AIBU - Todays doctor's appointment disappointing and frustrating

[AnxiousandExcited]

I have been having some sort of seizures and weakness, and a MRI showed grey matter heterotopia, which in most cases causes epilepsy. I had the MRI privately - my GP says that the current wait list for a neurology appointment is around 1.5 years and there are approx 7000(!) people waiting for an initial neurology appointment at my local hospital. He says that if I can, I should have a private 24hr EEG to check for epilepsy. I can't afford it - it will be £1370! I have recently started getting PIP, but at £60/week it will take a while to save up!
Meanwhile, all tests that my GP can do himself (ECG, bloods, Loop Monitor) are coming back as 'basically' normal - what that means I don't know, I suspect they are a tiny bit off but not enough to jar the nhs into urgent action.
I don't mean to bash the NHS - the doctors and all the staff are working so hard right now under impossible circumstances.
The doctors and nurses keep telling me that 'it's nothing to worry about' - and I'm not worried - I'm just feeling rotten, can't look after my children and am basically bedridden at the moment! AIBU to be so disappointed and frustrated?

Have you been to hospital when you’ve had these seizures?

Yes. Most times I don't bother if it is up to me because I know what will happen, but the times I went - taken by ambulance because I was not conscious, straight into resus, but by the time I got there I was 'back' at least partially - they take my obs, tell me I've had a seizure, keep half an eye on me (hospital corridor usually) whilst I recover, and then send me home saying it was just a seizure, contact your GP.

They aren't clonic tonic, they are partial/absence seizures for the most part, but sometimes I seem to have really bad ones. Officially if they last longer than 5 minutes I should go into hospital, but I have been told numerous times by VERY overworked hospital doctors that it is a seizure, they can't admit me or do any tests because that isn't standard procedure, and I don't need to come to the hospital...
I'm not in the epilepsy clinic or under any teams because there are no appointments...

You should be being referred to a First Fit Clinic, not general Neurology.

There are targets to see people with a first seizure within 2 weeks, not the years wait for the general mix of neurology.

I know absolutely nothing about this but would want to know whether this 24h EEG is the only way to diagnose epilepsy, what are the treatment options depending on the outcomes of that, and is it possible for them to prescribe anything to see if it would help, without going through the 24h EEG. If the answers were yes, it's needed, and they wouldn't do any more without the 24h EEG, I personally would take out a loan or ask to borrow money from family

So sorry to see this

It worries me that, with long waiting lists, more and more people may go private and we end up with 2 tier system, bad for equality, rather than everyone getting a good NHS service

I’d be wary of a private EEG unless you can afford the private Neurology consultation to go with it; or even that first and be advised what investigations you need. You don’t want to end up with a report that the GP finds difficult to interpret. Even if it’s a normal report, then what? You’ve had essentially normal/nothing to worry tests already. The first fit clinic sounds like a good idea.

@LadyWithLapdog Thanks - you are right about that, so add on around £350 for the consultation afterwards as well!

@AnnaMagnani I have never even heard about a FirstFit Clinic - I must look it up and try to convince my GP to refer me? He seems to think that there isn't much point in doing any referrals right now. It's so frustrating, it's almost become his policy! Which is of-course ridiculous! or AIBU?

@notanothertakeaway yes, and did you know that nowadays you can wait months for a PRIVATE appointment?
It seems the NHS might have died from Covid after all.

@AnxiousandExcited Our DD had a grand mal seizure on Sunday, was admitted for tests (ECG, CT, bloods) and is now on a 2-week wait for a First Seizure Clinic with the neurology team. On that basis it doesn't sound like you've been put on the right pathway.

GPs can't help in this case. It's just not what they're trained to do. Call the neurology department of your hospital, ask for their First Seizure advice and procedure, and then see if you can go from there.

Sure, A&E is mobbed. And yes we were in paediatric A&E when we were admitted on Sunday. But from what they said the pathway is the same regardless of age, as seizures are serious and need investigation. Good luck.

I was diagnosed with epilepsy after having a partial seizure during an EEG. It was pure chance that I had the seizure at that moment. If you don't have a seizure during the EEG then they wouldn't necessarily see anything out of the ordinary. Your GP should know this and should not encourage you to spend money you don't have.

I will say that nearly 20 years ago I went private because of the 24 week wait times. I saw the Consultant I was waiting to see on the NHS. He then had me moved up his NHS list for the EEG because he knew it would epilepsy and wouldn't need any further investigation.

Regardless of your GP's opinion about wait times you need a specialist referral. I'm really sorry you're going through this. Epilepsy Action have a helpline, you could call them to ask for advice.

I don't want to alarm you but it is wrong for any HCP to say you should not expect medical treatment after a partial seizure when you are not being managed or monitored. It can be very dangerous. You could have hit your head without knowing.

Are you writing a seizure diary? I was asked to do this and include things like what I ate / sleep etc.

Sorry this reply was very long. I'm so sorry for what you're going through. Seizures are very scary.

@eyeslikebutterflies OK, thanks for this. Will try it tommorrow and update you all then!

If anything I would pay to see a neurologist privately, pitifully that might be the only way to see one before the 18 month wait.
I've been there and got the tshirt with a&e, not at all their fault but unless you are having multiple seizures in a few hours, or very long lasting ones, or have injured yourself during a seizure. It is a ah well off you pop job.

The problem with the eeg is that if you don't actively have seizure activity whilst being monitored then you are left none the wiser, plus out of pocket and still 18m to wait.

I dont know what its like where you are but sometimes here seeing a dr privately can sometimes bump you up their NHS list. Shit that's the way it works. But even if not a neurologist should be able to start you on some sort of drug to try and control the seizures.

And I'm sure you aren't....but you have stopped driving, yes?

They aren't clonic tonic, they are partial/absence seizures for the most part, but sometimes I seem to have really bad ones.

It doesn't sounds like a normal absence seizure, it sounds like an Atypical absence which can last longer and cause injury (normal absence seizure usually don't and don't usually last more than 30 seconds)

If this is the case then I'd definitely push for a referral. It took me about 4 months to get an MRI and then about a month or so for the EEG. 6 -7 months total for a full diagnosis but this was a few years ago and obviously pre-pandemic however any kind of seizure should be taken seriously and you cannot wait years to be referred.

Keep a seizure diary. There are apps available if that's more accessible for you. If you can, get someone to record the seizures as that may also help with a diagnosis. A seizure diary is vital, particularly if your seizures get worse and you still haven't been referred.

epilepsysociety.org.uk/about-epilepsy/epileptic-seizures/absence-seizures

There's also Epilepsy Action, which IIRC has a forum for support and they can keep you up to date with current info about waiting lists, helplines and support etc. You will need someone to accompany you to all appointments if you can who has a good understanding of what's happening as with absence, atypical or otherwise you may miss vital bits of information or have gaps in your memory.

@70sduvet Thanks for the reply. I don't drive, but I was wondering if might be able to get a bus pass because I can't. I was planning to learn but not anymore....
@Aveisenim yes, they are atypical - I believe that is normal for heterotopias. I've at times been told of it being psychological because of that... but I really don't think it is, due to past experiences/treatments. I'm going to try and get into the 'system'. We'll see tomorrow.

@AnxiousandExcited in my area you can get a half price pass with epilepsy and some other medical issues. You may be able to apply with just a gp letter as evidence but I'm not sure. It's while since I applied as I finally got my licence back after 13 years of seizures!
nb* mostly because I wouldn't change seizure meds as I was trying to conceive and BF which lowered the number of medication available to use. Once I could pick from them all I was on the correct med and dose within months and really have my life back on track.
So just make the neuro aware if you are planning more children or BF as it dramatically lowers the amount of "safe" drugs. Also they didn't work for me but I know of others who have done very well on them

Your GP is not correct. First fit clinic is 2 week rule. Although I’m not sure why the hospital hasn’t referred for this either.

Plus he can send another letter after the initial referral, to try and expedite your appointment.

cks.nice.org.uk/topics/epilepsy/management/suspected-epilepsy/

I had some health problems and saw a neurologist, he arranged a load of blood tests and two scans. I have the next available appointment with him to discus the results, this is on 27 July 2022. I feel so sorry for the staff and doctors who are trying to work through their case loads but simply can't.

warwickacutemedicine.co.uk/downloads/firstfit.pdf

It’s pretty similar pathway in most hospitals

An update: We are trying to get into the first fit clinic here, but nobody seems to know how to do that. We have been in touch with PALS and hopefully they will help eventually!

Im sort of in the same situation, stuck in limbo waiting and waiting. I actually went to A&E once, who basically refused to do anything (I was crying in pain) because 'I'm in the system to be seen'...already had a referral

@Lemonlady22 I hope this thread helps you a bit too. It's very frustrating.

Hi @AnxiousandExcited, I just wanted to drop in and see how you're doing. Is your GP prepared to issue you a referral letter? Would one of the national epilepsy centres be an option for referral? I believe there's a couple nationwide. If you receive a diagnosis you can apply for cheaper rail, bus, free prescriptions and I believe there's some other financial support you're entitled to apply for.
I wish you all the best for your recovery and gaining a full diagnosis

Could you consider Beneden? It's a non for profit healthcare cooperative. You will need to be a member for 3/6 months to get some of the benefits, it's about £12 a month. But it's quicker than 1.5 years waiting for NHS & cheaper than private

www.benenden.co.uk

@Toomanylosthours Thanks! I did finally get some neurology appointments - 2! One from neurology triage - first fit clinic, and another from what PALS helped with. PALS have been so helpful. So we will see what happens.
@DirtyDancing - but will they pay for existing conditions?

It looks like they do - see here: www.benenden.co.uk/health/healthcare/#!how-it-works

but there is a waiting time