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Safety advice for people with epilepsy

Cymraeg

This information looks at possible risks in and outside the home if you have epilepsy. It describes how to do a safety check. It covers how you approach risk and how to help yourself feel more confident about going out. Finally it offers some practical tips on staying safe wherever you are.

Epilepsy and safety: frequently asked questions

Do I need to think about safety differently from other people?

Epilepsy can come with some risks to your safety. However, by putting some safety measures in place, you can lower this risk. There are many activities and situations that carry some sort of risk, even if you don’t have epilepsy. But people still do these activities – otherwise no-one would ever cross the road! Like anyone else, you might consider a particular activity and decide the benefits of doing it outweigh the activity’s risk. It’s all about balancing out the risks and benefits.

How could my seizures put me at risk?

If you have epilepsy, your seizures can put you at greater risk of accidents or injuries. During an epileptic seizure, you might fall down, lose consciousness, or have muscle movements that you can’t control. All of these can put you at risk of physical injuries such as:

  • Bruises
  • Burns and scalds
  • Cuts
  • Drowning
  • Fractures
  • Head injuries

Which are the riskiest situations?

  • Heights
  • Traffic
  • Water
  • Sources of heat or power

Does everyone with epilepsy have the same level of risk?

Not everyone with epilepsy has the same level of risk. For example, someone who has seizure control may not be at any more risk than a person who doesn’t have epilepsy.

But someone who has lots of unpredictable tonic-clonic seizures may be more at risk.

As well as accidents or injuries, you can also be at risk of sudden unexpected death in epilepsy (SUDEP). Some people seem to be more at risk than others. Epilepsy Action has separate information about this, including ways those risks can be reduced.

The risk of accidents or injuries depends on:

  • What happens during your seizure
  • Where you are
  • What you are doing
  • Who you are with

How do I decide if there’s a risk for me?

A risk for one person with epilepsy may not be a risk for another person. Some people prefer to take some risks. Other people prefer to stay as safe as possible. You’ll need to find a balance between your quality of life and staying safe. And then you can make a choice that is right for you.

What do I do if someone else sees the level of risk differently?

It is likely that different people will see risk differently. This is especially likely with members of your family. It is understandable if they feel anxious for you, but once you’re an adult, the choice between quality of life and safety has to be yours. It may help to let them know you’re aware of their anxiety. And it would be good to see if, together, you can find a way for them to feel less anxious. This might include agreeing to take a friend with you somewhere, or texting them every so often while you’re out, for example. See safety outside the house for more suggestions.

How do I do a safety check?

A safety check helps you decide whether something is safe for you personally. And if there are risks, it helps you work out what could be done to make that activity safe enough for you to do. It doesn’t need to be complicated. All you need to do is:

  • Think about your seizures – what happens, how often they happen, specific triggers
  • Keep a seizure diary or download an app to help get any information about patterns or triggers. Knowing about triggers and patterns offers some useful information about how to make an activity safe for you
  • Think about what the risks would be if you had a seizure
  • Make a plan to do things that reduce those risks

Here are some questions to help with a safety check:

Safety check questions

What is the activity/situation?

  • When and where will the activity happen?
  • Will there be other people with you?
  • Will there be any potentially dangerous tools or equipment involved?
  • How far would you be from help, if you needed it?

What is it about your seizures that may put you at risk?

  • What happens when you have a seizure?
  • How long do your seizures last?
  • How often do you have seizures?
  • Do your seizures follow any kind of pattern?
  • Do you have any triggers?
  • Do you get a warning before a seizure?
  • How quickly and well do you recover from a seizure?

What can you do to make this activity safer for you?

  • Do you need someone to be with you?
  • Do you need any extra equipment?
  • Do you need the activity to be changed in any way?
  • Do you need any changes to the environment?

Do you have to decide not to do the activity?

Practical guidance on staying safe

Funding

Some of the equipment we mention here may be quite expensive for you to be able to put in place by yourself. Or it may just not be practical in your home, for example if there isn’t enough room. You may be able to get some help with making your home safer from your local authority, if they think that you need it. This would usually involve an assessment by an occupational therapist. You could ask for this through your family doctor, your local social services agency or you could contact an occupational therapist directly. All the details are online.

It’s also possible to ask your local social services department for a general care assessment. As well as looking at any changes you may need in the home, this should include other forms of possible support such as someone being with you while you bath your baby.

Safety around the house

General safety at home

In the bathroom
In the kitchen
In the bedroom
Lifts
In the garden
Safety outside the house
Useful organisations

Suggestions for reducing the risk of burns and scalds

  • Make sure there are no trailing wires attached to appliances that could cause a fire or burns if pulled over. Cable tidies, available from DIY (hardware) stores, can keep wires out of the way
  • Use guards on heaters and radiators to stop you from falling directly onto them
  • Use a fire guard that is fixed to the wall, so it won’t move out of place if you fall on it. Put free-standing heaters in places where they are least likely to be knocked over
  • Use a sensor hairdryer that turns itself off when it is put down
  • Don’t use heated appliances if you are alone – this includes hair dryers, irons, hair straighteners and curling tongs
  • Switch off heated appliances immediately after use and place them out of reach until they are cool
  • Have carpets with high wool content rather than high synthetic content, to reduce the risk of friction burns
  • Install smoke detectors, which can be helpful in two ways:
        - They may alert other people if food is burning because you are having a seizure
        - They will let you know that food is burning if you have memory problems and sometimes forget what you are doing

Suggestions for reducing the risk of cuts, bruises, fractures and head injuries

  • Avoid having very hard floor surfaces - more cushioned flooring, such as carpets, linoleum, cork and rubber, will provide a softer landing if you fall
  • Keep stairs clear of obstructions at all times, to avoid tripping
  • Put a soft rug or carpet at the bottom of the stairs, to cushion any falls. Cover any edges that are sharp or stick out, for example on furniture. Edge and corner guards are available from many different retailers
  • Use toughened safety glass or double glazing in windows or doors, or cover ordinary glass with safety film – contact your local glass merchant or DIY (hardware) store for more information
  • Make sure that any wide-opening upstairs windows or doors from upper balconies have suitable locks, so you can’t fall from them
  • Make sure there are no trailing wires that you could trip over. Cable tidies, available from DIY (hardware) stores, can keep wires out of the way
  • Where possible, use cordless versions of things like irons and kettles
  • For electrical items with long wires, use coiled leads, so you don’t trip over them

In the bathroom

If you have seizures, it is important to take extra care when bathing, because there is a risk of drowning during a seizure.

Suggestions for reducing the risk of drowning

  • Have a shower instead of a bath - it’s safer because the water runs away
  • Ask somebody to stay in the bathroom with you, or to wait outside the door, so they can hear if you have a seizure
  • Put ‘engaged/vacant’ signs on the bathroom door, instead of using locks
  • Have a bathroom door that opens outwards, or folds or slides open and closed. Then, if you fall against it during a seizure, you won’t block someone from getting in

In the bath

  • Keep the water depth shallow and turn off the taps before you get in or
  • Don’t put the plug in, but sit in the bath with the water running from the taps or a shower attachment

 In the shower

  • Have a shower cubicle with a flat floor rather than a shower tray, so that water can’t collect

Suggestions for reducing the risk of cuts, bruises, fractures and head injuries

  • Make sure that any fittings are as flush to the wall as possible, to reduce the risk of banging against them if you fall
  • Have a separate shower cubicle, rather than a shower attachment over the bath
  • Use a shower screen made of plastic or safety glass, or a shower curtain
  • If the shower is over the bath, cover the taps with protective material, such as a thick towel, to avoid injury if you fall
  • If possible, sit down in the shower rather than stand up, to avoid injuries if you fall

Suggestions for reducing the risk of scalds

  • Make sure that the temperature controls work well and that there is a safety ‘cut-off’ in the shower

In the kitchen

Suggestions for reducing the risk of burns and scalds

  • Use a microwave rather than a gas or electric cooker
  • Place saucepans on the back burners and with the handles away from the edge of the cooker, so you can’t knock them over
  • Take plates or dishes to the cooker, rather than carrying hot pans to the table
  • Use a toaster instead of a grill to avoid the risk of burning food
  • Use kettle tippers and teapot pourers, to avoid the risk of spilling hot liquid

In the bedroom

If you have seizures when you are in bed, here are some suggestions for making your bedroom safer:

Suggestions for reducing the risk of burns and scalds:

  • Avoid putting your bed next to a radiator

Suggestions for reducing the risk of cuts, bruises, fractures and head injuries

  • Avoid putting your bed against a wall or next to a radiator, to prevent knocking your limbs
  • Put cushions, pillows or a mattress on the floor around the bed, to reduce injuries if you fall out of bed
  • Choose a low bed, so there is less distance to fall to the floor
  • Keep sharp-edged objects and furniture away from the bed

Anti-suffocation pillows

Some people who have sleep seizures use anti-suffocation pillows. These may be safer than ordinary pillows, although we don’t have any research to prove this. If you are thinking about buying an anti-suffocation pillow, it is advisable to discuss this with your epilepsy nurse or epilepsy specialist.

Epilepsy Action has more information about where to buy anti-suffocation pillows

Lifts

If you have mobility difficulties, you may need to use a stair lift or vertical lift. Neither of these options is risk-free if you have seizures, and there is no perfect solution. To a certain extent, it is a matter of arriving at a compromise between the safest option and what is practical.

Vertical lifts

Where possible, because they are likely to be small, confined spaces, these should have a padded interior to cushion the blow if you fall.

Stair lifts

  • Most stair lifts have simple straps which you should use, as they are not likely to cause injury if you have a seizure
  • You may need to wear a full harness to prevent you from falling, but be aware that this could cause injury during a seizure. This may, however, be safer than falling from the stair lift

In the garden

Suggestions to reduce the risk of burns and scalds

  • Avoid getting so close to bonfires or barbecues that you could fall on them during a seizure
  • If you sometimes wander during a seizure, ask someone to stay with you when you are near a bonfire or barbecue

Suggestions to reduce the risk of drowning

  • Don't have ponds or pools
  • If you do have ponds or pools, make sure they are securely fenced off when you are alone in the garden

Safety outside the house

Many people with epilepsy worry about having a seizure when out and about.  This is a very common reason why you may feel you are safer staying at home. There are lots of reasons why you might be worried:

  • Hurting yourself
  • Embarrassment/reaction of public/being misunderstood
  • Being taken to hospital unnecessarily
  • Creating problems at work
  • Spoiling an event for your companion/someone else

Some tips for staying safe outside

  • Make careful decisions based on what you learn from each safety check
  • Put everything possible in place to minimise risk
  • Carry a card or medical jewellery which explains that you have epilepsy, what first aid you may or may not need and who to contact
  • Consider whether some kind of alarm or tracking device would be useful for you
  • If you are feeling anxious about getting out, ask your family doctor if there are any groups which might help you with this
  • If you are worried about how your friends or colleagues will react if you have a seizure, share your concerns and check out if they are accurate. If they do have concerns, they may need more information about epilepsy. You could share this yourself or point them to Epilepsy Action resources

Epilepsy identification

You may choose to carry or wear some form of identification, especially if you’re out on your own. This could be an ID card or medical identity jewellery.

Alarms for inside and outside the home

There are different types of alarms that can be helpful for some people with epilepsy. The type of device that could work for you will depend on what you want the alarm to monitor (movement, falling, noise) and who is going to respond to the alarm. Some alarms will only work in the house. Others can send a message to someone at quite a distance, but they’re more expensive.

If you don’t know someone who could respond to an alarm in the house (for example if you live alone) you may want to consider a telecare system. A telecare system is where an organisation such as social services would respond to the alarm. The equipment may be cheap or free but there’s a weekly charge for the service. The NHS Choices website has a good introduction to these. You may also want to ask your epilepsy nurse or specialist for their advice about equipment.

Website: nhs.uk

Types of alarms

  • Baby intercoms or other listening monitors which can pick up sound
  • Visual monitors
  • Bed alarms or bed sensor mats that can sense different things when someone is asleep, such as unusual sound or movement
  • Fall alarms, which can be set off when someone falls to the ground
  • Telephone alarms, which can be operated by remote control by someone who needs help
  • Smart watches, which can let someone know if you’ve had a seizure and where you are

For information and advice about alarms and where you can get them, you can contact the Disabled Living Foundation’s equipment helpline.

Tel: 0300 999 0004  (calls charged at local rate)
Textphone: 020 7432 8009 (calls charged at standard rate)
Email: advice@dlf.org.uk

The Disabled Living Foundation's website is called Living made Easy.

Telecare alarms (alarms which are linked to a help centre)
Website: livingmadeeasy.org.uk/telecare

Bed alarms
Website: livingmadeeasy.org.uk/bedroom

Epilepsy Action has more information about daily living aids

How can I get around safely when I can’t drive?

If you don’t meet the epilepsy and driving laws it’s important that you don’t drive. For many people this is really hard to come to terms with. And some people also have concerns about staying safe on public transport. If you feel confident using public transport, make sure you plan your journey ahead of time. Also see if there is anything from our general list of staying safe outside the home that would help.

Here are some ways in which people plan their lives when they can’t drive:

  • Ask for lifts from family, friends and colleagues
  • Consider living near a good bus route or railway station
  • Plan your journey in advance, so you feel confident about where you are going
  • Use a free bus pass and Disabled Person’s Railcard
  • Use taxis when necessary
  • Do shopping online
  • Walk, if it’s possible
  • Cycle, wearing a helmet and avoiding busy roads where possible

Useful organisations

Disabled Living Foundation
Runs an equipment demonstration centre and provides information about equipment for daily living.
Website: livingmadeeasy.org.uk

Rica
National research charity providing independent information to older and disabled consumers.
Tel: 020 7427 2460
Website: rica.org.uk

College of Occupational Therapists (COT)
Can help you find an occupational therapist and advise you on home adaptations or equipment.
Tel: 020 7357 6480
Website: cot.co.uk

Dan’s fund for burns
Provides help for people affected by burn injuries.
Tel: 020 7262 4039
Website: dansfundforburns.org

ROSPA (Royal Society for the prevention of accidents)
Promotes safety and the prevention of accidents at work, at leisure, on the road, in the home and through safety education.
Tel: 0121 248 2000
Website: rospa.com

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050. 

Code: 
B015.04

Epilepsy Action would like to thank Christine Hanson, Advanced Clinical Nurse Specialist in Epilepsy in Cardiff for her contribution to this information.

Christine Hanson has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated October 2016
    To be reviewed October 2019

Comments: read the 1 comments or add yours

Comments

Will now take more seriously the fact that I need to make changes, firstly by accepting what can happen to me.

Submitted by Muriel Nichols on