Mike from the MS community: What does the ideal journey and relationship with my primary care team look like?
Sally Fox, MS Specialist Nurse: So I think the first thing that’s really important is that you need to develop an open relationship with your MS team and to develop confidence in them as a team. I think your journey will develop with them as things go on.
I think as a general rule, and this will vary, but the ideal would be an annual review from your consultant neurologist and then as a minimum you would be offered a six-monthly review with the MS nurse, so you would effectively see your consultant neurologist at one end of the year and then six months later you would see the specialist nurse.
Now, where I [inaudible] we’re fortunate in that we’re able to be flexible in amount. So you might find when you’re initially diagnosed that in fact, particularly from the MS nurse, you’ll need a lot more input around that, and then as you get to grips with things, that might space out a lot more. Obviously, if you are on any form of disease modifying treatment that will also be governed by how often you need a blood test and a review associated with that.
And then, you know, we in common with a lot of MS services will provide a phone service. So outside of those normal appointment times, if you were worried about symptoms, if you had any questions, if there was anything new coming up, you could ring us and we could either deal with it over the phone or, you know, we could bring you in for an appointment.
So I think there’s that there as a minimum, but I think there’s a lot of flexibility around that. And obviously if you think you’ve got symptoms of a relapse we would then get you in to see one of the medical team as well outside of those review times.
Mike: I suppose if you try and have a good relationship with your clinical team, it’s important that you understand what’s actually been happening with your condition, so you’ve been taking some records and making sure that you’re keeping diaries of things and how you’re feeling and those sort of things. So you can have a conversation to get the most out of these relationships with your healthcare professionals.
Sally Fox: Absolutely, and I think you’ve hit the nail on the head there with the diary, I would always encourage people, particularly if there’s something specific like a symptom that maybe comes and goes but is unfamiliar to them, to keep a diary, and then we can use that to identify triggers.
I always like it when patients bring lists in because that way you can go through things in a systematic way and sometimes I think you might come in with a few things that you’d like to discuss, you end up in a deep conversation, you come away thinking, I completely forgot to ask them about, you know, whatever.
So if you brought a list in, you know, (a) we know how long we’ve got to devote to each different thing and (b) we can make sure that we’ve covered everything to everybody’s satisfaction, or at least begun the process of doing that.