Epilepsy in the East End

Television is a powerful thing. It entertains us. It informs us. It is one of the main ways that we understand our place in the world. The television shows we watch reflect our own lives and give us a sense that we’re not alone with our problems.

This is why it is particularly powerful when epilepsy makes an appearance. Most people don’t know someone who has epilepsy, or don’t know that they do. They wouldn’t know much about the condition – even though it affects around 600,000 people in the UK alone.

EastEnders recently introduced epilepsy as a storyline for one of its most popular characters – Nancy Carter, played by actress Maddy Hill. EastEnders is one of the UK’s most popular television programmes. The first episode to show Nancy having a seizure was watched by over eight million people. I wonder how many of them had never thought about epilepsy before – and wouldn’t have thought about it at all if it hadn’t been for that episode. Nancy experienced another seizure in last night's episode of the popular soap.

Nancy’s seizures are a brave step for the show and are becoming a dramatic fixture in the EastEnders landscape. They are also a big responsibility for Maddy. She admits: “I was terrified. I had never known anyone with epilepsy and I had no idea how I was going to portray it. It was something I never really knew about – and then I suddenly had to immerse myself in it.”

Best of British

Everyone knows EastEnders. Never a soap buff, even I remember the famous showdown between Angie and Den. The programme has been a staple of British television since it first aired in 1985.

Still, the show has attracted criticism in recent years for some of its unrealistic characters that viewers were having a tough time relating to. To give the soap a burst of fresh energy, the BBC brought in a new producer, Dominic Treadwell-Collins.

Dominic took a brutal approach to shaking up the show, including removing Alfie Moon from the nation’s local, the Queen Vic. That made room for a new family – the Carters, headed up by dad Mick, played by Danny Dyer.

The Carter family includes Nancy: a tough tomboy girl with a big mouth and a stubborn streak. Since her introduction in January this year, Nancy has been a very popular character, with The Guardian describing her as “the true beacon of hope for EastEnders future”.

Maddy says: “Nancy is very true to herself and she is very loyal to others. She always sticks up for the underdog. She doesn’t like to see people who can’t necessarily defend themselves get bullied.

“When she first came in she was quite hard-edged, but I think you are seeing a bit more softness to her, which is good!”

Budding actress

Landing the role of Nancy was a dream for Maddy. Like many young people trying to make a living on the screen, she was having limited success.

She explains: “In those two years after drama school, I was auditioning about three times a week. I got the odd little job, but I was basically trying very hard and not getting a lot of work.”

Then along came EastEnders. Maddy continues: “I was over the moon! I’d watched the show my whole childhood. It was such a big part of my life, especially being from East London. The BBC itself is so massive and such an institution. I didn’t really know what to expect of it, but it lived up to what I hoped it would be.”

The role of Nancy is certainly one to exercise anyone’s skills as an actor – not least because her character’s life was very soon to take a surprising turn. Only a month into Nancy’s life in Walford, it was revealed that she has epilepsy.

Maddy explains: “I was terrified. I had never known anyone with epilepsy and I had no idea how I would portray it. I was searching for videos and watching as much as I could.

“It must have been very brave of people to post videos of them or their loved ones having seizures on YouTube. It was very difficult to watch. Epilepsy is something I never really knew about and suddenly I had to immerse myself in it.”

Getting to grips

Ultimately, a soap is for entertainment. Still, a show like EastEnders reaches so many people, the writing team felt a responsibility to cover a serious medical issue like epilepsy accurately. The BBC approached Epilepsy Action early on to make that happen. The organisation’s advice and information officers were involved in the script-writing process.

Maddy’s research continued and soon included speaking to people living with epilepsy. She explains: “One of my best mates’ dads has epilepsy so I spoke to him and his mum. His mum is his full-time carer. I spoke to her about what it’s like when he has a seizure and how long they affect him for afterwards.

“He is housebound and has a horrible time with his epilepsy. He is scared of leaving the house because he doesn’t know if he will have a seizure. After hearing that, it really hit home what people with epilepsy are going through day to day.”

Aside from acting out the social elements of living with epilepsy, acting out a seizure itself must be a daunting prospect for anyone. Maddy continues: “I didn’t care how I looked. I just wanted to stay as true to epilepsy as I could and respect people with the condition – which I hope I have done and will continue to do.”

Having watched YouTube videos of seizures as research, Maddy also had the support of Epilepsy Action in making sure Nancy’s first seizure was realistic. That support came in the form of Dr Hannah Cock – an Epilepsy Action medical adviser.

The reality of a seizure

Maddy says: “The biggest help was Hannah. She is an epilepsy specialist and her son has epilepsy. I spoke to her on the phone and she came on set on the day we filmed the seizure. Hannah went through it with me, bit by bit, explained what was happening and why.

“I had done a lot of research but it still made a big difference on the day. It was so important to have her there. She was so helpful and really honest. I said to her, ‘If it looks completely wrong, please say.’

“It wasn’t easy and there were so many things to consider, including the time, the weather and the dogs! She was amazing.”

Nancy’s first seizure was broadcast on 28 January. Maddy and the EastEnders team received very positive acclaim for their handling of the subject.

Maddy explains: “Generally what I’ve found is that people who have epilepsy, or know someone who does, have been really positive. They’re really pleased about the storyline. They also said that there’s no standard way of having a seizure – a seizure could look like that, which was the main thing I was worried about.”

Sadly, it might not surprise some readers that the response to Nancy’s seizure wasn’t all positive. Social media sites such as Twitter and Facebook were updated with comments that showed how misunderstood epilepsy is. Some viewers seemed to find the seizure funny, while others simply posted inappropriate remarks.

Maddy continues: “People with epilepsy are pleased it is raising awareness… but there have been some really horrible ignorant people who have no experience of epilepsy. That’s why it’s important for shows like EastEnders to cover this condition: to help educate people.”

Learning to manage

It seems odd in some ways that Maddy has had to deal with people’s ignorant attitudes to epilepsy just as her character Nancy would have. Learning to manage life with your condition can be a tough experience to go through. So how is Nancy dealing with it?

Maddy explains: “Something that is so crucial to Nancy as a character is that she’s so hard-nosed and strong-willed. She struggles with her condition because it’s out of her control. Her family know about her condition, but she feels slightly babied by them.

“Her epilepsy stopped her being in the army, which was her dream. It undermines her control, which she finds very difficult.

“I imagine a lot of people with epilepsy can relate to that, but this is just Nancy’s story. It doesn’t reflect everyone’s experience.”

The issues that Nancy is facing on account of her epilepsy will be familiar to many readers. It is to the credit of the EastEnders team that this character’s experiences do reflect those of many real people with the condition.

The negative response to Nancy’s seizure shows us there is still a lot of work to be done to reduce epilepsy-related stigma. Still, when high-profile television shows like this one are brave enough to tackle epilepsy, they help raise awareness of the condition.

This in itself helps the public remember that epilepsy is part of everyday life for hundreds of thousands of people. The fact that one of EastEnders’s most popular new characters is now the familiar face of epilepsy in eight million homes can only be a good thing.

On Nancy’s future with epilepsy, Maddy concludes: “I know that she’ll continue to struggle with it. She’ll resent the fact that it stops her doing certain things, because that’s what her character is like. She may try and do things that she’s not allowed to do and keep her condition under wraps. We’ll have to wait and see!”

Watch Nancy's seizure on last night's episode of EastEnders.

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