What can I do if I’m worried that I’m not getting the best MS care in my area?

In this video Mike interviews Sally Fox who is a MS Specialist Nurse. The interview was filmed by Shift.ms

Video transcript

Mike from the MS community: What happens if you don’t have good access into a neurologist or an MS nurse where you are in a more remote area, what are your options there, what would you recommend people do?


Sally Fox, MS Specialist Nurse: I think the, I think one of the first things to say actually, is that if you’re having the type of relapse pattern that makes it necessary that you need disease modifying treatments, that’s going to happen anyway, because not any neurologist can- you have to be a specialist prescriber as a doctor to be able to prescribe these, so you would naturally be sucked into the nearest service to you, I think.


Second, as for getting advice when you feel that there isn’t an awful lot in your area, I think that would probably be along the lines of asking for a second opinion and I’m sure your neurologist, who might not be an MS specialist, would be more than happy to refer you for that specialist second opinion.


Because I think a lot of neurologists are aware of their limitations as well, so it’s not something you should be frightened about asking for.  Although it might seem intimidating, you know, a good neurologist shouldn’t be intimidated by that.


Again, I think technology makes it easier, so there should be, I suppose the more remote you are, the more difficult it is, but again, it’s just trying to see if you can get yourself into an MS service provided by a nurse in a neighbouring area and you might come under them.


And again, sometimes if travel is difficult, and for some people it is, whether that’s because of mobility issues or there just simply isn’t the transport, sometimes we can deal with an awful lot over the phone and I think sometimes that phone contact, you know, the value of that is sometimes underestimated.


It’s still a link and it’s a valuable link. There are lots of charities like the MS Trust and the MS Society might be able to put you in touch with, you know, MS nurses who may be able to help.


If you are on a disease modifying treatment, quite a lot of them will have a helpline service, so if you’re not able to access the MS nurses directly, you can access different ones provided by the drug companies as well.


So there are lots of different aspects. And again, going back to places like Shift.MS, you know, getting advice there about what people have done in similar situations. If you look enough, you know, there’s sometimes the possibility of remote clinics as well, and I think that’s one of the things that is expanding, but slowly.


Mike: That’s something, you touched on a good point there about the drug company helplines.  I’ve been through a few different treatments myself and never really contemplated it. I had an engagement with the most recent drug company that are providing a treatment to me and they were beyond helpful, they really care about the people that they’re providing those drugs out to and they want to make sure that they’re having a good experience.


Sally Fox: Absolutely.  So yeah, I think they’re a resource that people need to be aware of and need to utilise.

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