neuro waiting times, and NHS vs Private?

Hey guys. Something that came up in my other thread but which seems to warrant a thread of its own…

I’ve been waiting 14 weeks to see a neurologist, and the hospital tell me I still have “considerably longer” to wait. I was considering going private just to get the initial consultation, and switching back to Nhs once I’d got the ball rolling.

Has anyone taken this approach? Someone pointed out the difficulty of getting your notes back between private and Nhs doctors, which is something I’ve already experienced because my GP gave me an “ECN” referral, meaning basically using a private doctor but through the Nhs. I’m fairly sure my GP still doesn’t have the notes! (that wasn’t a neuro though, just a hand nerve specialist as my GP sent me off to be tested for Carpal Tunnel, ignoring all my other symptoms!)

So my question is whether it’s worth going private, whether it might cause more delays? I think when I see the GP I will ask if I could be seen sooner if I travelled. Right now I’d travel the length of the country for some answers!

I did this as I wanted to get the ball rolling. Luckily for me it was the same neuro I saw privately and on the NHS. I wanted to do it as I knew after the first app he would want me to have an MRI and I would be put on another waiting list. I think if you can afford it its a good idea. Not sure about the notes though, sorry.

Hi Dave,

I seem to recall reading somewhere (?) that the time span from when your GP has made the initial referral to when you actually see the consultant should be somewhere between 16-18 weeks on the nhs. That if you were to opt to go private for the initial consultation, tests and diagnosis and were then to switch back to the nhs for treatment, then your position in terms of wating times would be the same as any other nhs patient.

It may pay you to ask the same question on the Everday Living forum as I’m fairly sure there are several people on there who have chosen to go via the private route first, so they may be able to give you some more info.

From what I’ve read on these forums alone it seems that waiting times can vary depending on which part of the country you live. It’s also common knowledge that we are very short on neurologists in this country and it’s one of the busiest departments too.

Going on the fact that you’ve already waited 14 weeks I think I’d definitely be inclined to hang in there for now. Contact the hospital again if you’ve not received an appt. Or better still, ask your GP to chase it up - they have a bit more ‘weight’ behind them than us patients.

Good luck Dave, I hope the ball starts rolling for you very soon, limboland is the pits as it is without the added stress of hospital waiting times.

Let us know how you get on

Debbie xx

Hi Dave,

For the initial appointment it is certainly better. Make sure that you tell them all further tests; hospitalisation etc. is on the NHS.

This is allowed now since the Law Lords made a ruling about 4 years ago.

Funny thing is that although you probably will see the same consultant as the one in NHS the bedside manner; thoroughness and length of appointment seems to be better.

Don’t think I’m against the NHS; it is without question the best institution ever.

The NICE Guidelines call for rapid diagnosis (haven’t checked if it is in this new version) but I would not class rapid as 14 weeks or longer; http://guidance.nice.org.uk/CG8 . Who you complain to if it is not RAPID I don’t know.

Get the ball rolling; costs about £180; good luck.

George

Hi Dave x

I considered the same thing when I was told a 12 week wait but decided to hang in there as it was down as an ‘urgent’ referral (ha ha!!) so thought it would be quicker - how wrong was I lol

After patiently waiting the 14 weeks I was told I would have to wait a lot longer by the hospital appointments peeps - even though my GP had contacted them by letter & phone several times - they denied they had heard from her and said they had not received any letters from my GP!!

So I started nagging the neuro’s secretary by phone & e mail - eventually I told her I was boking privately with the same neuro - then she found my letters etc, showed them to the neuro and he said he’d see me straight away! So I cancelled the private appointment!

In hindsight I wish I had gone private at the very beginning - I would have been so much further along now!!!

xxjenxx

I saw the neuro privately for first consultation…the next day,he ordered a new mri but switched to nhs for that.

My problem arose when he sent me a letter to see if I wanted to see him privately for the results.

At £250-00 I said no I will stay nhs, it was 4 months and after constant chasing before I saw him,and he was a totally different person when I wasnt paying him. Luckily he transferred me to an ms specialist.

Pip

I would think about seeing someone privately but it’s not without difficulty. once seen you will have to join the que again, if you have waited this long what’s another couple of weeks? the prob is that once seen privately you then have to go back of que again. as pip said above! I was in same position as you waited but as I had been in NHS que I got my MRI two weeks later? if I had gone private I would have then joined the que, I got results in four days.

I was looking at seeing someone privately. However I have a good GP and he referred mr to a consultant physio, who them referred me to a rheumatologist same day. He then se I had to go hospital. 12 days later I had all test/scans And a d for MS. If my GP had not have been so persistent I would still be waiting and out of pocket. Mike

I did exactly what you are thinking of. I had a private consultation, to try and establish whether my problems might be neurological or if I needed to go back to the GP and look for other possible causes. In the end, it turned out that neurology was the right way to go for answers for me but, at the time, I had no idea what was wrong with me and I was happy to pay the £250 to speed up the initial investigation. Switching to NHS straight after that seemed to go smoothly for me.

Dave,

I have had no problems at all “getting the notes”, because guess what?

My private & NHS neuros are one and the same person!

Check, because this may very well be the case where you are too. After all, there aren’t that many neuros around - MS specialists even fewer.

So if you see one privately, it’s more than likely the same one you would (eventually) have seem on the NHS anyway.

Tina

I was lucky in the fact that my husbands work had private health insurance that covered me as well.

My gp refered me to a private neuro. I had mri first then came evoked potential tests and lastly lumber puncture.

I had a diagnosis within 3 months. I was then put in the care of my local nhs hospital.

It was a shock but i have never been in limbo.

Teresa. x

After seven of my NHS neurology referrals were cancelled due to circumstances beyond the neurology departments control I opted to go private after discussing my situation with my GP.

I paid £200 for the private appointment the consultants manners were great, he spent about 50 minutes with me only to note down www.neurosymptoms.org on an envelope and said here this is what is wrong with you. I did not have a supporting referral by my GP who made the suggestion to the consultant that my symptoms were of psychological nature. The consultant did not have any notes at all or what tests had been done and what conditions had been ruled out.

Pros about the private appointment got my appointment within six weeks, consultant was very polite with good manners.
Cons about the private appointment no notes or records on what tests had been done and what conditions were ruled and a disappointing referral letter from the GP.

My second referral was on the NHS quick first appointment which was a surprise diagnosed with spasticity put on some meds and discharged. I was advised by the neuro to ask my gp to refer to her again if symptoms persisted. Had to be referred back unfortunately the neurologist claims she never recieved the letter.

Pros about the NHS referral good manners spent about fourty minutes with me did some tests and diagnosed spasticity and put on meds.
Cons despite having my file present on the desk the neuro did not bother going through the notes to see what conditions had been diagnosed and ruled out. GPs request for another appointment apparently did not reach her.

My third referral on the NHS got my appointment fairly quickly, the most kind and caring neurologist I have ever met. Due to the travelling involved I decided to be referred back to the local neuro. The third neurologist said he would make sure she gets my letter and I recieve an appointment with her.

This neurologist was the best and if anyone is interested I saw him at Salford Royal, there were no cons about this appointment.

My fourth referral back to second neurologist long wait as she is on vacation I finally get my appointment but my GP had written to the neurology department for advice from the neurologist I had seen privately. (Slightly of topic now I will come back to this in a moment He writes back to my GP to have me admitted as my symptom at that time were indicative of multiple sclerosis and because he was not primarily involved in my care he refused to make a firm diagnosis and recommend any treatment and did ask my GP to let him take over my care and have me admitted to neurology. This was never mentioned to me)

I see the neurologist again who ordered some tests and once results were back I was discharged because apparently I had failed to attend the appointments booked as an inpatient which resulted me in chasing up on stuff and she wrote to me apologising and that a follow up appointment would be issued which never did arrive.

Pros none
Cons 100%

Fifth referral on the NHS very fast appointment again no supportive letter from my GP no relevant information provided. Consultant had good manners was seen on time appointment only lasted 10 minutes.

Pros Good manners looked promising.
Cons Not enough time spent discussing symptoms. Was fooled into having a lumbar puncture with a promise of a follow up appointment even if the LP was normal. No follow up very poor service.

Sixth referral was a private one and before that was arranged I decided to get my test results ready and put them in my pocket. I asked to be referred back again to the same neuro who pointed me towards neurosymptoms.org. I had some hope because I had come across his letter in my medical records.

Pros got my appointment fast.
Cons as the neurologist came out and called me he mutters “you again, there is nothing wrong with you why have you come back to see me?” No tests done just questioned me like I was a criminal and why I didn’t agree with his diagnosis.

Ten minutes into the appointment I’d had enough and told him you know what I’m going home but before I go here are some test results and letters I’d like you to read them before I walkout of here. He read them face went red and he said something is going on. I said to him I don’t care no more I’m going home. He asked me to sit and talk and I told him if it wasn’t for his attitude maybe I’d sit and discuss things but I’ve got better things to do I walked out on him and told him don’t expect any payment from me.

The consultant had no manners and decided to interrogate me. Absoultely pathetic appointment.

I would say if you are going to go private make sure you have a supportive letter and if possible take some copies of results down and what conditions you have had ruled out. My best experience was on the NHS with a neuro based at salford royal but due to the travelling back and forth I decided to switch back to the local one.

If you can get someone to accompany you to the appointment that will be a plus and make sure they don’t wait outside and they are present with you for your consultation. I did take someone with me when I was conned into having a lumbar puncture but the person decided to wait outside and I was okay with it.

Hope the above is helpful information which you can take into consideration before deciding whether you want a private referral or one on the nhs.

Good luck which ever option you take.

I have beneden insurance. I got my nhs appointment the day I saw the gp and it was for 3 months. I used beneden and saw a consultant that week and had my MRI a week later. I had a follow up appointment and he wanted me to have a LP based on my results. Beneden doesn’t cover that much, but when I saw the nhs consultant I got a full MRI, LP and VER very quickly as I had the MRI. It did shorten the time, but he didn’t have access to my original scan and I’ve had to follow that up. It cost £250 for the initial appointment £450 for a cranial scan and £200 for the follow up. A LP would have cost £1600.

I found the nhs one spent a lot longer with me.

I consider myself very fortunate as I took myself to A&E on a tues had a MRI on thurs, lumbar puncture and a working diagnosis of MS on the friday. I was also placed on the waiting list for DMD’s on this day and have already began avonex treatment. This was all done on the NHS and I have been very lucky as I have seen my neurologist twice since this, my MS nurse checks on me weekly and I have been referred to a specialist MS neurologist. I feel very saddened when I read other peoples comments about having to wait for every test and the complacency of the medics involved.

missyone xx

I should imagine if you needed a and e then the speed was based on your level of need. I went to the GP when my eye hurt and saw a consultant that day and have had appointments every 3 weeks. When I went for something similar I had to wait as it wasn’t clinically obvious and the level of need wasn’t there.

Go abroad get mri it’s cheaper and no waiting I went Barcelona