People with epilepsy are missing out on seeing their favourite bands live out of fear of having a seizure in public, but this can change, says charity Epilepsy Action. New data from the organisation shows over half of people with the condition (54 per cent) have avoided going to festivals - like Glastonbury - or taking part in activities altogether, due to this concern.
Concerts, theatre shows and music festivals are the events people with epilepsy have missed out on the most (63 per cent). Nine in 10 people with the condition also believe public spaces do not do enough to help or make people aware of what they should do if someone has a seizure.
With festival season in full swing, national charity Epilepsy Action is giving the essential tools to assist someone having a tonic-clonic seizure in a public space. Here is the charity's go-to 'Care' guide of four key steps:
C – Comfort
Cushion their head with something soft to protect them from injury.
A – Action
Start to time the seizure and try to clear the area of anything that could be harmful. If you’re in a busy place, stay calm and let the people around you know to give the person having a seizure some space.
You could also check if the person has a medical ID or bracelet with more information on how to help.
R – Reassure
After the seizure stops, put the person in the recovery position and reassure them. If you find yourself in a crowded or generally busy space, you may want to help them leave safely and get them to a quiet place to fully recover from the seizure, once it has stopped.
It may be a good idea to locate where first aid or medical tents are.
E – Emergency
Call 999 if the person:
- has a seizure lasting longer than 5 minutes
- is not regaining consciousness
- goes straight into another seizure
- has trouble breathing after the seizure stops
- has never had a seizure before
Some people with epilepsy (around three per cent) are photosensitive, which means flashing lights could be a seizure trigger for them. Some festivals may display a photosensitivity warning, even though it will often be a blanket one, so it may be difficult to know in which performances flashing lights could be a feature.
For people with photosensitive epilepsy, it’s all about personal risk assessment. If someone finds themselves exposed to flashing lights when it’s their trigger, they:
- Can cover one eye with the palm of their hand straight away
- Can turn away from the possible trigger
- Shouldn’t close their eyes (as this could cause a flicker effect)
Not all people with epilepsy have tonic-clonic seizures. For more information on first aid for other types of seizure, visit the Epilepsy Action website at: www.epilepsy.org.uk/info/first-aid
Epilepsy Action has a range of support services to help people coping with diagnosis and daily life with epilepsy, available at epilepsy.org.uk or by calling the Epilepsy Action helpline on freephone 0808 800 5050.
