Epilepsy Action

“ We exist to improve the lives
of everyone affected by epilepsy ”

Take epilepsy action campaign

Update March 2012

Take Epilepsy Action logo

The campaign is now in its second stage. We are now looking for employers and employees to get involved in Take epilepsy action. And size doesn’t matter.

If you’re an employer - can you Take epilepsy action in your own company?

If you’re an employee - can you talk to your manager about the campaign, or ask for the Take epilepsy action video to be shown as part of the staff first aid training?

Alternatively, can you tell us who is responsible for human resources and employee welfare within your organisation? We will then try to speak to them about our campaign and offer them an opportunity to get involved.

We want to provide your business with a Take epilepsy action employers pack. These packs will provide information on epilepsy, first aid, employment rights and risk assessments for staff with epilepsy. It also includes some of our resources, such as our Action cards and a copy of our first-aid video.

We can adapt the Take epilepsy action package to suit the needs of different organisation. For example, we worked with the Association of Chief Police Officers to make a training video to help new fire-arms officers to recognise different types of seizures, and how to provide appropriate first aid. Some organisations might choose to have an epilepsy first aid and awareness session. Others prefer posters and leaflets.

Who can get involved?

Not working but keen to help? There’s plenty of ways to get involved in this campaign. You could:

  • Take a campaign poster to your local GP, community centre, religious centre, residents association, gym or school and ask for it to be added to the notice board.
  • Share the Take epilepsy action videos at www.epilepsy.org.uk/action and www.epilepsy.org.uk/absence with your contacts.

To support our Take epilepsy action campaign by ordering resource packs or providing information about your employer, please email action@epilepsy.org.uk or call 0113 210 8800.

Thanks again for campaining with us!


On Tuesday 20 September 2011, we launched a new campaign aimed at the general public.

Take epilepsy action is a national campaign to raise awareness among the general public of different kinds of seizures and appropriate first aid.

What’s happening?

Nearly nine out of ten people in Britain would get basic first aid for epileptic seizures wrong.

We did a YouGov survey of more than 2,000 people and found that:

  • 88 per cent would either actively do something wrong or would fail to take all of the right actions.
  • Almost a third (29 per cent) of people would actually do something dangerous when trying to help someone having a seizure.
  • Around a quarter (26 per cent) of respondents said that they would attempt to put something in someone’s mouth to stop them swallowing their tongue.

Others would fail to do the correct things, such as cushion the head (45 per cent) or look for an epilepsy ID card (65 per cent).

We also did a survey of more than 1,000 people with epilepsy, which found that 88 per cent worry about having a seizure in public. Almost two thirds (64 per cent) said that they worried that people would not know what to do.

So we are launching Take epilepsy action around the UK to help the public to recognise different kinds of seizures and first aid for seizures. As part of the Take epilepsy action campaign, we have developed an ‘ACTION’ acronym* to help people remember what to do if they see someone have a tonic-clonic seizure.

ACTION - First aid for tonic-clonic seizures

The person goes stiff, loses consciousness, falls to the floor and begins to jerk or convulse. They may look a little blue around their mouth from irregular breathing. Tonic-clonic seizures can last a few minutes.

Remember ACTION for tonic-clonic seizures:

A Assess
Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury
C Cushion
Cushion their head (with a jumper, for example) to protect them from head injury
T Time
Check the time – if the seizure lasts longer than five minutes you should call an ambulance
I Identity
Look for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
O Over
Once the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N Never
Never restrain the person, put something in their mouth or try to give them food or drink

Call an ambulance if:

  • You know it is a person’s first seizure, or
  • The seizure lasts for more than five minutes, or
  • One seizure appears to follow another without the person gaining consciousness in between, or
  • The person is injured, or
  • You believe the person needs urgent medical attention

We have also launched a two-minute video that gives first aid information based on the ACTION message.

In the first week of the campaign we held launch events in Newcastle, Nottingham, Bristol, Liverpool, Manchester, Birmingham, London, Belfast, Edinburgh, Cardiff, Leeds, Norwich and Southampton. See photos from the events

Help us promote the campaign

You can help us spread the message about good epilepsy first aid:

Take epilepsy action poster

With your help, we can make the Take epilepsy action campaign a massive success and teach thousands of people about epilepsy first aid.

Contact us

To find out more about how you can get involved, contact the PR and campaigns team. Simply email action@epilepsy.org.uk or call us on 0113 210 8889. If you can’t get to one of these cities, contact us to find out how you can support the campaign in your local area.

The campaign will run for 12 months and target different audiences with the same messages about different kinds of seizures and first aid. If you have an opinion about the different kinds of people we should target, please email action@epilepsy.org.uk

Update, 23 September 2011

We've been across the UK this week launching our Take epilepsy action campaign.

  • Thanks to our fabulous army of volunteers who joined us in Newcastle, Nottingham, Bristol, Liverpool, Manchester, Birmingham, London, Belfast, Edinburgh, Cardiff, Leeds, Norwich and Southampton.
  • Thanks to everybody who told their story to the media. The TV, radio and newspaper coverage we've had this week has been really important in getting the ACTION message out to the general.
  • Thanks to everybody used the web to get involved, and to share the video with their friends, family and everyone they knew.

Once the campaigns team (who've been running round the country alll week!) have had the weekend to recover, we'll be starting the next part of the campaign.

YES! I want people to know first aid for epilepsy.
£30 can give over 150 people a wallet-sized guide to first aid for seizures.

Donate

Read our first aid for seizures appeal

You can also support the take epilepsy action campaign through a text donation. If you live in the UK, simply text ACT NOW to 70700 to donate £5 to Epilepsy Action and help support people living with, and caring for, people with epilepsy.*

*Texts cost £5 plus your standard network rate. Epilepsy Action will receive 100 per cent of the donation.

What's been happening?

Comments: read the 3 comments or add yours

Comments

I am really pleased to see this campaign and wish you every good luck in raising awareness of "this type" of epilepsy, however, what concerns me is theat you are suggesting to the general public from this video that this is a typical experience for someone with epilepsy, where as this neurological condition can be far more complex than it would appear in this short video.

How many people with epilepsy are able to get up and walk away after a tonic clonic fit as you video would suggest? Many are confused/agitated will require spare clothing as they may have wet themselves or worse! and/or would need some one to stay with them until they are able to stay safe and take some kind or responsibilty for themselves this can take up to an hour in some cases.

I have had a really hard time getting people to understand how complex my daughters epilepsy is in the main this is due to the way people the media percieves this condition and campaigns that deliver information the general public assume that is aere is to it. (Fall down convulse for up to 5 minutes place in recovery position sit up walk away and get on with your day!)#

It's such an invisible condition it's often extremely debilitating and disabling, can be life threatening and extremely misunderstood. A bit like having a blue badge but only if you are in a wheel chair! That wheel chair symbol should be changed because, in the eyes of the public you are only disabled if you have a wheel chair, walk with aids of some kind, have a guide dog or hearing dog, otherwise as a disabled person who can walk (sometimes) you get the "wicked stares" when you park with your badge in the disabled bays, or the tut tuts when using the disabled loos and the letter you have to carry around "proof of eligibility" disabled, when entering any public theme parks etc or risk having to pay for your self and your carer because actually you can walk and talk and don't look disabled. Efforts you need to go to when going to the cinema or theatre to get a seat that you can be vacated from easily if you fit during a perfomance!

I worry that your campaign makes epilepsy look different to how I witness it and definately the people that support my daughter would not apppreciate or identify that video with what actually happens. A bit like the media tv Casualty etc you are suggesting to people this is how it looks but in reality they could be faced with a very different experience and one which is quite scary. Therefore it is likely the video has not prepared them very well and they would feel able to help or even worse identify this as an epileptic fit!

Sincerely Vicki

Submitted by vicki on

Change "N" section to:

Never try to restrain the person.
Never put something in the person's mouth.
Never try to give the person food or drink..

Submitted by PENRY THOMAS on

IAm usually with my Epileptic daughter and have coped many times with no difficulty however she suffered a fit at home. Her husband tried to hold her up, pulling on her arms and all but dislocated her wrist.he had told us he knew how to deal with it, my grand daughter rescued her and put her in the recovery position, then we took her to hospital for x-rays. have you a leraflet we could give him as he will not listen to what we tell him as we are "just silly women"

Submitted by Iris McGinnis on

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