Do you see any epilepsy specialist nurse? - Epilepsy Action
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attend local epiepsy clinic run by Doctors
I didn't even know epilepsy nurses existed, my gp is very clued up on it thankfully - i haven't even seen a neurologist, it was diagnosed by a general medicine doctor and he wasn't much use - i suppose he had a fair idea it may be epilepsy as i had generalised seizures as a child but he never made a firm diagnosis, just left me on medication which didn't work and more or less said to put up with it, and it wasn't dangerous - i've since found out this is not the case and it has got worse as a result!!!!! thankfully my gp is prepared to research and took a long time deciding on what medication to put me on
I have been commenting about this to my doctor and neurologist for years now - I have no-one to talk to about this lifelong condition. Complex partial seizures every few days. Never mind, as Noah and the Whale's song goes L.I.F.E.G.O.E.S.O.N........
Hi Darlington
I’m sorry you’ve never had the opportunity to talk to an epilepsy nurse, or anyone else for that matter. Epilepsy Action would eventually like an epilepsy nurse to be available to all people diagnosed with epilepsy, no matter where they live. If you’d like me to see if there is an epilepsy nurse in your area, please email me at helpline@epilepsy.org.uk with the name of your town or which hospital you see your epilepsy specialist at.
Apart from epilepsy nurses, some people find it helpful to talk to other with epilepsy. For this reason we have local groups. Most hold regular meetings and offer a mixture of social events, informative talks, discussions and fundraising events. Either use our website to find your local meeting (epilepsy.org.uk/services/br... or email me with details of where you live.
Finally, as you are still experience seizures, I would like to check you are still seeing a neurologist to discuss the possible reason? If you’re not under a neurologist, you will need to ask your GP to refer you. Preferably to someone with a specialist interest in epilepsy, as there are many neurological conditions. epilepsy.org.uk/info/treatm...
Regards
Diane Wallace
Advice and Information Team
I used to have an Epilepsy nurse but disappered when my seizures bacame controlled ...however they came back so I was sent back to neuro and medication increased etc. was told I would be put in contact with an Epilepsy nurse but have never had any further contact since being transferred to GP care unless neuro care is required again . I continue on occasion to have absence seizures but my diagnosis is frontal lobe grand mal seizures , but as I say havnt had any like that since meds increased .
Spots1
Thank you for sharing your experience.
If you did need to talk to an epilepsy nurse, if there is one about your hospital, you can generally self refer to them.
If you wish to know if there is a nurse please contact our helpline team with which hospital you attend.
You can do this on here or email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.
Regards
Diane Wallace
Advice and Information Team
Didn't even know exist and been left to get on with it for over 25yrs. No Neurologist after first seen all that time ago, here's a prescription and you are discharged.
Sorry to hear this. If you are still having seizure or would like to discuss your epilepsy treatment with one of our advisors, please feel free to phone our helpline 0808 800 5050.
If you’d like a care plan template please email helpline@epilepsy.org.uk or phone our freephone helpline 0808 800 5050 to order one. They are free of charge.
Regards
Diane Wallace
Advice and Information Team
I am still having seizures, lost my job because of it, have been thrown out of two churches, a choir etc, had my life ruined and now see no hope or feel that there is any one who cares
Next time you post this information please give their hours. I just rang them, 4:15pm, not knowing their hours, only to find them closed now until Monday. I put the phone down, burst into tears and smashed my head against the wall in frustration. Once more hope kindled then extinguished. Not going to bother again
Hi Tazzy
It’s tough when people aren’t there when you really need them isn’t it. But I would encourage you to try again. Next week most people are likely to be back in work after summer holidays. And it is usually necessary to leave a message for the epilepsy nurses as they are often in clinics. But if you do that, I’m sure someone will ring you back as soon as they are able to.
Sorry we can’t give individual opening times. This is because we are a national helpline and that would be way more information that we could collect and keep up–to-date.
I hope things improve for you soon.
Cherry
Advice and Information Team
Moderation team
