Patient Initiated Follow Up: Hi just... - Epilepsy Action

Epilepsy Action

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Patient Initiated Follow Up

Otto11 profile image
4 Replies

Hi just wondering if anyone has been given this. My Neurologist said that if I didn’t contact them during the next 12 months I would be discharged. I’m somewhat concerned as my GP knows nothing about Epilepsy having told me for 4 years my episodes were depression. Because of him it delayed my diagnosis. Will I still have access to my Epilepsy nurse?

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wxy123 profile image
wxy123

I use PIFU for a different condition and it has proved very useful as I make appointments to avoid holidays and can lengthen the time between appointments as necessary. Perhaps you should contact your epilepsy nurse and see what they say.

Otto11 profile image
Otto11 in reply towxy123

Thanks. I’m just a bit worried that what if I don’t need them for next 12 months & im discharged then I have a question or seizure & need to be back in the system. I understand the concept & think it’s a good idea tbh as over the years I’ve had unnecessary appointments then when you need one you don’t have one for another 3 months. I think that’s a good suggestion to speak with my nurse. Thank you.

in reply toOtto11

Have to admit I'd simply "use the system". The actual appointment may well be a waste of time, but there's always the chance that an appointment might actually be needed at some stage. I'd book one in prior to the end of a 12 month period and go through the process - it's a bit like calling in for a FOC Optical or Dental review, may always be helpful at a later date (Nb. I've got a token visit booked in for end of summer)-

Otto11 profile image
Otto11 in reply to

Thanks. How can you book in for an appointment later on. Surely if I need an appointment it would be at that time. Isn’t that how it works? Bit confused again. I get the just of what you’re saying but how can I book a n future appointment for say 3 months time? Is that possible?

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