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Epilepsy Society calls on Gov to safeguard people with photosensitive epilepsy online

Epilepsy Society is calling on the Government to safeguard people with photosensitive epilepsy online by regulating flashing images that could induce a seizure.

Around 20,000 people in the UK have photosensitive epilepsy where seizures are triggered by flashing lights or contrasting, quick-fire imagery.

Epilepsy Society is seeing an increasing number of complaints from people with photosensitive epilepsy who feel shared online content with fast paced videos, animations and flashing lights leave them vulnerable to seizures due to lack of warnings.

Alongside this, malicious content is being 'tagged' with keywords around epilepsy to deliberately target those with the condition and induce a seizure.

Online Harms white paper

Now the Epilepsy Society is asking the Government to include regulatory measures in its Online Harms White Paper that will help protect people who are photosensitive - many of them under the age of 20 - from potentially harmful content.

Chief Executive Clare Pelham said: "Many people share videos with potentially dangerous content without realising the danger that it could pose to someone who is photosensitive. And we absolutely recognise that there is no intent to cause harm here.

"However, when it comes to deliberately targeting people with epilepsy with the intention of causing a seizure, behaviour that some people call cyber bullying, we need to call that behaviour what it is - a pre-meditated and pre-planned intention to assault. The Government must bring this behaviour within the reach of the criminal law."

Warnings for flashing images

The charity is calling on the regulator to fine tech companies that do not step up to their responsibilities and insist on suitable warnings for flashing images as on terrestrial television.

"But more than that, where the behaviour is deliberate and intended to provoke a seizure, they should be required to support the police in bringing a prosecution," Clare Pelham continued. "This behaviour is deliberately cruel and hateful and often targeted at vulnerable people."

Children and young people

Photosensitive epilepsy is most common in children and young people. And research shows that children spend two hours a day watching the television and over two hours a day online.

"Traditional television content is well regulated by Ofcom with warnings being given both audibly and visually before any flashing images are shown. Unfortunately the same rules do not apply online and we think that they should," said Clare Pelham.

Letter to Jeremy Wright

The charity has written to Jeremy Wright, Secretary of State for Digital, Culture, Media and Sport asking for his reassurance that his Online Harms paper will safeguard people with photosensitive epilepsy.

Clare Pelham wrote: "We would be grateful if you would kindly make it clear publicly that the deliberate inclusion of flashing images that might trigger a seizure will be explicitly included in the online harms that future legislative and regulatory measures will address. This would be very reassuring to people with epilepsy as there is now an increasing level of concern about this cruel and hurtful behaviour.

"In addition, it would be widely welcomed if you could make it clear now that online posts will be required to carry comparable warnings to those on traditional media if they contain flashing lights or imagery."

Sophie's story

Sophie Harries,22, is a dietitian from Somerset. She was  diagnosed with photosensitive epilepsy at the age of 15. She explains how it affects her life.

"When I was first diagnosed with photosensitive epilepsy, social media wasn't as big as it is now, so it wasn't such a problem for me. Once I went to uni I had to be careful to avoid strobe lighting so couldn't go out clubbing with my friends.

"That is still the case, but now  I have to be careful of any videos uploaded to social media that contain strobe lighting or flashing imagery. The videos tend to play automatically putting me at risk of a seizure. If my friends have been out clubbing I have to avoid social media for a while.

"But so much of the shared content can cause a problem. There was a recent trailer for a film which contained flashing lights. I reported it to Instagram but they just said it wasn't breaching their current terms of usage.

"You can un-follow posts but they still tend to follow you around. For a 15 year old today it is an absolute minefield. Young people are permanently on social media with friendship groups. It is their way of finding out who they are. If I was 15 years old today and just diagnosed with photosensitive epilepsy, I would have to avoid social media altogether or risk lots of seizures."

BBC News

On 16 April 2019, BBC also reported widely on the issue. You can read the BBC News article or watch Sophie's interview on BBC Breakfast, as well as an interview with our CEO Clare Pelham about the more sinister content that has been seen online, at 24 minutes 16 seconds.

BBC Radio Newcastle and BBC Radio Leicester also spoke to Clare in a longer interview about the issues facing those affected by photosensitive epilepsy online. Listen to BBC Radio Newcastle at 20 minutes 13 seconds and BBC Radio Leicester at 1 hour 5 minutes 59 seconds.

Epilepsy Society's CEO Clare Pelham speaks to BBC Breakfast about the risks facing people with photosensitive epilepsy online

More information

Find out more about photosensitive epilepsy.