Online Support Group FAQ


How do the groups work?

The online support groups work in a similar way to our face to face support groups throughout the country, except insofar as they are online. The service aims to bring people together to talk, share experiences and exchange information within a confidential, non-judgemental environment.

How are the groups facilitated?

Currently, groups are facilitated by one or more Brainwave service staff members. The facilitators will ensure that all participants can benefit from the sessions and make sure that the ground rules are followed.

Are the groups confidential?

The service is confidential within the normal limits of confidentiality. This means that confidentiality is guaranteed except in the following circumstances:

  • Where a person has immediate plans to self harm or plans to harm others.
  • Where there is information that a child is at risk of, or has in the past been subjected to, harm/ abuse/ neglect.

Our confidentiality policy is in line with best practice, and the Children First guidelines.

Who can take part in the Online support groups?

To start with, sessions will be for people with epilepsy living anywhere in the country over the age of 18 only (although we hope to add groups for family members and for teenagers with epilepsy in future).

How do I sign up?

Visit this page to register, enter your details and follow the on-screen instructions. You will have to confirm your email address by clicking on a link that we'll email you. If you have not received this email within a few minutes, please check your Spam or Junk Mail folder. Once registered, you can then sign in to the service using the login tab.

How do I log in?

Go to http://support.epilepsy.ie and select the tab marked login (if this does not happen automatically). Enter the username and password you selected when you signed up and click on the Login button. If you have not yet registered for the service, you'll need to sign up.

Why do you need my email address?

We ask you to provide (and confirm) a valid email address so that we can tell you when groups are on or if times have been changed at short notice. That way, you don't need to check the website each week. Your address is not visible to either facilitators or other users who will only know you only by a username of your own choosing. Only the site administrator can see email addresses, this is password-protected and access is tightly controlled. See the Privacy Policy for more information.

How do I know when groups will be on?

Once you've signed up, we'll email you every time we set up a new session. We'll also post details here on epilepsy.ie. We'll also send a reminder on the day of the session. Please note that because the emails are automatically sent to you, they may end up in your spam/ junk folder, so please keep an eye on this.

How many people can take part?

Initially we are limiting group size to 10 participants per session. This may be increased slightly after a few months, but groups will not have more than 15 people. Limits are set to ensure that as many people as possible can benefit from each group. Once the room is full, other participants will not be able to enter.

What do I need in order to access this service?

You will need a computer with internet access.

How do I attend an online support group?

If you have received a meeting reminder from us by email, and would like to attend the support group, just log in to http://support.epilepsy.ie a few minutes before it is due to start. You'll see the session listed in the Meeting Rooms tab, along with a line tell you its current status. For you to enter the meeting room, a facilitator will have to have opened the room and started the meeting. The name of the room will have (Enter) after it if it is open to you and the description will tell you that the meeting is in session. If you try to enter a room that is not yet open, you will get a message to that effect. Wait a short while and click on the Meeting Rooms again tab to refresh the page. Once the room is open, just click on the name of the room to join the session.

Why did a meeting I saw listed not take place?

Occasionally we will set up test meetings to try out improvements to the system or for training purposes. These may be visible from within support.epilepsy.ie but will not be listed here and you will not be emailed about them.

What are the rules for the online support group service?

The right to participate in Epilepsy Ireland online support groups is subject to adherence of the following meeting ground rules:

1. Respect: Participants must show respect and courtesy for all other participants and their opinions. We ask that participants not to dominate the conversation to the detriment of others. However, there is no obligation on any participant to contribute to the group or to share details of their own story they are not comfortable with. Please also bear in mind that epilepsy is a very individual condition and what works well for one person may not work well for another.

2. Confidentiality (within the normal limits). Participants agree to observe confidentiality in relation to what is discussed during a session. Please do not discuss any of the participants or divulge details of individual cases outside of the session.

3. Timeliness: Participants should arrive on time and stay for the full duration of the session. If you need to leave the meeting, please let us know before you log off.

4. Identifiable Information: Doctors, other health professionals and hospitals should not be mentioned by name.

5. Medications: The Online Support Groups are not itended for medical advice. Please do not offer advice to other participants on medication or treatment. Likewise, do not consider any changes to your medical treatment based on conversations within the group. Always consult your doctor about any medical issues you are concerned about.

6. Privacy: Please respect the privacy of others. Do not request diagnosis, medication or personal contact details from another participant.

7. Harrasment: We do not tolerate harassment of any kind.  This includes verbal abuse of another participant, flaming, trolling, spamming, advertisements of any form, or use of malicious programs including but not limited to IRC clients, worms, bots scripts, Trojan horses or any other form of virus. We reserve the right to report people who initiate or participate in any such activity to their ISP, and terminate their access to the service indefinitely.

If you breach these rules, ignore warnings and/or behave in a way that the facilitators think is unacceptable, you can be ejected from the room and/or banned from the service completely. Further information can be found in the Terms of Service.

What do I do if I forget my password?

If you cannot remember your password, just click on the Forgotten your password? link in the login area. We will then send an email with details on how to log in to the address you signed up with.

How do I add a picture to my account?

You can add a photo of yourself (or an image to represent you) to your account if you wish. When logged in to the service, select the Profile tab. You will then have the option of uploading an image from your own computer which should be 45 pixels by 45 pixels in size to display correctly. Any image you upload will be shown beside your name in the user list of any meetings you attend. You do not have to upload a profile image. You should not use images that are copyrighted by others.

Are the sessions recorded?

Transcripts of the online meetings are recorded archived securely for review purposes by Epilepsy Ireland facilitators and management and to aid in preparation for subsequent meetings.  They will be held for 6 months, after which time they will be deleted. Your identity or email details cannot be sourced from these transcripts unless the content is deemed outside the limits of confidentiality.  In the interests of security and confidentiality, participants must not print or otherwise keep a written record of the conversation of a session

Does Epilepsy Ireland do face to face groups?

Yes, check out our Regional News section for upcoming events in your area.

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