Hi everyone,
I have been waiting for a month now and have another month and a half to go before my first neurology appointment, but the symptoms are getting worse and the GP’s have told me I am lucky to have the appointment date I have. I’ve started to question whether it is worth looking at the private route for the initial consultation and mri part, the local private hospitals consultant is the head of neurology for the local nhs hospital.
My worry is that once you go private you are stuck in the private system, but the wait till November is going to be a rough one.
Hi there, i can only go on my own experience but your timescales do seem pretty good. I had 8 months to wait for my first neuro appointment and between mris and SSEP tests it has been another 3 months with lumbar puncture in a fortnight. I think you can slot back into NHS at any point if you go private for a consultation and some private consultants work within the nhs too as you have mentioned. It isnt a quick process but no doubt going private for consult and mri if they suggest its needed would be quicker privately. I was a little confused as you said a month and a half wait and then November. Not much help am afraid just wanted to say hi!
Pix
Well, that’s what I did, 20+ years ago. I had private health insurance through work, and the GP referred me to a neurologist who was also the main one at the local hospital, so I had a a few consultations and an MRI privately. By then knew what the problem was, and I was then referred to his NHS clinic and had my LP and formal diagnosis there.
If you go private, I would recommend seeing the consultant neurologist whom you would be seeing through the NHS. And make clear that you’re paying yourself (if you are) to minimise the amount of cost you run up on your own account before your’re referred across to the NHS. But i might be way out of date here. Your GP shoudl be a godo source of knowing what’s what and who’s who where you are.
Alison
Hello. I found myself in the same situation in Jan 2021. My GP agreed to make a private referral rather than an NHS referral. The initial consultation was as much as we could really afford (scans are mega expensive) so I then had to request to be re-referred to the neurologist’s public (NHS) clinic to be sent for MRI from there. I didn’t have to see him again and again GP was totally fine with this and did the second referral very promptly. It does speed things up without a doubt and in that respect was worth the cost. As Alison mentioned already it makes sense to see someone who works in NHS too so you can transfer. I admit I initially wasn’t 100% comfortable with what I was doing but at the end of the day I’m on paid sick leave from a public sector job that I want to be well enough to get back to… so I rationalised it that way, if that makes sense! Good luck - hope you get booked in soon, the waiting is not easy.
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Thank you all so much for the replies, is so nice to be able to speak to someone about all this.
Pixie, well spotted with my typo, it should have said mid May not November, I’m making so many mistakes like that at the moment as my brains now working properly.
Anne like you I work for the public sector, I’ve been doing half days since December but want to return to normal if that’s possible.
Alison, thanks for the advice on being clear up front with them about not being able to afford to stay private for too long, I’m self funding this if I go private so really can’t afford for the bill to get too high.
Sorry another question, does anyone know how long the period between first neurology appointment and mri & LP normally is on the NHS, this was my other worry and what got me thinking about the private route
Hello Alison,
Can I ask how you’re doing now? I’m terrified that I will very quickly become disabled. I am right at the beginning of all this, and completely alone.
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In my limited experience, the neurologists I have seen do both NHS and private clinics. When facing one urgent problem I saw my initial neuro privately and it was a complete waste of time and money. I saw another neuro privately and he was brilliant and he then got me transferred to his NHS clinic where he was brilliant for free! (although timescales were not as good)
Good luck
Mick
Paul, is your appointment in 6 weeks or in November? if it is the latter, i would be tempted to go private. If it is only 6 weeks then maybe easier to wait. I saw a neuro privately when my referral through the NHS was rejected by what turned out to be the same nuero. £1500 in scans and appointments and i was moved back across to the NHS. Money well spent though in my view
I went private for my first neuro consultation and MRI when I learned I’d have to wait nearly a year otherwise. Then the neuro wrote to my GP to get her to refer me to him on the NHS. Money well spent to get me in the system quicker. First consult was £250 Then the scan £1000 and everything else has been done on NHS. If you go private, make sure the neuro is also working for the NHS so you can be referred to them.
Well, we went for a two-mile walk in the bluebell woods this morning, if that helps. I don’t know whether you think that’s brilliant or terrible: it depends on your perspective, doesn’t it?
It’s true that I need two hiking poles and also that my bad leg withdraws its cooperation at two miles, or sooner if it’s warm outside. But I’ll take that. And this is with RRMS that was highly active from the start (20+ years ago) before the highly effective DMDs like Tysabri were available. I’ve been on Tysabri 10 years now, and the damage that limits my mobility and hampers me in other ways happened before I started it. Someone being dx with highly active RRMS now has a good chance of getting on one of the highly active drugs before RRMS does as much damage in its RR stage as it did to me. There’s lots to be optimistic about for those dx these days, so don’t despair. The progressive phase of MS is going to be a whole other story, I know, but there’s not point in thinking too much about that until it happens. No one ever knows what lies around the corner, MS or not. .
Alison
I saw neuro on Dec 16th and had mris mid jan then got results at 2weeks but had to wait until march appointment for neuro to say she would like me to have SSEP tests and a LP but had SSEP 3 weeks later and then 3 week gap to the LP so it will have been 3 months since seeing neuro to complete tests. Not sure how long it will be until the results. That is in Bristol I guess different NHS trusts will have different wait times. Hope you are doing ok @Paulc488
Does anyone know of a good private specialist in Kent… Preferably the Medway area?
Thanks