Hello,
I have been referred by my GP for a suspected MS to the National Hospital for Neurology and Neuroscience.
Does anyone have any experiences with this Hospital?
Thank you,
Yes, I am under the care of an ms specialist there. In my opinion one of the best ms specialists in the country works there and people under him will know who I’m talking about. I requested a referral to that hospital as my local hospital I felt was a bit naf on he neurology front. I saw 2 neuros locally who I didn’t really feel took me seriously. You are in fantastic hands!!!
Hi Sarra
You should get the best possible care at the National. Such things as arbitrary rules made by local CCGs don’t seem to apply (so if your local CCG says something is too expensive it won’t matter!)
I used to see the wonderful Professor Giovannoni there. It’s a funny old place, one side of the square (Queens Square that is) is modern and up to date, the other side shows it’s age. (Unless they’ve done a serious amount of tarting it up!)
Good luck, hopefully you’ll get through the process or diagnosis or non-diagnosis as speedily as possible, and can resume your normal life without the shadow of MS looming over your shoulder.
Sue
Thank you both for your replies. That is all really good to hear. My experiences with neurology services have been somehow mixed so far but this was when I used to live in Kent. My GP ( a lovely, young lady doctor) immediately recommended this hospital, after going through my symptoms and performing a neuro exam. I am still ’ in limbo’ in terms of my diagnosis but things do seem to suggest most likely MS. I believe they will carry all necessary tests to confirm/exclude MS there? Does anyone know what kind of waiting times there are? I understand that this is a very busy hospital, with people being referred to from the whole of UK so I am assuming the waiting times are long.
I was referred to the hospital on October 3rd last year and has my day admission date through the post within a month. Had mri with and without contrast plus a VEP test, and lumbar puncture all done on 20th December and had he results on 20th Feb this year. From referral to results less than 5 months!
Hello again,
That is good to hear. I don’t think I will be agreeing to another LP as I have a very bad experience with this. Unless it is absolutely necessary but of course that will depend on the results of the other tests. I checked their website and they do seem to have a great MS service so I am hoping for a good care.
May I ask Sue what is CCG? I have never heard of them… Is it something to do with Triage system?
May I ask - Anonymous - whether they did your MRI of Brain only or spine too? My GP thinks I might damage in the lower part of my spinal cord as my legs and pelvis seem to be affected. Also did you see the consultant before your tests or after?
Sorry, should have explained Sarra, CCG stands for Clinical Commissioning Group. This is what replaced most PCTs who run the NHS in your local area. The CCG are given a certain amount of leeway as to what they must provide to patients in their area, and what they don’t. So access to disease modifying drugs is not something they can refuse, but some other things they can set rules for. When you are being treated at the National Hospital, you’ll generally get whatever you need. In addition, if there are any promising new drug trials, you could get the opportunity to join the trial.
Sue
I saw him privately for my initial appointment then he wrote to my GP and asked her to refer me. I had to go in and see her and discuss the referral but she agreed thankfully. I didn’t see him again until February when I got results. I had mri of brain and spine. The whole shabang was done. I very much felt that he wanted every box ticked and as Sue says, I didn’t feel coat was an issue whereas at my local hospital, it was much more of a fight. Best thing I did. I see Dr Chataway whom I’m sure you’ve read about on uclh website.
Coat = cost lol.
Hello again,
Thank you for clarifying Sue. Now I understand.
My GP was very helpful and said she can order the MRI scans for me but suggested that it will be better if they were done in the same hospital where I see my consultant. What a lovely lady - I have not expected to be treated so seriously. Though the process of getting referred back to neurologist and for the same tests again will be longer and will require at least couple of visits back and forth before I will be referred. Past experiences included toing and froing to GP’s with waking up with numbness of arms hands and legs only to be told to change my mattress and that I am sleeping in a wrong position. Ha!
Anonymous - thanks for the info. Yes I heard of Dr Chataway and only great opinions. I don’t know yet who I am going to be seeing there, as still waiting for my appointment but it seems like the do have a great MS specialists. Fingers crossed.
Have you already had mri and lumbar puncture done that showed anything?
Yes I had an MRI and LP around a year and a half ago which came within the norm. It was done in during my first ever ‘attack’ of the symptoms. I had also had blood work done which excluded other possibilities.
My consultant said that we need to ‘wait and see’ and that the time will tell and that I should observe the symptoms and come back when they reappear.
The initial ‘attack’ went away and I have been more or less fine for the past year and a half, with some minor symptoms getting worse mostly if I was too hot, but I had another accumulation of the symptoms recently so decided that it is time to go back to GP to reinvestigate as due to my nationality, gender, age and taking into account the nature of the symptoms and their remitting appearance it is likely it is MS in early stages.
I am aware this is a likely possibility but of course I first need to see what the tests say and go from then.