We exist to improve the lives
of everyone affected by epilepsy


Comments and compliments

Epilepsy Action wants to provide the best service it can. To help us do this, we value your feedback and we are committed to using your comments to develop and improve the way we work.

If you have a suggestion or a compliment, please share it with us. It is good to know when things work well, and suggestions for improvement are always welcome.

Using your positive feedback to support our vital work

Sometimes, we may use comments in our publications and grant applications, to tell people about epilepsy and the many good things our work achieves. We always make sure quotes are anonymous, to protect the identity of our supporters. However, sometimes it is useful to give a name and, if we want to do this, we will always contact you to ask your permission.

Your contact details will never be given to anyone outside Epilepsy Action, unless we are required to under the Data Protection Act.

You may wish to use the our online form or write, email or phone with your comments.

Download service user's guide to feedback booklet

Comments: read the 2 comments or add yours


This is to thank Cathy/Kathy for her support and advice this afternoon. She had great empathy and knowledge about epilepsy. Her understanding of the need for independence and putting measures in to aim towards this really lifted me out of the doldrums. Thank you for listening.

Submitted by Helen Kenny on

Hello, this is feedback on a call i had to make to Epilepsy action this morning. Scenario: I'd been to my GP for another problem with my body and as a result was in pain, needed stronger pain killers than paracetamol as it didn't work and pain was making my partial seizures worse which can and do lead to a full seizure. I got home and realised all electric sockets in my front room were not working, was a bit panicky as my fridge/freezer was melting down with all food in it defrosting- eek! Panic and worry are main triggers for my seizures too, i was trying to figure out if it was the freezer itself and my only other plug extension had broken too, so had to connect it to the one in my bedroom through a few doors, pulling a heavy freezer was not what i needed whilst in pain/with partial seizures but i had to do it. I also needed stronger painkillers. The pharmacist said they'd be ok but as I'd just started perampanel with a bad reputation for side effects along side my Lamotrigine I didn't want to mess it up and also needed the opinion of a specialist/person who coul;d think clearly also properly knew about epilepsy. I tried to call my epilepsy nurse but the line was just beeping, saying the number is not working. Called epilepsy action and the lady, sorry i've forgotten her name, (was standing in for Diane on lunch), was really kind, calm and down-to-earth, she looked up the medical info on if the drugs could be combined and was really efficient, in a situation without Epilepsy action i'd likely have had a seizure as i needed to go to bed and shut my eyes after an unexpectedly stressful morning. Fantastic people volunteer at Epilepsy action, please keep them a working charity, an essential part of a fantastic network that all my neurological doctors/nurses know about and the epilepsy forum changed part of my life for the better when I was made aware of it. Thanks infinitely, Anna, Southampton. 17/8/2017

Submitted by Anna G Marsh on

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