I am likely posting this out of frustration. I had a telephone review appointment with my consultant recently. It should have been in November last year but appointments line informed me previously 'add 9 months to his waiting list' which I now do. So it's been a year and 4 months since review. Why am I accepting this. Not only that, my appointments are phone reviews, I haven't seen him in person since 2019. How is this acceptable also? His secretary once said to me unless your condition has drastically changed you will have to make do with the phone appointment. Any time I have needed to get in touch with him, his secretary never answers the phone, it goes to answering service and I never got a response. She must be part time. One of the calls I was making was in response to a letter he sent me to confirm medication dosage with his secretary. In our recent appointment he obviously didn't get the clarification from the secretary. I informed him I rang your secretary, it went to voicemail, so I left one.
When confirming my next review appointment, he said 6 months so I said I will add another year onto that. He then went onto say well I do have a caseload of i think it was either 2000 or 3000 patients to go through. I angrily suggest he discharge me if he had too much workload. He disagreed with this and said no he will keep me 'on his books'.
I felt bad for being abrupt and forward but why are we accepting such lengthy gaps between reviews? Still phone call apps and secretaries letting their calls go to voice mail. I now know I have to wait and hope within the next year and a bit my seizures disappear to see if he will let me drive. Even though I have only had 3 focal seizures in 18 months. Thats so much time being wasted. 🙄
Any body else in the same position in terms of review appointments etc?
Thank you
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RR25
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Hmm......I was diagnosed in 2018, by some bloke in an ad hoc phone call with an A & E Department. Said bloke (Nb. I've heard he's a consultant), has never actually spoken to me, obviously he's never actually met me.
Had an review appointment with Neurology, back in March this year, Think it was put back to sometime in April '24. Then October '24, then Octobers '24 date changed again, was brought forward to an appointment in September '24, had another one apparently booked in for September '24. Has now been put off until 2025, originally it was going to be in March '25, but a week or after that notification, it's been put off until sometime in April 2025.
Can't say I'm too bothered, have found the NHS Neurological services locally to be a joke, have no knowledge if that's due to an absolute absence of resources or whether the staff working locally, are a waste of space (Nb. Emergency Services have been incredible). As an individual from a mildly science based background (BSc), have found it most effective to collate and review data, both in respect to the seizures I have and background reading.
Suppose it's that fact that the Dr's and NHS have a dangerous level of statutory powers in respect to those under their control (AKA patients), which I've found to be most disturbing. I've suffered harm and do keep their actions under tight review
Yikes, and I thought my neurology care was bad. Are you on medication? Do you not require medication review?I work for the health service too so I think that's what annoys me more because I see great delivery of care in certain departments.
I think the neurology services were I am from are currently under review.
Thanks, have been trialling medication since June '21. Initial medication was ineffective, so forced through a change (Nb. Took approx. 7pcm for NHS to accept change was necessary). Was fairly obvious, as medication being used was utterly ineffective.
Hope you sort yours', resolving one's own seizures is all that really matters (Nb. Would be unrealistic to anticipate GP's or whoever, having any knowledge). Have found parts of the NHS incredible, but would be unrealistic to anticipate other parts of a state monopoly, to be anything other than appalling.
First seizure in 2020. Another 2 after that. I was diagnosed over the phone in 2023 and given medication.
I haven’t had any sort of review. I haven’t seen any doctor or neurologist. Nobody’s actually told me what kind of epilepsy I have. I agree it’s very frustrating. I haven’t really questioned it because the medication is working and my life is good.
It sounds to me like you have been lost in the system somewhere. Especially with no consultant etc. Did they even give you a number for an epilepsy team incase your condition changed?
I am lucky too in that I can still work, travel, make the most of life etc. I am grateful that way. It is just waiting times for reviews are far too long. Then when you do want to touch base with the consultant about something, their secretaries don't answer. (an issue not applicable for the epilepsy nurse) so it will have to wait till review.
Yea 100%, the service needs to provide more support, its definitely lacking.
It’s difficult for us to hear when people with epilepsy experience problems with their medical care. Lengthy waiting times, appointments been changes, reviews delayed or not happening, these are all issues we need to address.
Epilepsy Action is working with MPs, Healthcare professionals and other charities to highlight the issues and problems with the current provision of epilepsy services. You can find out more on our website Campaigning for better services - epilepsy.org.uk/involved/ca...
If you would like to share your experience with us please email campaigns@epilepsy.org.uk (you could just copy and paste what you have shared on here into the email).
We are always looking for more MPs to support our work, so please do contact your MP to ask them to support improvements to epilepsy services. You can find out who your MP is here: members.parliament.uk/FindY...
If we can be of any more help, please feel free to contact us directly, either by email helpline@epilepsy.org.uk, live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm
Many thanks for your reply Epilepsy Action.It is just frustrating waiting so many months longer than he documents. 6 months, but hey add 9 months to that. Awful. Also, since covid, no face to face. I read the information attached to your post. It is my understanding the Neurology services are currently under review were i am from (n.i)
With reference to epilepsy nurses, there is a number provided to the epilepsy helpline on the page i get sent out following my consultants telephone appointment.
I’m so sorry to hear about your experience, tbh I think it’s the same everywhere. I spk to my neurologist twice a year on the phone in the evening when unfortunately I’m dosed out, fortunately for me my partner is with me and can lead the conversation.
I’m always told there is a nurse available if I need some support, I did call them two days ago as I’m having real difficulty with my current medication and need some advise, they have booked me an appointment, so I know my know my next appointment with the neurologist next year will be put forward by 6 months! At least I got an appointment though with the nurse. Some advice though, please do not discharge yourself , as much as we complain we are very lucky to have a neurologist, there are ppl out there desperate for an appointment regardless of face to face or via phone. Once you discharge yourself you don’t have a hope in hell in getting another as you self discharged. I always use epilepsy action for anything I’m concerned about, they always have up to date info and advice. Have you been on their website? They have a great buddy scheme too , just another outlet for you. Hope it works out for you 😊
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