Coffee and chat groups across the UK

Based on current guidance all local branch and group meetings and activities have been suspended. There will be no meetings until further notice. We realise that many people rely on their group meetings and activities for information and support. Many of our groups have therefore started meeting virtually using zoom. To find out if your local group is meeting virtually please contact lso@epilepsy.org.uk or call 0113 210 8899.

If there is not a group in your area then please join one of our virtual groups which are open to anyone in the UK. They are a great way of connecting with others who have experiences of epilepsy, in a safe and relaxed environment.

What can you expect?

Coffee and chat

  • A warm welcome from our volunteers – you can spot them easily from the ‘coffee and chat group’ table sign.
  • Space to listen – we try to choose quiet venues where the group can hear each other without being disturbed by others.
  • Space to talk - ask questions or share your story if you are comfortable and ready to do so.
  • Understanding – everyone’s epilepsy is different but group members will often have had similar experiences
  • Advice and information – group support each other by sharing their experiences and advising how Epilepsy Action can help further.
  • A chance to make friends – often people who attend the groups go on to become good friends.

Feel free to just drop in for one or two meetings or become a regular member of the group.

Where can you find a group?

Coffee and chat search

  • We have over 100 groups across England, Wales and Northern Ireland.
  • Groups meet in a variety of venues from coffee shops to community rooms.
  • They are all in locations with good public transport links. The buildings themselves are checked to ensure they are accessible for all.
  • Search our map to find your nearest group.
  • Just turn up on the day or phone the local volunteer or local manager to check arrangements

What if there isn’t a group near me?

  • Our Freephone Epilepsy Action Helpline gives you an opportunity to talk to a trained adviser about living with epilepsy and get your questions answered.
  • Forum4E - free online community for people with epilepsy and carers of people with epilepsy.
  • There is lots of advice and information on our website, Facebook page and YouTube channel.
  • Take an online course to help you manage your own epilepsy.
  • Keep in touch to hear about any future events in your area.
  • Consider applying to become a volunteer to start a new group or get involved in other local activities.

"It has been a safe haven to discuss the undiscussable"

"The group has helped me deal with and manage the different side effects of the medication I'm on."

"The group certainly makes us realise that life goes on"

Comments: read the 10 comments or add yours

Comments

My 25 year old Son Sam had his first seizure 15 months ago, after all that time of medication his seizures are worse and now he can have 2 or 3 back to back. His anger is destroying him and his emotions are all over the place. He’s a bricklayer used to earning £1000 a week just got made supervisor and bang out of the blue a seizure! I desperately need some advice or someone to talk to him as the NHS seems very vague almost avoiding when questions are asked. As a Dad with a disability myself am feeling that I’m letting my Son down cus Dads always mend things and I feel helpless. Just to talk to someone with compassion and understanding would so much help. Please help, thank you, Mark Venn Sams dad

Submitted by Mark Vrnn

Hi Mark – It sounds as though this is a tough time for you and talking things through can really help. You’d be welcome to call and speak to us at the Epilepsy Action Helpline 0n 0808 800 5050. Its free to phone and its confidential. We are open 8.30 – 8pm Monday to Thursday, 8.30am to 4.30pm Friday and 10am – 4pm Saturday.

Regards

Mags

Epilepsy Action Helpline Team

Submitted by Mags - Epilepsy...

Hi, just wondered if there is a coffee and support group anywhere in Maidstone or the Kent area please

Submitted by Isobel Butcher

Hi Isobel, thanks for your comments.

Unfortunately, it doesn't look like there is a group in that area at the moment. If you'd be interested in setting one up, or finding out about any events taking place in the Kent area, you could email our local services officers at lso@epilepsy.org.uk.

All the best,

Josh - Epilepsy Action

Submitted by Josh - Epilepsy...

Not good at writing so really just want to fined out if there is some where in Peterborough I can go?

Submitted by Danny

On behalf of a brother who also has learning disability will there be an option for group work or events he can participate in which is not virtual.

Submitted by Farhan

Hi Farhan,

Thank you for your message. We understand how important face-to-face meetings can be for people and we are working hard to resume our face-to-face groups.

However, these activities will not be resuming until September at the earliest, whilst we assess how the end of restrictions impacts on Covid and we plan for a safe return to face-to-face groups, keeping the health and wellbeing of our staff, volunteers, and service users at the forefront of our planning.

You can sign up to hear from your local group, including about their virtual groups and when they start meeting face-to-face again, by filling in our keep in touch form: https://www.epilepsy.org.uk/services/keep-in-touch-data-protection/local-updates

Submitted by Clare - Epileps...

Hi I had a VNS implant operation done 7 years ago it has caused terriable problems with my voice so on July 5th I had it switched off. Since then i have had five seizures instead of the 10 to 12 I was having a month. Any explanations why please? Have you got patients whose seizures increased once they had a VNS operation.

Submitted by Julie Ann White
That does sound curious, but good news. I wonder if your voice problems were causing you to feel stressed? Maybe your stress levels have gone down, resulting in fewer seizures. I do hope it lasts for you.
Regards
Cherry
Epilepsy Action helpline team
Submitted by Cherry - Epilep...