Anna is 29 and was diagnosed with relapsing remitting MS in 2012. She has been taking Avonex, but is now reconsidering her options. She volunteered to test drive the new MS Decisions and was very impressed.
"I found MS Decisions really clear, really easy to understand.
Instantly when you go into the website, it’s inviting. It’s not clinical, it’s really friendly. Even the font is friendly! The layout is really clear to understand. One of the things that I immediately found useful were the tick boxes which help you filter your options. So it can in effect take into account your lifestyle: how many times a week do you want to be taking the medication, whether or not you feel able to inject medication or whether you prefer it in a tablet form or another form.
We did joke about it at home, we said in a way it’s a bit like buying cushions from John Lewis... Which is a good thing! Because it’s a serious decision, but you want it to be easy and you want it to be straightforward and normal. And this does make it normal.
It seemed to me that if you were faced with this decision it would bring you down and you’d think – OK, I can deal with this.
Being able to see different drugs side by side was really useful as well. You can see what kind of medication it is, how often you have to take it, what some of the common side effects are, and what some of the rarer side effects are. This is much better than the original MS Decisions site. Before, all the information was there, but you had to sift it out yourself. I also like how it sits within the MS Trust site: rather than it being a separate thing, you can go back into the A-Z of MS, look up things that are unfamiliar, and find out what other people have experienced.
To have information like this accessible on a smartphone would have been really useful for me. Just to look at on the go really. I use my phone quite a lot to check emails and to look at things. I think for people who don’t want to sit at home with their laptop out, in front of everybody, looking at these things, it’s a really good discrete way of looking at. I’m all for being open and talking to people about things, but obviously not everybody is. So you could be sitting on the bus to work, and you might have a thought, and you could have a look. It would be accessible if you were on the way to the hospital on your way to talk to someone. You could look at the info again, and re-establish what it is you’re looking at, more of the facts.
It makes it really accessible. If you’re not comfortable talking to friends or family, it can be quite a discrete thing. You can have a look in private.
I’d recommend it to anybody with relapsing remitting MS. Whether or not you already think you know what treatment you want. I would recommend it because the information is impartial, it’s gone through a filtering process already, so you’re told the things you need to know. The worst thing I found was to look up particular drugs online because you’re given so much information. Not all of it is true. You find testimonials that aren’t quite right. Some of it isn’t impartial, it’s from the pharmaceutical companies and they’re biased towards particular medications. I don’t feel that way of doing it helps with making a decision. I think you just need the facts and you need it to come from somewhere that has your best interests at heart, that’s there to help.
I think that having the information there would help you if you were going to the neurologist or your MS nurse who was maybe helping you make that decision, if you’ve done your homework beforehand I definitely think it would help. and the info would be correct as well. And they’d be able to reassure you. When you go and see a neurologist or specialist they sometimes bombard you with info. To be able to come home and have a look at MS Decisions would help you understand what you’ve just been told. When I first came home out of the hospital having been diagnosed my head was full of what I’d just been told. I couldn’t remember all of it. My head was spinning with all this information. To be able to then go onto a good website in your own time would’ve been really really useful and really helpful in making that decision."
MS voicesWould you like to get involved in the work of the MS Trust? We’re always looking for the input of people living with MS to feed into out policy work, help us with media case studies or to review our information resources. If you’d like to volunteer your time or expertise, send an email to firstname.lastname@example.org, with a few details about yourself and how you’d like to help.