Project information

Epilepsy Society Helpline

The Helpline is a caller-led telephone service for people affected by epilepsy to talk about any issues surrounding the condition. It was started in 1990, when calls would come through from people often in a heightened emotional state and in need of support and information.

The project is ongoing.

Charity information

Epilepsy Society

Epilepsy Society logo
  • Need


    Much is still unknown about the causes, treatment and prevention of epilepsy, and it remains a highly stigmatised condition.

    People who have a diagnosis of epilepsy can find it difficult to accept because it can affect all aspects of their life. This can lead to feelings of isolation because they feel the people close to them do not fully understand. In addition, some people are unsure where to go to find information, particularly if they have specific questions.


    Our Helpline enables people from all over the world to speak confidentially to specially trained operators about their personal/emotional/practical issues surrounding epilepsy.

    Operators are also trained in counselling to help deal with callers who might be distressed.

    The service is caller-led so there are no time limitations, and callers can remain anonymous if they wish.

    Operators can guide callers to relevant information sources and send information out if requested.

  • Aims

    Aim 1

    To offer up to date information to callers.


    » To give appropriate and tailored information to the individual caller. Each helpline worker has responsibility for updated epilepsy knowledge.

    Staff constantly update their knowledge and send out information tailored to each caller's needs.

    Aim 2

    To offer callers time to talk and the chance to ask questions


    » Operating a caller led service gives the caller the total control over the length and content of their call. Staff use their counselling training.

    We regularly seek feedback from callers on the quality of the service they receive. As members of the Telephone Helpline Association we are assessed for quality every 3 years.

    Aim 3

    To offer emotional support by listening to callers


    » Helpline operators are trained in active listening skills, which comprises a large part of their role

    We ensure all Helpline operators have undergone the requisite 6 months of training, which includes active listening and counselling skills.

    Aim 4

    To keep everything confidential unless the law requires us to do otherwise.


    » We have a sound policy and procedures setting out the importance of confidentiality

    We abide by our confidentiality policies and procedures and update them regularly.

  • Impact


    More people affected by epilepsy will know to contact us. We will demonstrate this by numbers of calls and how much information we send out to callers. We will adapt our service from feedback to our 3-yearly evaluation. We will also aim to decrease the number of calls missed. If statistics and feedback from callers show a need, we will consider opening for additional hours. We will continue to adhere to best practice by remaining a member of the Telephone Helpline Association.


    It takes 6 months to train a Helpline worker. Whilst the worker is being trained, the staffing levels that we can operate on drop and hence more calls are missed. In addition, budget restrictions can mean a reduced service. If the need for the service drops, we may have to limit the Helpline.

    We deal with the risks by actively recruiting volunteer operators, and keeping senior management up to date with statistics and caller feedback.


    Our donor magazine, Response, often highlights stories and updates from the Helpline; our annual review covers progress made annually; we report back via emails and at events; our fundraising team frequently feeds back to individuals and charitable trusts; funders are regularly invited to visit.

  • Budget

    Budget - Project Cost: £128,097

    Loading graph....
      Amount Heading Description
      £115,889 Salaries Salaries, pension, NI
      £12,208 Training and membership Membership of THA and Language Line, training, mentoring, stationery
  • Background


    The beauty about our Helpline is that callers are not confined to any particular location. The Helpline operators are situated at our headquarters in Chalfont but phone calls come in from all over the world. We also subscribe to Language Line, which enables us to communicate with people whose first language is not English.


    Anyone affected by epilepsy can benefit from our Helpline. This includes people with epilepsy, their families, friends and carers, as well as employers, teachers and medical professionals.

  • Why Us?

    Why Us?

    Epilepsy Society is now 120 years old and is world renowned for its expertise in the field of epilepsy. Our Helpline has been operating for over 20 years and the increasing number of calls we receive year on year shows that we are a trusted and valuable service. We send out 400 surveys every 3 years and adapt the Helpline according to the feedback. Our membership with the Telephone Helpline Association means that we adhere to quality standards, and are assesed regularly to ensure we comply.

    Read more about the Charity running this project.


    Christine Brock

    Chris is the Helpline Team Leader and has responsibility for the smooth running of the service and the team, including their training needs.

    The Helpline Team

    Without the dedication and commitment of our Helpline Operators undergoing training and manning the phones, the service would simply not exist.

    Bridget Gardiner

    As Director of Fundraising and Marketing, Bridget has overall control for the budget, maintenance and development of the Helpline.


...will pay for training for a Helpline operator

You have been so amazing, you don't know what it's meant to be able to pick up the phone and talk to you, whilst I have been dealing with all of this

Helpline caller