Epilepsy care needs are 'different'

Wednesday 8th February 2012

The needs of carers of people with epilepsy are being underestimated, according to a report by charity Epilepsy Society.

The report is the first to address how caring for someone with epilepsy is different to caring for people with other long-term conditions.

Epilepsy affects more than half a million people in the UK. While some care might involve keeping someone safe during and after a seizure, for others, where seizures are prolonged or repeated, the need for a carer to administer emergency medication might be urgent and crucial.

Graham Faulkner, chief executive of Buckinghamshire-based Epilepsy Society, said: "What became clear from our research is that epilepsy is a condition that poses unique challenges to carers.

"Our research suggests that carers are not supported with information at the point at which the individual is diagnosed - so they do not realise that the term carer might apply to them.

"In addition, there is felt to be a lack of knowledge and understanding about epilepsy among the services set up to help and support carers, such as social care and respite services. Carers need to feel confident that these services are providing appropriate and personalised expert care."

The research was funded through the Department of Health's Reaching Out To Carers Innovation Fund. Almost half of those who responded to Epilepsy Society's survey for carers said they 'would not consider' finding out about respite care to give themselves a break.

Anne Roberts, chief executive of Crossroads Care, which provides support services to carers, said: "The report makes a strong argument for epilepsy to be seen as a special case.

"Yes, all carers have to deal with changing situations on a daily basis, adapting their own lives to make sure they can provide the support that is needed. But for carers of those with epilepsy, this is even more pronounced, due to the highly unpredictable nature of the illness."

The Epilepsy Society runs a confidential helpline on 01494 601400 from Monday to Friday 10am to 4pm. For more information, visit http://www.epilepsysociety.org.uk.

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