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Epilepsy carers neglect own health
Carers looking after people with epilepsy often neglect their own health needs according to research by leading epilepsy medical charity, Epilepsy Society.
The unpredictability of the condition and the fact that the need for care can change over time all contribute to the physical, mental and emotional stress of caring for someone with the UK’s most common serious neurological condition.
In a survey undertaken by Epilepsy Society to look specifically at the needs of carers, around a third said their own health had been affected. Caring tasks include looking after someone during and after a seizure, helping with seizure related injuries and help with transport.
Yet nearly half said they would not consider finding out about respite care to give themselves a break.
Speaking during Carers’ Week, Epilepsy Society’s communications manager Amanda Cleaver said: “It was interesting to note that many of the respondents used negative words such as ‘stressed’, tired’, ‘undervalued’ and ‘restricted’. Many comments reflected the very complex nature of caring for someone with epilepsy. There was also felt to be a lack of knowledge and understanding about epilepsy amongst 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.”
Epilepsy directly affects more than half a million people in the UK. Epilepsy is unpredictable. Seizures can happen spontaneously, out of the blue and without warning which means the need for care cannot be predicted. And whilst some care might simply 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.
Amanda Cleaver said: “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. Often the term carer is linked to people with disabilities, but the term disabled does not always easily fit with epilepsy.
“We are committed to giving carers a voice and support. We will keep the needs of carers firmly in sight when delivering on our vision of a full life for everyone affected by epilepsy.”