Innovative Epilepsy Community Relaunched, UK

Main Category: Epilepsy
Article Date: 28 Oct 2005 - 19:00 PDT

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Epilepsy Action's innovative online community has been relaunched to offer a more accessible and user-friendly service to the 456,000 people in the UK with epilepsy.

http://www.forum4e.com has been built for Epilepsy Action by etribesR, who will also host the new community for people with epilepsy. The community builds on the success of its predecessor, BEA-Connect, which 2,000 users have joined since its launch in 1999.

etribesR is an award-winning internet solutions company which specialises in creating online communities for voluntary, community and public sector organisations using its communitybuilderR solution. Mark Morton, web manager at Epilepsy Action, comments: "We chose etribes as the service provider for this project because it is a well-established name in a competitive field and the company has an impressive range of clients."

The aim of forum4e is to provide a safe and secure environment for people with epilepsy to discuss their condition and how to live with it. Membership of the community is free and only people with epilepsy can become members, although carers can join on behalf of people with epilepsy who are unable to use a computer themselves.

The launch of forum4e coincides with the publication of a study by University College London, which found that interactive websites can help people with long-term health conditions, by improving the knowledge of users and helping them to feel more socially supported (i).

An exciting new feature of forum4e is an area for web logs ('blogs'), where members can post their thoughts on whatever topic they want or link to external blogs that they may have. The internal blogs can be used as an online diary for recording thoughts or medication history, helping members to create an 'at-a-glance' picture of their epilepsy.

Forum4e's online community also offers a live chat facility, enabling members to chat to other people anywhere in the world. Another way of talking to other people through the community is the forums, which allow people to read and reply to messages posted by other people or to start their own topic of conversation. In addition, forum4e members can send private messages between each other using the internal email system.

Over the years, Epilepsy Action's online community has been a valuable lifeline for hundreds of people with epilepsy. One user comments: "My daughter has had epilepsy since an accident where she had a head injury, when she was two weeks old. We had no contact with anyone else with epilepsy, no support, or even someone to talk to who understood. She is now four and we recently joined BEA-Connect, which has been wonderful to meet people who are generous with their time, experiences and help. At last I can tell someone about what is happening to my daughter and they don't change the subject. My only regret is that I took so long to find out about this site. We still have worries and difficult times but now I know there are other people who have been through it already and that my daughter is not so different after all."

Forum4e is quickly proving to be incredibly popular and has been welcomed as a home for existing and new community members alike, confirming the community's position as a cornerstone of Epilepsy Action's services. One user has commented: ".just connected for 1st time - tremendous system and improvement, who burnt all the midnight oil?" Another user noted: "this new site is really something!"

(i) The Cochrane Database of Systematic Reviews 2005 Issue 4 Copyright 2005 The Cochrane Collection. Published by John Wiley & Sons, Ltd. Interactive Health Communication Applications for people with chronic disease
Murray E, Burns J, See Tai S, Lai R, Nazareth I.

Epilepsy can affect anybody, at any age and from any walk of life. Epilepsy Action is the UK's largest member-led epilepsy organisation, with around 18,000 members. As well as campaigning to improve epilepsy services and raise awareness of the condition, we offer assistance to local people in a number of ways including a national network of branches, accredited volunteers, regular regional conferences, a Freephone Epilepsy Helpline (0808 800 5050) and website http://www.epilepsy.org.uk.

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