Quarriers conduct survey for people living with epilepsy
People living with epilepsy fear leaving the house in case they have a seizure in public, according to a UK-wide survey – commissioned by charity Quarriers and published today (Wednesday 6 June) – which gives some sobering insights in to the discrimination faced by those living with one of the most common neurological conditions.
The ComRes poll, one of the largest ever undertaken of people living with epilepsy in the UK, found more than two-thirds (69 per cent) of the 505 people interviewed admit they worry what members of the public would say or do if they had a seizure.
Epilepsy currently affects more than 600,000 people in the UK, making it one of the most common neurological conditions. There are as many as 50 types of epilepsy.
A third (33 per cent) of those surveyed in the Quarriers/ComRes poll admit concern over having a seizure in public led to anxiety about whether to leave the house.
The reasons for this climate of fear can be attributed to attitudes towards those living with epilepsy in the UK. Just over half of respondents (55 per cent) believe discrimination towards people with epilepsy is widespread; more than one in four say they have been ignored (30 per cent) or laughed at (28 per cent) during or as a result of having a seizure.
A quarter (26 per cent) revealed they had been accused of faking or exaggerating a seizure, while some – seven per cent – have even been filmed or photographed when at their most vulnerable.
Nearly all those polled (94 per cent) feel that most people don’t know a lot about epilepsy – with more than three quarters (77 per cent) claiming the general public make incorrect assumptions about how their epilepsy affects them.
Other key findings from the ComRes survey include:
• More than three-quarters (79 per cent) of those living with the condition feel dependent on their medication;
• Over seven in 10 (72 per cent) respondents say the condition has had an impact on their career progression and choices;
• Sixty per cent say epilepsy has had an impact on relationships with friends and family while 54 per cent say it has affected intimate or sexual relationships;
• Fifty two per cent feel others treated them differently after they had revealed they suffered from the condition;
• Almost half of those polled (47 per cent) reveal they have sustained a serious injury as a result of having a seizure;
• More than two-fifths (43 per cent) avoid telling people they have epilepsy
Gerard Gahagan, head of clinical services at Quarriers Scottish Epilepsy Centre, admits the findings of the survey make for sober reading and has called for more to be done to stop the stigma associated with the condition.
Mr Gahagan says: “The survey results confirm attitudes towards people living with epilepsy in the UK have not changed for centuries. It appears we are stuck in the dark ages when it comes to how we treat those who suffer from one of the most common neurological conditions. These attitudes simply have to change – and fast.
“Around one in 100 people in the UK suffer from epilepsy, so there is a high probability perpetrators of the discrimination could actually have a relative or friend who is avoiding revealing they live with the condition because they fear what the reaction will be.
“At Quarriers we believe people living with epilepsy should be able to go about their daily lives without fear of having a seizure in public or worrying about what others may say or do.”
Quarriers runs the Scottish Epilepsy Centre (SEC), an independent hospital based in Quarrier’s Village just outside Glasgow, which assesses and diagnoses more than 100 people each year living with very complex forms of epilepsy and some who have been misdiagnosed.
Next year, Quarriers will open a new, state-of-the-art £6.4 million epilepsy centre in Govan, Glasgow.
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