Guidance: Seizure Management in Aquatic Environments

GUIDANCE

What is a seizure? 

Over 500,000 people have epilepsy in the UK. That's around 1 in 100 people. Epilepsy is a neurological condition and one of the main causes of seizures. A seizure occurs when sudden uncontrolled bursts of electrical activity disrupt normal electrical impulses that control brain function. Seizures are regarded as partial, with no loss of consciousness or generalised, where consciousness is lost. The duration of seizures can vary from a few seconds to several minutes. Seizures may be congenital or acquired. 

What guidance is available? 

• Epilepsy Action. Sports and leisure. Available at https://www.epilepsy.org.uk/info/daily-life/sports-leisure accessed 23 January 2023. 
• Epilepsy Action. Work. Available at https://www.epilepsy.org.uk/living/work accessed 23 January 2023. 
• Swim England. Epilepsy and swimming. Available at https://www.swimming.org/justswim/swimming-with-epilepsy/ accessed 23 January 2023. 
• Swim England. Diabetes and swimming. Available at https://www.swimming.org/justswim/diabetes-and-swimming/ accessed 23 January 2023.
• Epilepsy Society. Available at https://epilepsysociety.org.uk/ accessed 23 January 2023. 
• Epilepsy Foundation. Seizures in water. Available at https://www.epilepsy.com/stories/seizures-water accessed 23 January 2023. 
• CIPD. Managing and supporting staff with long term health conditions. Available at https://www.cipd.co.uk/knowledge/fundamentals/relations/absence/support-long-term-health-conditions accessed 23 January 2023.

Types of seizure

The International League Against Epilepsy (ILAE) announced in May 2017 a new classification system for seizures. Seizures in this new system are divided into groups based on where they start in the brain, a person's level of awareness during the seizure and whether the seizure includes other symptoms such as movement. 

• Myoclonic seizures - myoclonic means 'muscle jerk', and these seizures are not always due to epilepsy. They tend to be brief and can happen in clusters, often shortly after waking. 
• Atonic seizure - is characterised by a person's muscles suddenly relaxing and they become floppy. Often results in falls if stood up. Tend to be brief and happen without warning. Recovery is typically fairly quick. 
• Tonic clinic seizures - are typically what people associate with epilepsy. The person becomes unconscious and falls if stood up. They jerk and shake as their muscles relax and tighten rhythmically. 
• Absence seizures - are more common in children and can happen frequently. Characterised by a blank stare, they are typically unresponsive, and their eyelids may flutter. If they are stood up, they may continue walking but be unaware of what they are doing. 
• Focal-aware seizures - were previously called partial seizures, where the person is conscious and will usually know something is happening. 
• Focal-impaired awareness seizures - affect a bigger part of one hemisphere of the brain than focal-aware seizures. Previously called complex partial seizures. 

What might trigger a seizure?

Triggers are individual, and what acts as a trigger for one person with epilepsy may not for another. Alcohol is a common trigger for epileptic seizures, especially during the hangover period. This is partly due to a dehydrated brain being less responsive to epilepsy medication or making the side effects worse. Recreational drugs can also make epileptic seizures more likely. 

Photosensitive epilepsy is when seizures are triggered by flashing lights or contrasting light and dark patterns. Only around 3% of those with epilepsy have photosensitive epilepsy. It is more common in young children and young people (around 5%) and less common beyond the age of 20 years old. The most common trigger for photosensitive epilepsy is flashing lights between 3-60 hertz. Checked patterns and white and black stripes are also common triggers for people with photosensitive epilepsy. 

What do I need to know about someone's epilepsy? 

• Types of seizures they have, how often, and what happens. 
• Common triggers for seizures.
• Whether they have a history of status epilepticus or require emergency medication. Status epilepticus is when one seizure leads immediately to the next without the person recovering in between, which continues for more than five minutes. Whilst infrequent, it is important to recognise the need to call 999 in this instance. 
• How long it typically takes them to recover from a seizure.
• Whether they take any anti-epileptic drugs.
• Whether they have a medical ID card or jewellery.

What is the risk of having a seizure whilst using an aquatic environment? 

In a 2018 study of 1,346 drowning deaths by Cihan et al., drowning was identified as being responsible for 36 definite and a further 11 possible deaths. 76% of these occurred in the bath. Epilepsy is the third most common cause of death occurring in the bathtub, superseded only by cardiovascular disease and drug/alcohol intoxication. Drowning accounts for around 8% of the deaths in children and young adults with epilepsy in the United States. The fatal drowning rate is 15-19 times higher in people with epilepsy compared to the general population. Almost none of the US-based cases examined by Cihan et al. involved the death of a person with epilepsy in a supervised water environment. 

There is currently no reliable means by which to distinguish in a postmortem environment whether death resulted from drowning or sudden unexpected death in epilepsy (SUDEP). A cause of death is attributed as 'drowning' or 'SUDEP' principally because of the reported factual circumstances in which they are said to have drowned. Incident rates and exposure risk statistics around drowning in people with epilepsy, therefore, need to be viewed cautiously. 

Can you be a lifeguard if you are at particular risk of a seizure? 

Yes, and in most cases, you will be entitled to reasonable adjustments under the Equality Act 2010 concerning your condition. Only 34% of people with epilepsy in the UK work full-time. Sector employers, therefore, need to do more to attract and retain this talent pool. 

There is a lack of guidance from the UK on how to encourage and manage staff with epilepsy across all aquatic environments. Industry bodies should consider putting guidance in place to ensure that those with epilepsy do not experience discrimination in seeking and maintaining work in the sector. Your employer will likely need to take additional precautions to protect your safety and that of others whilst you lifeguard the pool, including: 

• You should discuss your condition, including the duration, characteristics, and frequency of your seizures, and any triggers you experience with your employer or potential employer to identify what reasonable adjustments are required in your role. 
• You take any anti-epilepsy medication as prescribed.
• You notify your employer if changes to your medication or condition present a substantially increased risk of seizures whilst on shift. 
• A second lifeguard is on the poolside at all times when you are providing constant poolside supervision.
• You avoid heavy lifting or working at height at times when your condition presents a substantially increased risk of seizures (e.g. the top of flumes or sitting in high chairs). At times when your condition is under control, you may be required to carry out these duties. 
• You are not put in a situation where you would constitute a lone swimmer, including in any training sessions or as a pool user. 
• It may be advisable that you are equipped at all times with a fall monitor and/or communication device to summon assistance from colleagues should you require it.
• In outdoor water environments, you should always swim with a tow float and wear a personal floatation device, whether training or performing a rescue. 

How do you make aquatic environments inclusive for those at risk of seizures? 

There is a lack of guidance in place to keep those with epilepsy safe when using open-water environments in the UK. Open water presents a greater risk than swimming pools to those with epilepsy because of the risks posed by submersion and the barriers to recovery experienced in these environments. 

• Encourage the disclosure and discuss with the individual with epilepsy their specific needs, triggers for seizures, their frequency and characteristics.
• Wear a buoyancy aid when in the water. Wearing a personal floatation device should be mandatory for people with epilepsy in open water unless in-water 1-2-1 supervision is provided. 
• Always swim with a friend. Having someone who can respond quickly to prevent submersion substantially increases the quality of outcomes in people with epilepsy. Ensure your friend knows how to recognise your seizures and knows how to respond. 
• Always swim where constant waterside supervision is in place. 
• Avoid using patterns with high contrast in marketing materials and wall art. 
• Ensure the venue is free of strobe effects and flashing lights. 
• Train staff on how to support during a seizure and when to ring 999.
• Ensure the venue does not permit unsupervised lone swimming. 
• Do not rely solely on assistive lifeguard technology in swimming pools to detect drowning in persons with epilepsy. To my knowledge, the positive detection rate of assistive lifeguard technologies has never been tested concerning casualties experiencing seizures, particularly tonic-clonic seizures. There is significant concern that these systems may be unduly delayed in making a positive detection due to the movement associated with tonic-clonic seizures. 

Citation. Jacklin, D. 2023. Guidance on seizure management in aquatic environments. Water Incident Research Hub, 28 January.