helpline 01494 601 400
enquiries 01494 601 300

epilepsy helpline

Call 01494 601 400

Our confidential helpline is for anyone in the UK affected by epilepsy.
Daytime: Monday, Tuesday, Thursday and Friday 9am - 4pm
Extended hours: Wednesday: 9am - 8pm

"I felt I wasn't alone"

Watch our video of Sarah Reid, mum of two, speaking about balancing the stresses of her epilepsy and being a mum.

About the epilepsy helpline

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.

"They are a friendly, listening ear"

 "I've needed the support of the helpline many times over the years. They are a friendly, listening ear and give me information I need to help my children understand my condition better." Sarah. 

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
  • the opportunity to speak to medically trained staff

Helpline Evaluation from August 2014 to July 2015

'good to know that support is only a phone call away'  (caller 36)

'I needed someone who had the time to listen to me and who knew about epilepsy; thank you so much' (caller 112)

The helpline is on continuous evaluation and survey are sent to callers who request information from us.

During the period of this current survey

  • we have spoken to 6,141 callers
  • Spent 1,665 hours listening time with our callers
  • Sent out 1,060 information packs, which represents a 11.32% response rate

Key findings

  • 81% gave positive comments about the way in which their call was handled
  • 51% said there was a significant change that had occurred as a result of their call to the Epilepsy Society helpline
  • 72% valued being given time to talk
  • 67% valued being given emotional support

Consideration of all the comments that were made, are being considered particulary around increasing the capacity of the helpline to ensure that callers can get through to us when they need to.

A day in the life of a helpline worker

We followed around one of our helpline workers for a day to find out the challenges and rewards of working on a specialist support helpline.

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 (opens new window). 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. 

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.