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Needs of carers are being underestimated says epilepsy charity
The needs of carers of people with epilepsy are being completely underestimated according to a ground breaking report by leading charity Epilepsy Society.
The report, funded by the Department of Health, is the first to address why caring for someone with epilepsy is different to caring for people with other long term conditions.
Graham Faulkner, chief executive of Epilepsy Society said: “What became clear from our research is that epilepsy is a condition that poses unique challenges to carers.”
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.
Graham Faulkner 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.
“In addition there is 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.”
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.
Commenting on the report, Anne Roberts, chief executive of Crossroads Care 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.”
Epilepsy Society’s Graham Faulkner said: “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.”
Epilepsy Society’s carers’ project was funded by the Department of Health’s ‘Reaching Out to Carers Innovation Fund’. The main aims of the project were:
- To identify the experiences, needs and aspirations of people who care for someone with epilepsy, through engaging with carers directly
- To identify ways in which Epilepsy society can continue to best support people with epilepsy and their carers
- To give feedback about the Carers’ Strategy to the Department of Health, reflecting the views of carers of people with epilepsy
> See the full report of Epilepsy Society’s findings :