Neurology Waiting Lists

[Bloneg]

Hi. I’m currently waiting for my urgent referral neurology appointment. According to the NICE guidelines, urgent referrals should be seen within 2 weeks, but I was referred back in January.

The neurology department can see my referral, but not the waiting list. The patient booking team helpline people can see me in the system, but can’t see the waiting list. I emailed a compliant a few weeks ago, because patients are supposed to be told how long they’ll need to wait. The response was that they book clinics in 6 week blocks, all the clinics up to May were fully booked, and that I’d probably get an appointment for the May clinics.

I’m at breaking point. I watch the letterbox everyday, in the hope that the appointment letter is coming. Would I have received a letter by now if I’d got a place in the May clinics?

At the start of January, my right leg and bladder stopped working properly, and I developed burning pain (allodynia?) all over both my legs and hips plus pins and needles in both my feet and lower legs.

The impact of the pain, lack of sleep, worry about not knowing what is wrong, not knowing when I’ll get an appointment, and the worry about the long term implications of having no treatment for so long is having a huge impact on my mental health, and I’m now signed off work.

My whole life is on hold. We were supposed to be booking our summer holiday in January. We were planning a holiday of memories for the kids (as we never go abroad), before they all start to fly the nest, but how can we plan mad train journeys and cycling around Europe when I’m like this.

Can’t afford to go private, and there no private places in our NHS region anyway.

I just don’t know what to do. My GP is at her wits end too. She tried referring me for a brain and spine mri, as she knew that it would be the first thing the neurologist would ask for, and it would mean less time on the waiting list for that, once I saw the neurologist, but it got turned down. She’s put me on gabapentin, which takes the edge off the pain, but that’s all.

Has anyone else had similar problems? Are my frustrations and building anger misplaced? Is there anything else we can do to get an appointment? Possibly a silly question, but I’m desperate!

Ta.

[Bevvy]

I suggest you contact PALS at the hospital. They can be expensive helpful to advocate for the patient. Ask gp again to refer you for MRI. They should accept referral from gp. I had a spine MRI booked because gp referred me.

At very least PALS should be able to find out when you will be seen.

[Bloneg in reply to Bevvy]

Thanks. Just looked up PALS and they look brilliant, but they are only active in England. Unfortunately I'm up in the north of Scotland. It looks like the closest we have is PASS, but it's run by CAB and will only help you understand your rights or support me if I want to put a compliant in. Wish we had PALS!

[weathervane in reply to Bloneg]

Go back to gp and ask him to refer you again for an mri , particularly because of bladder issues. The other alternative is to get private mri but can be expensive. I hope you get seen as soon as possible.

[cyberbarn in reply to Bloneg]

You have good cause to put in a complaint, so use PASS. It was commissioned by NHS Scot to do what PALS does in England.

[Hurtsalot]

You could writing to your MP or going to their surgery. Mine was quite helpful when I contacted them about similar delays. I also wrote to the CEO of the NHS trust , the Director of the hospital and the consultant. It did speed things up I think. Good luck

[Catr12]

I’m from Scotland too and had to wait 3 months for neurologist. I’ve got pins and needles all over my body. I was taking amtripl and he suggest Gabapentin too. Takes edge off the pain.

[Judo1010]

Hi, I’ve been waiting for over three years now for an operation on the disks in my neck. Which in my opinion have gotten worse during that time. I’m scheduled in 0n the 26th of April, but not for the operation. It’s for 90 mins of tests, that just to see if it will be ok for me to have the opp. So 3 months is good.

[Bloneg in reply to Judo1010]

That’s awful. Hope you get your op soon.

[Geripop]

Hi Bloneg, has your GP not said they’re concerned about your lack of bladder control added to your leg pain?

I’d had enough and called 111 that I was in agony & the lack of urine control was getting worse so they said just to get myself to an A&E to get it looked at ASAP. So drove myself to Aberdeen Royal Infirmary, got an inconclusive x-ray but I knew something was seriously wrong and said I wanted a 2nd opinion. I was held overnight for MRI and in surgery for Cauda Equina Syndrome by 8am all because I couldn’t control my pee & my saddle area was numb. I’d had that for months & GP took no notice but Cauda Equina is an urgent surgery and longer it’s left the harder it is for a successful surgery. My back pain much better now but not fully gone & now have incontinence due to GP inaction, but better than it was.

When you’re getting nowhere, sometimes you have to get pushy. You know your body better than anyone.

[Bloneg in reply to Geripop]

That’s awful. I’m so sorry you’ve been through that.

[Geripop in reply to Bloneg]

Thank you, while my GP & local radiologist were rubbish I can’t say enough good things about my Orthopaedic Consultant at ARI. He’s been amazing & done all my spinal surgeries as well as assisting at my neurosurgeries. He was the one that found I have degenerating discs & further spinal stenosis so I got surgery before they got worse. He got me all the info to complain about my treatment by GP - tho I decided not to, the damage already done & taking compensation from NHS a bit churlish when I still need them.

I’m sorry you’re not being heard to get a scan done...it’s hard when you know you’ll need them & for your GP to be dismissed in getting them done too is outrageous! Everything needs to be requested by a GP so why the radiology dept are ignoring her request is terrible. What you’re feeling in you legs & feet is symptomatic of nerve blockage by something so your get strange sensations. I hope you get seen soon, the longer it’s left the harder it is to get a successful outcome.

[Viklou]

I ended up paying £200 to see a Neurologist privately for a consultation from there he referred me under his care in the NHS which still took 4 months, on the first appointment I had all the nerve conduction tests and walked out with a diagnosis. I wasn't getting much help from the GP as they had referred me for hip pain and to orthopaedics rather than a Neurologist. So because they had done a referral to what was the wrong team they wouldn't refer me to where i needed to go, when I said it's a nerve issue. However at least at the orthopaedic appointment I got an urgent MRI the day after I saw them, which I found out yesterday I've been referred via them to a spinal surgeon as although they didn't see much wrong with the joints or bones in my hip he mentioned my spine and something about decompression. He said unfortunately it's a 9 month wait to see a spinal surgeon but if I'm in pain then ask the GP to try and push the appointment. Thankfully it turns out I was referred back in December so could see one in August or September this year lol. With the wait I just didn't ask anymore questions as if I need help in the meantime I'll just visit the consultant Neurologist privately if I need to but I see him again in August anyway.

I'm on Gabapentin and buprenorphine patches to help with the pain

[VS1955]

Do you know which consultant you're being referred to? If you do, try calling their secretary, they might give you an idea.

[Bloneg in reply to VS1955]

I’ve done that. Unfortunately they can no longer see the waiting lists, only the referral letters and medical notes.

[Asti-Spumanti]

I have had my mri and the diagnosis is cervical myelopathy. Consultant from pain clinic did the mri request. That all came through quite quickly. About 4 weeks later the consultant called and told me the diagnosis and that he had done an urgent referral to spinal, he pointed out the red flag symptoms of cauda equina and if I had any to go straight to A&E. He also put a link to me via text.That was january, a couple of weeks ago I started chasing up the referral. The first lady/girl I spoke to told me she could not find a referral but that one has been returned to my gp with advice. (Not so) I tried a week later and a lady was very helpful she had referral I.D reference, the name if the doctor who had approved the referral. I then phoned QMC and a very helpful man did some digging and said that spinal had referred me on to neurology. A week after I got a letter through (today) my urgent appointment to see Consultant is 24th November!!!!

I too am on Gabapentin, Amitriptyline, Longtec, Dihydrocodeine and paracetamol but still cannot get good pain relief.

On Monday I am going to phone GP surgery to request a copy of the MRI result.

With all the strikes appointments have been pushed back and obviously cancer patients will be priority. Up until a year ago I was working at GP Surgery but I was retired on the grounds of ill health - I have suffered with spinal stenosis since 2011 when I had my first op, now been up graded to cervical myelopathy.

I hope that you get a sooner appointment than i have. But really you do need an mri scan to see how severe your problem is. Good luck

[Bloneg]

wow. I’m blown away by the struggles we have to get the treatment we need.

I’ve had a bit of an update. My NHS region had 2 neurologists, but one left at short notice, so the waiting lists have gone ‘boom’. My GP has said that she’s heard that they’ve managed to get a locum in, as a short-term solution. I didn’t even know you could get locum consultants.

I’ve looked at going private again, but the nearest is 150 miles away, so not really a goer.

The only thing I can do is wait. I’ll leave the complaining until after I’ve had my appointment - don’t want to annoy the patient booking team, and get myself pushed down the list a bit further.

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spine-health.com/conditions...

[Viklou]

Have you been to a&e because what you described could be serious. Has anyone mentioned cauda equina to you. Hope you get an appointment very soon