manage the risks. Knowledge is power for these patients.

Find out more


Neil Williamson, children's nurse specialistNeil Williamson, @kidsepinurse, is a children's nurse specialist in epilepsy in south London

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