Does anyone know the criteria for having regular appointments with a MS nurse please?
Is it that you have to be using disease modifying medication?
Hi, I don’t know if there is any particular criteria. I see my ms nurse every six months which I have done so since my diagnosis in 2005. I started on dmd’s in 2006 but stopped in January this year because I still had relapses and my ms in now secondary progressive. I still see my ms nurse every six months. Hope this helps. I suppose different hospitals have different criteria aka postcode lottery. Anne x.
Hello,
Its very much a “ms lottery”. I don’t have any apointments with an ms nurse, i see the neuro every six months due to being on dmd’s. Some people get home visits and regular meet ups with a ms nurse. Some not so lucky, all depends on the hospital i think.
Darren
i see my ms nurse every 6 months, my ms specialist consultant once a year and my neuro once a year.
looks like i’m lucky in this lottery
carole x
I am not sure there is a criteria to be met, more likely just pot luck if where you live has a nurse or not. Where I am my nurse comes to my house and leaves it up to me how often she should come. I guess I’m really lucky, think its very sad that not everyone gets the choice. Could you ask your neuro or the secretary if this service is available to you?
Since my dx i have have an appt with neuro or ms specialist every month. I have appts booked until august at the moment
Hi I know I’m very lucky and the exception …I have a community MS specialist nurse who comes to the house whenever I need her and a hospital MS nurse practioner that I see every 8 weeks or so. It’s worth contacting your local SS asking for adult social care and finding out if there is an MS community nurse in your area…that’s how I found mine. Xx
Think I might be another lucky peep, I was automatically referred to my MS Nurse as soon as I was diagnosed and have had regular appointments to see her ever since, even though I’m not taking any medication, and if I ever need some advice, or would like to see her a bit sooner, then all I have to do is phone her. I think it’d be good idea for you to enquire about getting an MS Nurse as she can keep an eye on your symptoms, spot any new ones and do something about them before they become too much of a problem, preventing a trip to the doctor or hospital.
I’ve never had regular appointments, but she does answer my emails and a couple of years ago I did have a full hour with her just to talk things over.
She says I can contact her any time and she usually sits in on neuro appointments.
I’m not on DMDs (ppms) so I don’t think that makes any difference.
Pat x
I think it does depend on the availability of a nurse where you live. I see the nurse at the hospital every 6 months because I am on DMDs but I don’t see the ‘local’ nurse unless I request it. She is about 40 mins away so it takes at least a week before she can get to me so I tend not to bother her. However, a friend of mine lives in the same town as the local nurse and has a routine visit from her every month at home. My friend is not on DMDs and it’s more of a catch up to see how things are going and whether there is anything she needs. I think it’s just easier for the nurse to fit her in because she is so local.
Tracey x
I’m of the impression that the MS Nurse thing depends on where you live.I live on the Wirral and get my annual 15 minutes of fame with a Neurotic at Walton Neuro in Liverpool.The Walton catchment area is from Holyhead to North of Lancaster and as of two months ago there were TWO MS nurses covering this area.
There are other nurses operating in this area,but they are all as busy as the busiest of bees on Buzzy Bee Day.Walton is a very caring place in that all internal signs are in English and Welsh in case you are one of the non-existant people who only reads Welsh.I wonder how much the duplication of signage cost, and how far it would have gone towards funding a 50% increase in MS Nurse posts.
Silly me,I’m day dreaming again and shouldn’t be spouting off in your thread
Good luck,
Wb
The varying ms nurse access is a great advocate for the MS Society’s Ms Lottery.
Darren
l find MS Nurses as rare as ‘hens teeth’. ln 31yrs - l have yet to see one. Did go 26yrs in between neuro appointments. Now l get my 5mins of fame annually. Thankfully, my neuro is in favour of Sativex - and vitd3- and did arrange a bone-density scan.
F
We have atleast 3 nurses in southampton and i thought the service was bad to start with. I dread to think what some you on here have to put up with.
Hi,
I first saw my MS nurse back in January, after my Neuro confirmed that I could start DMD’s. I started Copaxone in February and saw her one month later, then 2 months later and I’m seeing her again in 3 months. I see her to have bloods taken and a general chat. I was under the impression that once you start on DMD’s, you have to see the Nurse in order for bloods to be taken and I believe that’s one, three, six and twelve months? It could of course, be different in different areas? As someone else has said, MS lottery!
Sarah
I have an MS nurse who I’ve only met once by chance when I was in for IV steroids and she was on the day ward. I can call her anytime though.
I was dx in Dec and have a neuro appointment in July.
I’m on Copaxone and the Copaxone nurse calls to see me now and then to see how I’m getting on and she texts me too on occasion.
Not sure how frequent appointments will be as this will be my first since the appointment when I was diagnosed.
Very true, we are just in Cheshire off the Wirral & my wife (SPMS) hasn’t seen a consultant since 2011 or an MS nurse for that matter 
I’ve managed to get her an appointment in early July!
We have two ms nurses in Gloucestershire who are really good. One deals mostly with the practical side of DMDs - training how to administer, managing side effects etc. I see a ms nurse and ms consultant neurologist once a year. They don’t do home visits - only in exceptional circumstances. So in answer to your question- ms nurse app’t is once a year. I am unsure of criteria controlling frequency of appt’s. It has been interesting reading of the variance in MS services around the country. I hope this thread continues for a while. :-). R.
We have 3 in Southampton. Lucky enough to see 2 of them every 28 days (Tysabri). But I also get an in clinic appt with one every 6 months and I can also phone, text email whenever I need them. They are all really good.
Its a shame that not everyone gets the same.
I hope that the site lets me post this without swallowing my post like it has done recently. It is a very useful link that was given to me by my former MS nurse when I lived in London.
The MS Trust website has a very useful interactive map that shows what services - including nurses - are in your area.
It is really quite shocking to see how badly served a lot of areas are - Scotland seems very sparsely covered for example. I know we all know that there is a postcode lottery but seeing it in black and white really brings it home.
There was an item on my local BBC news the other night (part of the MS Society’s Postcode Lottery campaign that really brought it home. A father and son who lived in different counties of South / South West Wales both had MS and had incredibly different levels of support. The father (who lived West) was now in a wheelchair and he hadn’t seen a neuro for over a decade and had never seen a MS nurse. The son, who lived in Cardiff saw his neuro (who is likely to be the same one I have seen too) twice a year and saw his MS nurse every 4 months. Amazing! (Mind you, the father did live in a very beautiful place but, as my dad would have said “the view won’t feed you!”