Review appointment delays. Why are we accepting it?

[RR25]

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

[Why24]

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

[RR25 in reply to Why24]

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.

Good luck

[Why24 in reply to RR25]

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.

[RR25 in reply to Why24]

7 months to attempt to try a new medication is far too long? 😬

Do you have an epilepsy nurse?

I have been given the epilepsy nurse 'helpline' number previously.

There is no point seeing Gp's about an issue you are under a consultant for, you are right about that.

Mine are very very minor focal seizures, hopefully some day they will disappear and maybe in that time services will improve. We can only hope.

[isthatamanda]

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.

We should be given more support.

[RR25 in reply to isthatamanda]

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.

Take care.

[EpilepsyAction1 Partner Epilepsy Action]

Hi

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 [e-mail] (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 [e-mail], 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

Regards

Diane

Helpline Team

[RR25 in reply to EpilepsyAction1]

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.

Thank you.

[car67]

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 😊

[Angie140720]

I have never seen or spoken to a consultant but was given a nurse specialist. She has been a gem and it was talking to her that helped me to get the right medication after years of having tonic clonic and absence seizures.

[dandelioncupcake]

My 7-year old child’s review has been pushed back unexpectedly by 2 months. To be honest her last appointment was so poor, I have such low expectations now that we have also gone private so at least have that as a back-up pathway. It shouldn’t be like this but I don’t know what else you’re supposed to do

[RR25 in reply to dandelioncupcake]

Children's reviews should not be changed. They are so young and the sooner they can be stable/seizure free the better.I tried to go private one time because I had got sent out my PET scan results and didn't know what they meant so I wanted to see the consultant. My gp was no use with this. His waiting list privately was 4 months from the date of booking so I held out till my NHS app.

Is the private consultant the same as NHS doctor?

It seems we are all in the 'same boat' when it comes to services and access. Hopefully it will improve some way after review of services. 🙏🤞

[Why24 in reply to RR25]

Oh, that review due back in March '24, date changed several occasions already, it's now on it's 3rd or 4th date change for 2025, it's been put back......

I'm so unhappy, I take Neurology so seriously, not sure if there are no staff, or whether a time wasting crew of ........, are responsible

[Why24 in reply to Why24]

Oh, had another communication. My appointment for next year, has been put back by another week

[RR25 in reply to Why24]

Will, you definitely need to get hold of the patients liason service or complaints team or even your epilepsy nurse.... Did they explain why your appointments keep getting changed?

I think my neurologist picked up on my frustrations. He wrote to me 10 days after my appointment with a letter of what was discussed, plan etc. Basically the same letter the GP gets... rather than 3 months after like previous years. I received it on Saturday. Either that, or he got a new secretary or a new system.

Take care.

[Why24 in reply to RR25]

Oh yeh, it appears the appointment has been put back for another several weeks now. Losing track of it, think this was an appointment due back in March/April '24.

[Why24 in reply to Why24]

Hmm....even by NHS standards, this is becoming surreal. Had an email 1 Hr & 8 minutes ago, to state that........my appointment time, has been changed again......

COULD YOU MAKE THIS STUFF UP ? On a positive note, suppose my appointment with that epilepsy Dr thing, is 13-14 -15 months behind schedule now, so have plenty of time to prepare for it. Am aware of what my approach will be, if it ever clashes with anything I've prearranged

[RR25 in reply to Why24]

If I were you at this stage I would ring and complain and ask why your appointment keeps getting put back. It is totally unacceptable at this stage. Contact pals, consultants secretary or epilepsy nurse. If you do not raise concerns with it they will deem it no issue for future. Which I feel, seems the case. Have you contacted them all at all to enquire why your appointment keeps getting changed?

[Why24 in reply to RR25]

Thanks, action was initiated 3 months back, with the highest authority in the UK. Can't really go higher than that, though will take 2-3yr's

On a positive ? 2 Hr's with another NHS Trust, who weren't aware of any issues I've arranged, resulted in a greater level of engagement and feedback, than in 6yr's with my own. Appalling level of failure, is a distinctive feature of the NHS Trust I'm dealing with (Nb. Merely a nuisance that so much time, is having to directed at dealing with t.).