I was just just wondering if anyone knows the protocol if I was referred to a new neurologist?
Mine is a total waste of time he has been since day one! Then 2 years ago I saw a locum who again misdiagnosed an obvious MS symptom and was so patronising it was untrue. I ended up putting in an official complaint and having him withdraw the letter he had sent to my GP. That took me nearly 12 months to do. Then yesterday I went for an appointment to find the same locum there. Who was just as patronising, totally wasted my time. Asked me the same questions as my MS Nurse would and then explained to me MS and it’s diagnosis once more. I ask you, I’ve had this years I knew more than him!! Seems he’s been a locum for ten years so he thinks he’s permanent!
so what I’d like to do is change Neuro but I know it would have to be someone out of the area. Does anyone know what would happen about regular check ups with MS Nurse and rehab team if that happened. Would I still be seeing the same as I do now or would I need to change Nurse, physio, psychologist, etc too?
I’ve not been in your exact situation, but I do see a neurologist outside of my area. My MS nurse suggested I get a referral from my current neuro to a different one in a neighbouring PCT because he was an MS specialist and very keen on all the new DMDs (this was about 7/8 years ago so at the time Tysabri for eg was quite new!) I still kept the same MS nurse, continence nurse and community neuro team, which encompasses OTs and physios. The new neurologist later referred me first to one neuro in a completely different area and then later back to another rehab specialist neuro in my own PCT.
I’m now thinking about changing again, to ask the rehab neurologist to be my full time neuro as I’m no longer a candidate for DMDs or any other new treatments that come up.
This is of course a different scenario to yours, but I think it shows that it’s not a problem, once you get the referral. Perhaps your best bet is to speak to your MS nurse, see if she can recommend a way forward. Otherwise, find an MS specialist in a nearby CCG (replaced the old PCTs), even, tell us all roughly where you are, and ask people to PM you with their thoughts about nearby neurologists. Once you have the name of someone, ask your current neurologist, maybe in writing, to refer you on. If your current neuro is not an MS specialist, you have a tailor made reason for asking for a change. If your current one is a specialist, just be honest, say you’ve not felt that your current needs are being met and would they consider referring you to Dr X.
Hi Wobbly, I am under a neurologist in a different area. I’m from Wales & I am under the MS team in Liverpool & Chester. My consultant from Wrexham referred me as these were the specialists in MS & Wrexham wasn’t. I do have to travel a bit, but I am being very well looked after so it’s worth it. I have mentioned where I am from because Sue’s right, others can tell you how they get on out of their area. Don’t forget, you are entitled to the best care you need, don’t let some idiot put you off, their not all like that. Good luck Tracey x
Thank you for your replies guys it gives me hope that there is a way forward I appreciate you sharing. I’m always happy for people to pm me with suggestions so please do.
I’m in the West Midlands area which I know is large and my Neurologist claims to be an MS expert but the truth is he’s more into MND but has an MS team and that helps him claim that. There locum I saw that works with him has appalling knowledge and sounds as though he’s read the MS Trust booklets and he’s reciting them! Plus their knowledge is very dated. I have spoken to several others who are about to do the same as me and others who feel they can’t as they can’t travel. Which is sad!
I’m looking at a Neuro in Manchester at the moment but it’s a long way away so I’d be grateful of recommendations of anyone nearer.
Had posted but think the aliens got it.so the Neuro my g p referred me to actually sent me and my m r I scans to a neighbouring health board as new one was one of the countries leading m s experts.was so glad and it was only 12miles away.
Thanks Mike, but the MS Nurse thinks he’s wonderful, he is very charming! But that’s not what I need, I was hoping for a recommendation as it would be nice to find someone who listens to you. My MS has not followed a ‘traditional’ pattern and I need someone who recognises the sometimes obscure symptoms.
I had a couple of “not very good / rubbish” neurologists but after a recommendation from a mate who also has MS I went and saw a guy privately who did not blow smoke up my a$$ and actually listened and who is VERY honest about my options. He then told me that his NHS practise is in London. He was able to arrange a referral. I have to travel but at least I am comfortable and confident in his care. Not a perfect answer but my point is that if you can get a recommendation, it should be possible to see a different professional. I am sure that not everyone would like the guy I see (he can be quite blunt, which I describe as refreshingly honest)
Hi wobblylegs, I changed my neurologist - I just asked my GP.
Now I travel 15 miles to an MS Centre, but my MS nurse and rehab team are from the local hospital, which treat mostly elderly folk.
I can self-refer to them when I need help. So I can manage myself locally. I’m happy with this arrangement.
To be honest, I don’t think travelling 15 miles to the MS Centre has made any difference to my treatment or my level of disability - the neurologists cannot really help - they just monitor your decline.
How far do you want to travel for this service??
So why bother going at all we might ask ourselves? I do ask myself this.
I know neurologist are not there to hold your hand and give you a hug - it’s just diagnose, “treatments” and managed decline, which can be done locally.
For the emotional support stuff, if that’s what you need, see your MS Nurse or GP.
Thanks PJday, I think I agree with you mostly as that is what I’ve chosen to do for the many, many years. But I am now getting very tired of having to see other consultants when my Neuro says that, yet another issue, is not an MS symptom! Only for the other consultant to confirm that they see lots of MS patients with the same issue and it is definitely an MS symptom. When I’m feeling better, I then do my own research and discover that it is indeed an MS issue.
I’m happy to do my own research but when your in the middle of a relapse it’s not what you need! Plus I’ve become so disenchanted that I think I’m quite alienated towards him now and I definitely take issue with the locum running the MS Nurses clinic in the manner he did. If you can’t trust your consultant the relationship just won’t work. So it’s not a case of hand holding but not trusting his judgement.
I feel like I’ve had to travel many miles just to educate my Neuro about the sometimes more obscure aspects of MS. The MS Nurses only support that as that is the teams approach. If I look further afield I have to travel 35 miles in one direction of 50 miles the other just to get to see a different Neuro. Even my GO wrote to him once to tell him that what I was suffering was an MS issue!
I’m okay coping with just not seeing him, but it’s scary when you are in the middle of a relapse. Sometimes you just want them to have some knowledge of treatments and alternative therapies to help manage symptoms. Just simple things such as I asked him his thoughts on B12 for fatigue. As many neuros now know that blood levels of B12 mean nothing in MS and they give a B12 injection just to see if it helps. As it’s water soluble, you’ve lost nothing because if the fatigue gets better you know you need it, if it doesn’t well… His answer was just take a multi vitamin that should do the trick!! Shocking!!
I think I may just have to use my GP more, who seems to know this stuff.
I have found my GPs, and they are women, are much better at helping with symptoms management, and they can write this stuff into your care plan. I only attend the neurologist’s MS Clinic once a year - thankfully.
Rehab Team Home Visits:
As I mentioned, when I have a relapse, I can self-refer to the local rehab team, which is apart of Virgin Care.
They gave me a card and case number with phone numbers to call if I need physio, fatigue management, OT help or any help with bladder etc.,.
I’m pleased with this help, because they visit me at home - I don’t have to go for appointments at all. Wonderful!
Ask your GP about this service or see if it’s available in your area.
There’s a similar system where I am. They’re called the Community Neurological Team and comprise of physiotherapists, OTs, MS nurse and share office space with Bowel and Bladder nurses. They all do home visits and I can self refer to any part of their services. Actually my B&B nurse has just started work as the new MS nurse. Which is excellent news as she’s brilliant.
I’m wanting to see a new neurologist - I know i see my Gp to do this - but where shall I go? I am fed up of my current one who tells me there’s nothing available to me (I have SPMS) and I need to regularly ask for an appointment (I never get offered a new one) and the MS nurse doesn’t return my calls. I’m in the South West but can travel (e.g. to London, I’ve been told UCL is good) Any recommendations?