Mike from the MS community: How do I know if I’m not getting the most out of my healthcare team?
Sally Fox, MS Specialist Nurse: I think this is a very difficult question to answer really, because it’s quite wide, and I think this is where trying to establish a good relationship with the team helps. I think obviously you need those offers of support, you know, at regular times.
And even if you don’t always need those, at least if you maintain that contact and then, like you say, we can always monitor you, even if it’s from afar. And I think, for me, I think one of the key things is, feeling safe to ask whatever you want to ask.
So, you know, having the kind of relationship where you’re thinking, there’s no such thing as a silly question, or if you wanted to discuss something more intimate, that you feel safe doing that with your MS professional. And I think that’s always a difficult one, you know, it’s a fact of life that you bond more with some people than with others. But it’s trying to forge through and feeling that you can ask that question.
If you can’t ask it of one healthcare professional, can they refer you on to somebody else who might be able to [inaudible] you in a more open and frank manner or have a more specialist area, knowledge of that area.
Mike: I suppose for me, from when I’ve experienced people that have had some problems with their healthcare teams, it’s always come about from engaging other people that have MS, because they might have a nurse that you might not get on with so well and you might think, oh well, that’s just how it is. So I think going out and trying to seek out other people that have MS as well in the area, you might be able to say, oh, there’s another nurse there, another neurologist there, that they’ve had a better experience with.
Sally Fox: That’s right, and I think that peer-to-peer support on so many levels is absolutely vital, because the other thing is, you know, your healthcare team know an awful lot, but they’re unlikely to know from personal experience, you know, what it’s like to live with MS, what it’s like to live with the uncertainty.
What it’s like, you know, I might say to you, I think this is the best disease modifying therapy, but you might not like the way it’s delivered or the effects that it has on you. So you need, I think you need more people to discuss it with and I think that peer support is vital.