New research from Epilepsy Action has revealed a widespread lack of confidence among the UK public in knowing how to help someone experiencing an epileptic seizure.
The poll of 2,000 adults found that one in three admitted they would go into ‘flight mode’ if they witnessed a seizure in public, while more than half (54%) saying they simply would not know what to do.
Many of those surveyed also reported misconceptions about the right course of action. Almost one in ten (9%) said their instinct would be to hold the person down, while more than a fifth (22%) thought they should put something in the person’s mouth to stop them biting their tongue, both of which can cause more harm than good to both parties.
Lack of awareness leading to further harm
The findings come as part of Epilepsy Actions’ Could I Count on You? campaign. The charity, which is celebrating its 75th anniversary this year, is encouraging the public to better their understanding on the condition and help create a more supportive and safer environment for the 600,000 people in the UK living with epilepsy.
The research highlights just how narrow many people’s understandings of seizures are with just six in ten (61%) Brits thinking people with epilepsy can lead ‘full and active lives’.
Nearly half of respondents (48%) wouldn’t know what the correct steps are and over a third (37%) said they would only recognise a seizure if someone was convulsing on the ground, despite there being many other types of seizures that are less visible.
Four in ten (40%) admitted they would not intervene because they had never been taught what to do, and almost the same proportion (39%) worried they might make the situation worse. Meanwhile, 32% wouldn’t intervene as they’re afraid of accidentally hurting the other person, and 23% worry they would panic or freeze under the pressure.
More respondents said they would know how to deal better with other emergencies such as choking (54%), broken bones (53%) or a panic attack (56%) than an epileptic seizure (44%).
Rebekah Smith, Chief Executive of Epilepsy Action, said: “It is shocking to see these statistics and really concerning to learn how many people wouldn’t help in a seizure situation. With one in 100 people having epilepsy, you could easily encounter someone having a seizure in a public place, so it’s vital we know the basics to help them.
“The first step is recognising when someone is having a seizure, as many film and TV show representations, where many may have first encountered them, are not always accurate. If there is anyone nearby with first aid training, they will be able to help. But even if not, there are simple steps you can take to help keep someone having a seizure safe. These actions could make a huge difference and even help save a life.”
People with epilepsy worried they can’t rely on UK public
On the back of the findings, Epilepsy Action surveyed 891 people living with the condition in the UK, which showed that 53% would consider it unlikely that a member of the public would step in to help them during an emergency.
More than half (51%) expressed concerns that they could seriously hurt themselves if no one nearby could keep them safe until the seizure ended. The same percentage highlighted that people might misunderstand, judge, or be afraid of them if they had an episode.
This aligns with survey findings showing that if members of the public saw someone walking towards a busy road, a seizure would be one of the last reasons they would assume (2%), with attempted suicide (13%) and alcohol or drug abuse (4%) ranking higher on the list.
Murray Goulder, 45 from Crawley, lives with absence seizures, meaning during these episodes, he can walk without any awareness of what he is doing or where he is going.
Speaking about one experience, he said: “The worst situation was coming home from work one day – I was in Farringdon station. I remember walking down the stairs, then being told I had dropped my bag and walked towards the platform. The gent that stopped me, got me on the next train and went 45 mins in the wrong direction to hand me over to the local station team to get me safely out of the station and home.
“I think the condition is something I’ve grown to deal with, but side effects of medications have varied, including thoughts of suicide last year, struggling with work due to brain fog and fatigue.”
The importance of public support
A lack of training appears to play a major role, with more than three quarters (76%) of those surveyed admitting they had never received first aid instruction specific to seizures and 16% wouldn’t get involved assuming someone else would be more qualified to help.
Yet, 47% of respondents with the condition said they would feel ‘very reassured’ if they knew the public was more aware of how to respond in these situations.
Emphasising the importance of calm, practical support, Rebekah Smith commented: “Seizures are more common than people think and can take many forms, from convulsive seizures to brief episodes of lost awareness.
“Most stop within a couple of minutes, that’s why staying calm is so important – it allows you to think clearly, provide reassurance, and respond in a way that’s helpful rather than harmful.
“Your presence and level-headedness can be incredibly reassuring for the person when they regain awareness. The best thing you can do for someone having a seizure is to remain calm, keep them safe, and wait it out.”
Epilepsy Action has launched an interactive online tool to help the public test their knowledge and learn how to react in a seizure situation: https://www.oathstudio.com/epilepsy-action-epilepsy-awareness-quiz-embed-code/
The charity is encouraging the UK public to CARE, using the acronym as a useful reminder on what people should do, should they witness a seizure in public.
- Comfort: Cushion their head with something soft, to protect them from injury and keep them comfortable
- Action: Start to time the seizure and clear the area of anything that might be harmful. You could also check if the person has a medical ID or bracelet with more information on how to help
- Reassure: When the seizure has stopped, place them in the recovery position, stay with them and reassure them as they come round
- Emergency: Call an ambulance if the seizure goes on for more than five minutes, or if they go straight into another seizure or has trouble breathing.
For more information, visit: https://www.epilepsy.org.uk/