a full life for everyone affected by epilepsy

helpline 01494 601 400
switchboard 01494 601 300

epilepsy helpline

Our confidential helpline is for anyone in the UK affected by epilepsy.

Call: 01494 601 400 (national call rate)
Daytime: Monday, Tuesday, Thursday and Friday 9am - 4pm
Extended hours: Wednesday: 9am - 8pm

About the epilepsy helpline

Purple telephone with the receiver off the hook Epilepsy Society's specialist helpline is here to help anyone affected by epilepsy. We welcome calls from people with epilepsy, their families and friends, as well as professionals such as doctors, nurses, care workers, teachers and employers.

We give each caller as much time as they want to talk about matters that are important to them. We do not limit the length of calls. This means that sometimes our lines may be busy when you call. If you are unable to get through please keep trying. Tip: often the line is less busy in the afternoon.

All calls to the helpline are confidential. At all times, your identity will remain confidential. We do not pass on any details about you, only about general issues that might be raised in calls. No information from the helpline has any recognisable information about individual callers.

Sometimes particular issues may come to our attention because a number of callers have phoned with the same queries. Examples of this have included problems with supplies of medication or worries about benefits. In these cases we will research the issue and ensure that details are available on our website. We also feed this information into information resources, current campaigns or news articles.

What you can expect from the helpline

We are able to:

  • listen to you
  • give you information on other organisations if appropriate
  • give up to date information about epilepsy
  • offer you a call back service if you request it at the time of your call to us
  • offer a language line service and have been trained in text relay

We do not:

  • give advice
  • give any information about your call to anyone else
  • offer legal advice
  • send information to anyone else except the caller
  • give the opportunity to speak to medically trained staff

Helpline Evaluation form - January 2013 to end June 2014

We have been collecting information about callers' experiences since January 2013.  Over 1,200 response surveys have been sent to callers with 116 surveys being returned. During this period the helpline has taken 8,594 calls with an average 'contact' time of 17 minutes per call.

Key findings

  • 73.3% gave positive comments about the way in which their call was handled. This included being given time and space in a non-judgemental way for someone who was knowledgable and listened - 'It was truly excellent.  To have someone who listened was a tremendous help. I felt valued for the first time since my diagnosis two years ago'
  • 52.6% said that there was a significant change that occurred for them as a result of contacting the helpline service. This included feeling more confident; more in control; more knowledgeable; more relaxed; valued; less anxious; and felt listened to - 'The call to you has helped us as a family to understand how the condition will impact on our lives'
  • 62% valued being given time to talk - 'my call was handled sensitively and professionally and at no point did I feel 'time was an issue' '
  • 56% valued being offered emotional support - 'Amazing. Called more than once. You let me say the things that are difficult to say. Not always easy to talk to people about my epilepsy'.
  • 69.8% valued the service being confidential
  • 84.5%  valued the information we were able to offer during the call, and written information that was sent (responders all requested information from us, which has placed the emphasis on the value of information) - 'The person I spoke to was reassuring and able to answer my questions clearly'.  

Your comments on the helpline

Our helpline is one of our most important support services. We are continuing to collect feedback to help ensure it meets the needs of people affected by epilepsy.

If you would like to give us your comments on a call that you have had with us, please complete our helpline evaluation form.  Alternatively, call the helpline to request a form to be sent to you in the post.

Language line

You can speak to our Epilepsy helpline, through an interpreter, in over 170 different languages with Language Line Services (opens new window).

You will need to call our helpline number (01494 601 400) and speak to a helpline worker who will ask which language you need. If you do not have enough English to do this, you could ask someone else to make the call on your behalf.

  • The helpline worker will then take your telephone number and ask for your first name. They will ask you to put down the receiver. 
  • The Language Line operator will contact you within a few minutes and introduce the helpline worker.
  • You will be able to talk to the helpline worker, through the interpreter.

All language line interpreters have signed confidentiality agreements.

As we are a UK based charity, we are only able to offer this service to callers living in the UK.

For information in other languages, please view our Language Line poster (PDF, 799KB).

Quality standard

The helpline is a member of Helpline Partnership (opens new window) which merged with Telephone Helpline Association.  The helpline was awarded the quality standard mark in May 2012.

Helpline staff are trained to work within our policy and procedures.

Monitoring

Some calls may be recorded and monitored for training purposes.  This is an important part of maintaining quality on the helpline.  All calls that are recorded are kept confidential and will remain in the helpline office and then destroyed.

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