Neurology Waiting Times

Hi all.

I got referred to see a neurologist by my GP back at the start of May, they suspect I may have MS or a similar condition. So far I still haven’t received anything regarding an appointment. I’ve chased it up with both my GP and the hospital who confirm I’m definitely on the waiting list, it’s jus a very long list at the moment. I’m located in Birmingham so it is quite a big city with lots of demand in health services.

I’m wondering what other peoples experiences are. How long did your referral take? I know the NHS aims for 18 weeks from referral to treatment but as I’m at 16 weeks now, with no appointment, looks like I’ll overshoot that. It’s causing a lot of anxiety for me and in the time I’ve been waiting I’ve had another of what I think is a relapse which left me in a lot of pain and struggling to walk for a couple days at its worst.

So yeah, just want to hear other peoples experiences with waiting for their first neuro appointment.

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Hi Joe1,

I was referred to see a Neurologist 6 months ago by my Opthal-Neurologist. I’m in London but I was told that out of all the specialists Neurology has the longest waiting lists and put that together with the Covid backlog it will be around 18 months wait maybe longer!

I am currently waiting for a spinal MRI so I have decided that as soon as I have had that done I will see a Neurologist privately just for an initial consultation as that’s all I could afford but would save months of waiting.

I hope your wait is not as long as predicted for me. Good luck!

Jacs

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When I was first referred to a neurologist (20 years ago) the waiting lists were really long so I paid for the consultation privately. The neurologist then put me on his NHS list for MRI etc and I then saw the same chap on the NHS after I was diagnosed. Frustrating but I needed to know what was up with me so I showed them the colour of my money :roll_eyes:

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Hi, I went private and was seen within a week. The reason I did that was because the NHS waiting list was 10 months long. This was well before COVID hit too. If you can stretch to it that would be my recommendation.
Good luck.
Retro.

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Oh dear. Is there anyone who’s managed to actually get their appointment solely via the NHS?! I really don’t want to go private, not just because of the cost but because it really shouldn’t be the way things work. Paying a fee to skip the queue doesn’t sit right with me.

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It is a sad fact of high demand and limited resources, and I can understand your principles too.

My personal concerns breached my principles twice regarding neurology appointments. Of the two private appointments, one was a total waste of time and money, I saw the same neuro I was seeing on NHS, he was just as dismissive and condescending as ever, so for £250 I got a coffee and carpeted consulting room.
The next time was the polar opposite, I met a neuro who listened, did not waste time, and put me forward for scans and drug trials, he then put me on his NHS list where he continued to provide a great service. I wont try to steer you either way but some times it might be better to move as quickly a you can.
Good luck
Mick

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I understand exactly where you are at.

It is now 2 1/2 years since I developed my latest neurological symptoms. The waits have been unbearable. It took 15 months for them to actually get round to do an MRI scan. I eventually asked to be referred elsewhere as at Newcastle they just kept kicking things down the road, in 4 -6 month intervals. I did get seen in May in York, and was told he’d review everything and see me again in person. That follow-up appointment is in January next year. No feed back from the first appointment, nothing. I had to chase getting this appointment too. When I phoned, and when it was answered rather than just the answer phone, the secretary said, “oh, yes, I see you are meant to have a follow-up appointment”, so it was quite clear that I hadn’t even been put on the list at all. Then said the earliest would be in January. Less than 50% are being seen at my NHS trust within the 18 weeks, according to the recent published figures, and the waiting times continue to lengthen.

I’m actually going to discuss this with some GP from my practice in the next few days. But I’ve issues there, I can’t even get to talk to my usual GP. I think this one is a locum. I’ve dealt with 5 different GPs over the last 5 months - so no continuity of care.

The reason there is such pressure on neurologists and such long waiting times is that the NHS ratio of neurologists to population is a shocking 1/8th that of the other west European countries, and that was before the Brexit exodus, and Covid.

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After reading everyone’s responses I am clearly very lucky with the treatment I have received so far. I attended Moorfields eye hospital in April the diagnosis was that I had optic neuritis - I was immediately sent for an MRI brain scan and lesions were found. I was then referred to the national neurology hospital and have already had a spinal mri and a lumber puncture - my second appointment with the Professor of Neurology is next week. Big thank you to the NHS I feel I have been well looked after.

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Hello HPbabe

Welcome to the forum. It does sound as though you’ve been ‘lucky’ with getting your diagnosis. If indeed it’s possible or appropriate to use that word. Clearly unlucky to get MS at all!! (I assume you’ve been diagnosed!)

Your next hurdle will probably be discussing and choosing the right disease modifying drug for you. These are designed to reduce the number and severity of relapses and there are many of them. Your neurologist will probably offer you a selection of drugs depending on how ‘active’ your MS is. Have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid Seeing the variety of drugs available will at least allow you to familiarise yourself with them in advance.

Best of luck.

Sue

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Hi

@Joe1 I am also from Birmingham. currently 32 years old

I went into A&E in April 2021 with my leg as i felt something was not right. The hospital first suggested that it was a Stroke and admitted me onto the stroke ward. I then had 2x MRI and 2x CT scans and they found inflamation on the brain. This is when they said it is not a stroke but I need to be referred to see a neurologist

I was then given a quick appointment to see a MS nurse who explained to me what will happen now. (At this stage it is still not clear if it is MS). I was then quickly referred back to hospital to have a spine MRI as it was not done.

I then had a follow up call with a nero consultant from Birmingham city hospital back in June/July who said there are lesions on the brain and spine but since nothing light up with the dye they put in me during both scans they said they will not be doing anything in terms of drugs etc. They said i should wait to see the Neuro in Queen elizabeth who make the final decision.

The Appt to see Neuro was meant to be in September but since they have seen my results it has now been moved to Dec 2021. I was also told at stage 1 of my treatment that it could be a long wait.

From my example of going into hospital in April my first actual appt with Neuro team at QE is in dec.

have you had any scans done ? most likely if not they would want to do a MRI on the brain and spine with contrast.

Please feel free to contact me for any questions

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Hi Andy,

Yeah it’s the QE I’m waiting for too. I’ve not had any scans or seen any neurologist or nureses. I’m seen 2 GP’s, had a basic neuro exam from one of them and blood tests to rule deficiencies/other conditions out. I’ve not had any indication to how long I’ll be waiting for heard anything about an initial appointment.

Not hopeful I’ll be seen any time soon.

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When I went to my GP in June with my first suspected MS symptoms he advised I use my Bupa for a neurology consult as it would be quicker. When I was told it was a 6 week wait he got me a next day NHS appointment at the Edinburgh Royal infirmary. In the 5 months since I have had an MRI, lumbar puncture and 2 follow up consultations with him.

Looking at the forums here it seems to be a total postcode lottery.

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I did. I come under Cardiff so it’s Wales not England. It took almost exactly two years from first seeing my GP to a definite diagnosis; it took maybe 8 months to get the initial neurology appt, and that was with my GP constantly bothering them to try to get me moved up the waiting list, bless him. After that it was onto the waiting list for an MRI; I had that done and was passed over to an MS specialist neuro who told me to expect a diagnosis of progressive MS. I had a failed attempt at a lumbar puncture, and was then onto the waiting list for an x-ray guided lumbar. After that I waited about a month for the results of that, and that brings us to like a week ago. So it’s more or less been a journey of waiting lists. Far and away the most frustrating wait was for the initial neuro appt, so I feel for you, truly I do. My understanding is that actually two years isn’t too bad a wait for an MS diagnosis in the U.K. (because it’s progressive and was progressing quite fast, I think that made the diagnosis easier). I entirely agree that you shouldn’t have to go private, and for myself it simply wasn’t an option, as I’m not currently working so I couldn’t get the money together if my life depended on it. But honestly, if you can afford it, I would probably go private. It’s horrific that it would be necessary, but what matters more than your health? Sadly our system is broken :confused:

Been waiting almost a year now. Been in constant pain, weakness, tingling, fatigue and numbness. Bladder has even started causing some trouble a couple times. I’m moving to a new city next month and scared of starting the wait all over again. My GP asked neurology to treat my case as urgent back in November but I’ve still heard nothing. I’m tired of all this.

Hey Joe!, from my own experience, I had my first MRI of my brain in November 2021. It took nearly 10 years for any GP to really listen when I explained my pains and migraines. Got my result within two weeks as ‘urgent’. The GP told there was a high suspicion of demyelination. At that point I had no idea what that was but was referred for a spinal thoracic and cervical MRI at the end of December 2021 which showed a lesion as well. I was technically referred to neurology in november but I kept calling once a week after nearly 3 months of not hearing anything. They did offer me a last minute appointment but I had covid then so I finally had my appointment on March 3rd. Neurologist asked me a few questions, checked my reflexes (apparently I am weaker a bit on my right side and balance is off) and told me he will refer me for spinal tap and wanted to see me again after a few months. Ended up being called for the spinal tap the next day and got my second neuro appt. for May 5th.

Everyone keeps telling me this is fast all things considered…I just would like to know the results of the spinal tap…I swear mentally I am struggling.

I’m sorry you’ve been waiting so long. No doubt you will be getting your new GP on the case as soon as you move, and you might just get lucky and be seen faster in your new location. Failing that (and I know you don’t like this idea, but sometimes needs must) you could consider talking to your new GP about which hospital specialists in your new catchment area do private clinics as well as their NHS lists, and get your GP to refer you for a first appointment privately, just to get the ball rolling.

Hi Joe, it may be worth stating the new area you’re moving to see if anyone on here can offer insight, at least to try and alleviate any further anxieties.
I was referred as urgent 12mo and things went through smoothly to diagnosis in September, I’m in Yorkshire and it is unfortunately luck of the draw with NHS.

I really hope you get answers soon, take care x

It is actually Yorkshire I’m moving to and from what I can tell the waiting waiting times are much shorter than where I am now so I may be better off actually. Hard to tell.

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Well, I’ve moved and got my referral from my new GP. He warned me of the “extremely long waits” of up to “2-3 months before you even get an appointment”. I laughed. Hopefully he’s right.

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Well that’s certainly progress and I expect you’ll know soon when that date is. I was referred and got a letter after only a week confirming my initial appt for 4 months later!!

At least it’s a weight off when you actually know what’s going on x