On Top Of Epilepsy
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#OnTopOfEpilepsy

Help children with epilepsy get the mental health support they need

Every child with epilepsy deserves mental health support as part of their care. Let’s call on UK healthcare leaders to make this a reality. Sign our #OnTopOfEpilepsy petition!

Sign the petition

Why is the #OnTopOfEpilepsy campaign happening?

Epilepsy is not a mental health condition, yet children with epilepsy are four times more likely to develop mental health problems than other young people.

This is because there is more to epilepsy than seizures alone.

Children like Bella face a wide range of physical, social, and emotional challenges, all of which can have a significant impact on their daily lives and may leave them feeling anxious, isolated, and overwhelmed.

"Bella missed so much time at school because of seizures, surgery and a lack of understanding about epilepsy. She felt isolated, despondent and angry and just wanted to be able to do the same things as other children, like playing round friends' houses."
- Bella's mum

When asked about their experience of living with epilepsy, 77% of young people said that it had a significant impact on their mental wellbeing, including their thoughts, feelings and how they’re able to cope with everyday life.

Despite this, only 15% of paediatric epilepsy clinics offer mental health services that helped Bella so much. With your help, we plan to change that.

We are calling on UK healthcare leaders to integrate mental health screening and support into paediatric epilepsy care.

Every signature is a step towards providing children with epilepsy with the mental health support they need. Show your support by signing our petition and sharing it with others.

There's more to epilepsy than seizures.
Let's get on top of it.
#OnTopOfEpilepsy

Sign the petition. Together we can ensure that EVERY child with epilepsy has access to mental health support Bella's story Why. The reasons young people with epilepsy often experience mental health difficulties Donate today

Bella's story

Bella was diagnosed with epilepsy at the age of five. Frequent seizures meant she was often in hospital and isolated from her family, friends, and regular daily life. She struggled with her emotional health, feeling hopeless and angry.

"Bella missed so much time at school because of seizures, surgery and a lack of understanding about epilepsy. She felt isolated, despondent and angry and just wanted to be able to do the same things as other children, like playing round friends' houses."

Thankfully Bella was able to benefit from a clinical trial providing mental health screening and care for children with epilepsy. This helped identify the best way for Bella to be supported.

"The mental health support Bella received made a massive difference and restored her confidence. She met other children with epilepsy experiencing similar issues and now knows she’s not alone.

The therapist suggested strategies for us to use at home which not only helped Bella but also the whole family. I can't imagine what life would be like if we didn't get this support.

It gave Bella the confidence to tell us when something wasn’t right. Even though she can still feel angry, she’s now able to talk about her feelings so they don’t overwhelm her.

"Bella now has a more positive outlook and knows that she is going to have the life she wants."
- Bella's mum

We want every child to have access to mental health screening and support that helped Bella so much.

Support children with epilepsy by signing our petition and sharing it with others.

There's more to epilepsy than seizures.
Let's get on top of it.
#OnTopOfEpilepsy

If you have been affected by any of the issues raised in this story and feel you need support, there is help and advice available

Why

The reasons young people with epilepsy often experience mental health difficulties.

The underlying cause of epilepsy can contribute to mental health problems

Injury to the part of the brain that controls our moods is a common cause of epilepsy. This can lead to difficulties with emotions and mental wellbeing.

Hormone fluctuations, such as during puberty, can affect both an individual's mood and, or seizure frequency.

Feeling confused, sad, worried, irritable, frustrated, or angry in the hours and days leading up to and, or following a seizure is normal.

Sometimes antiseizure medications can contribute to symptoms of mental health problems

Epilepsy medications, known as anti-seizure medications, or ASMs, are important for managing the frequency and length of seizures. But for some people they can also positively and negatively affect mood.

ASMs work by affecting the brain cells and neurotransmitters in order to manage seizures. Therefore, they can also have an effect on our mood and mental wellbeing generally, and can also affect processing speed, leading to feeling frustrated and low.

Living day to day with epilepsy

Living with epilepsy is especially tough for children and young people. Navigating childhood, puberty, the teenage years and becoming a young adult with the peer pressure, academic expectations and life choices these years bring, can be a tricky experience for anyone. Living a young life through the lens of social media can also make things more difficult.

For a child or young person with epilepsy, there's the need to add in living with a condition that can be frightening and unpredictable, as well as often stigmatised. Seizures can happen at any time, including whilst at school, out with friends or when they are on their own. For some, this means a constant anxiety over personal safety and the knowledge that their education and future career may also be affected. It can be lonely too, if family members and friends simply don't understand.

Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy Charitable Trust.
Registered Charity number 311877 (England and Wales)

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