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22 Jun 2012
Graham Faulkner, chief executive, Epilepsy Society

Taking care of carers

It came as no surprise to me to read this week that unpaid carers are sacrificing their own health to look after a loved one. It substantiates the evidence we at Epilepsy Society have also gathered, that carers looking after people with epilepsy often neglect their own health needs.

Graham FaulknerGiven there are six million unpaid carers in the UK today - one in eight people – this is a significant section of society whose health needs are potentially at risk.

In this week’s survey, released to coincide with Carers Week, 83% of the 3,400 respondents said they had suffered physical health problems and 87% said caring had been detrimental to their mental health.

This reflects our own findings earlier this year when we published the outcome of a project funded by the Department of Health’s Reaching out to Carers Innovation Fund. The project gave us a unique opportunity to dedicate time and resources to seeking the views and experiences of carers of people with epilepsy. It allowed us to focus on identifying the information and support needs of carers, and understand why caring for someone with epilepsy is different to caring for someone with another condition.

What became clear from our research is that epilepsy, which directly affects more than half a million people in the UK, is a condition that poses unique challenges to carers. Seizures can happen spontaneously, out of the blue and without warning, which means the need for care cannot be predicted. Often the term carer is linked to people with disabilities, but the term disabled does not easily fit with epilepsy.

People with epilepsy may also have other conditions, involving additional care needs. Seizures can be infrequent or unwitnessed by others, so epilepsy can be a “hidden” condition. This means other people might not see the need for care. Some local authorities providing social services, for example, may not always recognise epilepsy as a condition that has particular care needs. In addition, living with epilepsy can have a psychological impact - stress, depression, mood changes or frustration - which may also affect their carer.

The care needs of someone with epilepsy can be a wide spectrum from needing a little help now and again to having full time intense or complex care needs. Support may include:

  • keeping them safe during a seizure
  • calling for medical help, or giving first aid or emergency medication
  • helping with their routine of taking anti-epileptic drugs
  • acting as a representative or advocate for the person, with their doctors or others involved in their care
  • joining in with activities that might pose a safety risk if they were to have a seizure, such as swimming

Epilepsy Society is committed to giving carers a voice and support; carers need to feel confident that these services are providing appropriate and personalised expert care.
Almost half those who responded to our survey said they would not consider finding out about respite care to give themselves a break. This is no doubt linked to the fact that respondents felt there was 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 Week has underlined our commitment to keep the needs of carers firmly in sight when delivering on our vision of a full life for everyone affected by epilepsy.

* Epilepsy Society has a dedicated carers section on its website.

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