I live just outside of Glasgow and I am a lucky one too, as I have great MS nurse support. I see my local hospital MS nurse every 3 months, or more often if I want and I can email her or phone her as often as I need, she’s excellent.
When I was on Copaxone, I had a nurse for that who I could see when ever I needed and who texted me and phoned me regularly and I also have am MS support nurse who operates from within my GP Practice who I see annually and who I can again email and phone as needed.
Writing all this down I realise that I am fortunate, it should be the same for us all.
It is a lottery all right - but it is not your postcode that makes the difference, it is the hospital that you attend, as well.
When I checked out the link that Boblatina provided, against information that I had, I found that the situation was more chaotic than I thought.
I attend a hospital 30 miles away (historical reasons) where there are two MS nurses (hospital only) and I have been seeing a nurse, and a Neuro at alternate six-month intervals. At my last Neuro appointment (attended by one of the nurses) it was decided that my next appointment would again be with a Neuro. I can phone or e-mail a nurse and get a reply almost by return.
My wife (different neurological problem) is under a neurology nurse at our local community hospital who does clinics and home visits both, and includes MS as one of her responsibilities. Appointments are again every six months, and emails are again answered very quickly.
Now comes the eye-opener - the neurology nurse is administered by my hospital, has her secretary in a different community hospital, and reports to a Neuro in a District Hospital in another County (12 miles away). If, however, we lived in that other county, almost in a straight line with that District hospital but closer to where we are now, we could self-refer to an MS nurse.
Now tell me that the NHS does not need sorting out - at senior management level.
Hi I see my MS nurse every 6 months, but I can contact her but email with any questions, she gets back to me the same day either by email or she will call me, great service.Deborah
I have a yearly appointment here in Aberdeen with my ms nurse, also got her phone number in case anything crops up between appointments but touch wood never had to use it.
I never see ny neuro ( my choice, sort of ) when I was dx he did say I could have a yearly appointment if I wanted it or I could just get on with life the best I can. ( his words). Was dx PPMS but when I told him I had symptoms going back 20 years he thought it was SPMS. He did say there was no treatment so i thought it was pointless having a yearly appointment.
I have a phone number to call for the local MS centre which has three MS nurses. You call them and leave a message, it might take two or three days for a call back as it runs on a triage system. You are normally advised to go and see your GP or attend A&E if things are really bad. They run a relapse clinic on a Tuesday so its possible to be invited to pop along to one of those days, but I have never been along or been invited.
That’s just my experience though, others may have had different experiences.
I think I’ve been really lucky to have an MS nurse wherever I’ve lived. The one I have now visits me every six months & I can contact her if I need to between visits, she always responds the same day.
I have only seen the MS nurse two or three times in passing - she’s been in the room where I’ve been having Tysabri but she doesn’t get involved and I’ve never had an appointment with her. I have been going to an MS exercise class provided by the NHS once a fortnight for nine years. The physio there gives advice about other people she thinks the patients should see, so probably performs at least some of the functions of an MS nurse. Yesterday the class attendees were told the class will be finishing for good in December.
For Robin (and others in the same situation), if you never see a neuro, you will probably never hear if the doctors discover a drug or drugs that slow down, stop or reverse progression in PPMS or SPMS. You might hear from your MS nurse but you would probably hear sooner from a neuro. I didn’t see a neuro for years after diagnosis in 1999, because there was nothing they could do for any MS. I didn’t know DMDs existed for years after they were being prescribed because of this.
Well my MS nurse told me she would see me twice a year. Well that never happens. I had an appointment in July ( was very surprised to see my Neuro) and that’s the first contact I’ve had since January 2013 !!!
I do not have a Neuro but I do have an MS Nurse who tells me I don’t need one. If I were to have any problems she couldn’t deal with then she would seek the advice of one. When I said I was concerned that I could miss out on any treatment that may be available she assured me that would not happen. I guess it’s an awful lot cheaper to employ a Nurse Specialist than it is to employ a consultant, I understand that unless you have RR with the relevant number of relapses to qualify for treatment, you will be lucky to have a consultant take much of an interest…or am I just being a cynic.
I have to add that I have not really found the need for a Neuro as my Nurse is at the end of a phone if I have any queries or problems, although the phone is only manned for a couple of hours 2 or 3 times a week and there isn’t an option to leave a message. Is it a case of which part of the country you live in.
We are very lucky that my hubby has a fantastic MS nurse (Glasgow). Appointments are usually every 6 months but more recently lately due to change of DMDs. We can phone e-mail her any time even if it’s just for a bit of advice or reassurance. She really fights to ensure hubby is on the right treatments and has also made referrals to physio, psychologist etc to ensure he is getting all the support he needs. No disrespect to GP but I trust her more about treatments a she deals with it day in and day out. I wish everyone had access to this support.
I see my fabulous neuro at least every six months - more frequently if he’s put me on new drugs and wants to check how things are going. Everyone with MS should have a neuro - even if you want to go down the ‘no drugs’ route, you should be aware of what you could be having and the up- and downsides of the drugs available. I think the MS Society will go into bat for you if you want a neuro but haven’t been offered appointments with one. Make sure you get a good one though - plenty of them are a waste of space or even worse than that.