I wanted to ask just out of curiosity,(I don’t know if I am breaking any forum rules!)
There seems to be a wide range of appointment times and treatments available to people on here, I was just wondering where everyone is from. Obviously not address’ and so on but county or country.
I’m from Swansea in Wales, and have a good acces to my MS Nurse and Neuro, and a really supportive GP.
Guess I’m just really nosey!
Freckles xxx
You know what curiousity did don’t you Freckles
I’m from East Yorkshire. My appointments have been pretty good and I have a great gp I’m attached to a specialist ms centre in York.
I’ve lived in other parts of yorkshire and its been dreadful.
x
Hi, I live in north yorkshire. I have no access to a ms nurse. I’ve been told that if I need more support I would have to transfer to leeds or york. Any advice on which is the best between them? Lynn x
I’m in Dumfries and Galloway in Scotland and attend Dumfries royal infirmary x
Edinburgh, see my GP when I need to, my MS nurse every 6 months and consultant once a year. I can call my MS nurse whenever I need to for advice though.
I know nothing about York but Leeds is pretty good. But is it worth it to travel miles for every appointment? Plus much of the support will be unavailable, they probably won’t do home visits outside the area and courses etc will not be easily accissible. If you like your neuro I would think hard before I swapped. I live in Otley - at the outermost edge of Leeds and it is sometimes difficult to get services out to me so you would have no chance.
i’m in bolton, greater manchester.
my gp is great and i see him as needed. one of the nurses at my surgery takes a special interest in ms and sees me once a year.
i see a ms specialist neuro at salford royal. see him once a year.
also see a general neurologist in bolton. he is the one who saw me through diagnosis. i see him once a year.
i see a ms nurse at salford royal but that is instead of seeing the ms specialist neuro.
i see a ms nurse in bolton every 6 months.
maybe i’ve been very lucky with the postcode lottery re ms but i’m not lucky at all with the national lottery!
i reckon i’ve had my moneys worth from the NHS
carole x
Hi I’m from Newcastle Great neuro. For 2 1/2 years saw me every 6 months. Now pushed me back to yearly which must be good. Also arranged MRI for me when I was trying to get on a stem cell trial - didn’t qualify. Also as I live cross borders I have access to 5 MS nurses - very greedy!!! Have done home visits. Yearly reviews and also I can phone if I’m in a panic. However 2 of the nurses their funding is under review and may not be renewed. Hugs Min xx
also bolton neuro voices is a group of neuro physios who passionately believe in the benefits of hydrotherapy.
sadly they have to raise their own funding to top up a small grant from bolton council.
hydrotherapy starts again this monday.
carole x
I’m in Newcastle too.
Mixed experience. Neurology dpt is a National Centre of Excellence. It is very big hospital, covers a wide geographic area, very very busy. My experience so far has been that they seem to have a strong focus on Parkinsons, but MS seems to be maybe less well catered for. Was recently told by neuro secretary that assessments for probable MS are ‘routinely breaching 18 week point and beyond’.
First appointment I had was one of those nightmare neuro consultations you hear about. But was later referred to MS specialist, who seems professional, courteous, reassuring, helpful. Feel like I’m in safe hands.
Have telephone number for MS nurses, but they are very over-stretched and can be difficult to reach; answer-machine states they will try to get back to you within 2 working days,but the first and only time I called I waited over 2 weeks for a response - I had to phone back quite a few times. When they did get back in touch, they were really nice, prescribed medication and gave good avice. they appologised for delay, and said they were in the process of recruiting a secretary for the ms nurses, so future delays should be less.
Have been told they run an emergency neurology clinic once a week if situation is urgent. My GP is lovely.
Hi I’m from Plymouth,
I haven’t been told about an MS nurse, but from what I have been told from a few people I have a very good consultant, and my GP is good as well.
Mel xx
I’m from Northants. My neurologist has booked me in quickly after dx and two MS Nurses sound nice Xx
I’m from Northants. My neurologist has booked me in quickly after dx and two MS Nurses sound nice Xx
Im from the same place as you freckles
Half my post disappeared then
Half my post disappeared then
Thanks all for the replies, we seem to be a pretty lucky bunch when it comes to our healthcare professionals. It does seem to be a bit like a postcode lottery though in some places. (I play the postcode lottery and haven’t won a bean, no celebs have knocked my door with a giant cheque! )
I know of a father and son who both have ms son lives in Cardiff and sees a neuro regularly, Dad lives in West Wales and only deals with ms nurses.
Here’s to wishing that we could all win the real lottery!
Best wishes
Freckles xxx
Hi Freckles
I’m in South West Devon. My back window looks out onto a Tor or two. My Neuro Consultant is very good. Has published quite a few papers and holds a professorship, so I’m very grateful that he knows a thing or two about MS. Only problem is that I’ve only had one appointment with him- at the outset and that was to discuss treatment. I think he will remember me though-lol. Since then it all gets passed down to MS Nurses assigned to the county. There are two MS Nurses to look after 1,500 patients approx.
My MS Nurse has 752 patients! She only remembers me because a) I’m a little eccentric b) I’m doing incredibly well, considering my medical history, c) I am one of the Alemtuzumab (Campath) patients. Apparently, there aren’t too many of us, so we’re easier to remember and d) I’m still kicking the rear end of MS-thank the Lord!
The GP practice is another matter. I probably know more about MS than any of them. Thankfully, I rarely have reason to visit the surgery, so I’m not too concerned.
Hi melm, Hobart or Zieciek?
Happy New Year all
Tracyann xx
Hi Tracyann,
I see Prof Zieciek at Mount Gould, I’ve seen him twice now, I found him really good, couple weeks ago I was meant to see him but saw someone else (don’t know who) because he was off doing research.
Seeing him in June next and talk about a trial I can possibly do.
Mel xx
I see my MS nurse every 3 months but can phine and they get back in the next couple of days, she is very good. I see my neuroloigst once a year in treliske hospital and the nurse in a smaller hospital in my town. They are both very fair and informative. I live in Bodmin, Cornwall