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19 September 2015

Caring about carers

Epilepsy Society  has underlined the unique challenges faced by carers in supporting people with epilepsy which is both an invisible and unpredictable condition.

'Planning for time off to be with someone who has had a seizure can be  impossible as you never know when a seizure is likely to happen. At the same time, the invisible nature of epilepsy means that some people call into question whether the person they are caring for really has a condition,' said Angela Geer, chief executive at the leading epilepsy medical research charity.

'Carers of people with epilepsy often feel unsupported by services and by employers who may have limited understanding of the condition. This can lead to depression and health issues for the carer which can of course impact further on the person they are supporting.

'At Epilepsy Society we support carers through our helpline and our website. Through both channels carers are able to access information about benefits, safety, first aid and problems with medication. They are also able to gain emotional support though our helpline team who understand the wider implications of epilepsy for family and friends.'

Survey about carers

Angela Geer's comments follow the publication of a survey of 57,400 carers for the Health and Social Care Information Centre (HSCIC) which found that four out of ten carers spend more than 100 hours a week looking after their loved ones, leaving some feeling isolated and lacking practical help.

Fifteen per cent of carers said they were unable to do anything they valued or enjoyed due to their responsibilities. While 40 per cent of carers said they felt they had encouragement and support, 17 per cent felt they had none. Fifteen per cent of carers neglected themselves in terms of eating or getting enough sleep and more than a quarter of those asked said they were not always able to look after themselves.

Over the last 12 months, 15 per cent of carers were extremely satisfied with support and services they receive, while 26 per cent were very satisfied and 33 per cent were quite satisfied. Twelve per cent, however, expressed levels of dissatisfaction.

Angela Geer continued: 'The role that carers play is huge.  They can be vital for the well being of those people whose epilepsy means they need extra support in looking after themselves. If carers are not supported and neglect their own health then this can impact on the health of the person with epilepsy and may result in an unplanned hospital admission.'

Epilepsy Society has a special section of our website dedicated to carers