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Brain Hospital: saving lives


31 January 2013

Brain Hospital: saving livesAs the first episode of Brain Hospital: Saving Lives aired on Tuesday night (29 January), our digital team were eagerly watching as they worked. Here are their thoughts on the programme.

Those of you following us on Twitter might’ve noticed a flurry of activity on Tuesday night, as we watched the first episode of Brain Hospital: Saving Lives. This Channel 5 documentary followed the story of three people as they faced brain surgery.

One of them was Kelsey, aged 21, who underwent deep brain stimulation (DBS) to try and treat her severe epilepsy.

Like most people living with epilepsy, Kelsey looks no different to anyone else. But when her seizures hit, you could see a glimpse of what she lives with every day. Kelsey’s seizures aren’t the ones usually associated with epilepsy – dropping to the ground and shaking. Instead, they consist of stiffness and tonic posturing, and they were happening very frequently. For lots of people watching at home, this was the first time they’d seen a real seizure, and it wasn’t what they were expecting.

For Kelsey, The Walton Centre medical team suggested DBS – an invasive treatment, but one that the family was determined to choose. In Kelsey’s own determined words:

“It’s ruining my life. I’m getting that operation.”

Of course, as with any medical procedure, there are risks with DBS. But, as Kelsey’s Mum said, they’d had long consultations with the doctors, weighed up their options and still come to the same decision:

“There’s no choice; she either lives her life having these seizures every day…or she has the surgery. It’s worth the risk if there’s any reduction.”

As we watched Kelsey’s story, we saw that, aside from being an interesting look at brain injury, surgery and epilepsy, Brain Hospital turned out to be a brilliant discussion point. Twitter went wild with people posting about what they were watching, and it was all really positive.

“You are all amazing. My eyes have been well and truly opened tonight”

“I’m hoping for a positive outcome for Kelsey and many more like her”

“Incredible programme”

It was brilliant for us to see so many people watching the show, talking about it on Twitter and, even better, showing their support. What came across more than anything else was people’s admiration for the patients and their families; the words ‘brave’ and ‘amazing’ were used more times than we could count.

Brain Hospital reinforced something we really believe: having support when you’re dealing with epilepsy – at the point of diagnosis, making treatment decisions, and living day to day – is incredibly important. It showed families and friends sticking together to get through a really difficult and scary time, and that’s what we’re here to do. We want to provide help and support for anyone who needs it, to make sure that everyone feels listened to.

Kelsey’s story ended on an uncertain note, as she waits to find out what effect the treatment will have over the next two years. That might seem anticlimactic, but we were pleased that the programme showed the reality of the situation. There is no quick fix for epilepsy, whether you’re treating it with surgery or medication. It’s a long road to seizure freedom, but it’s one we should all hope for.

We regularly talk to people (through our helpline as well as face-to-face at our information points and conferences) who are in the midst of wrestling with big decisions. Brain surgery isn’t viable for everybody with epilepsy but, for those with that option, making the choice to go ahead with a procedure like DBS isn’t easy.

If you’re considering brain surgery and need some support, or just want to talk to someone about epilepsy, our fantastic UK helpline team are available on 01494 601400, Mon to Fri from 9am to 4pm (and until 8pm on Wednesdays).

Our website is also packed with information about DBS and other treatments, so if you’re interested in finding out more, take a look.

Don’t worry if you missed Brain Hospital – you can watch the first episode online.