Jules If I’m going away for longer, I’m going away for three months, what would I do about infusion treatment supplies?
Julie Taylor, MS Specialist Nurse For infusions like Tysabri, we can try and work round that. What I would probably do is try and organise with your infusion unit to have, just before you go away and then just for when you come back. But if you do need to have an infusion while you’re away, we have done it with other patients before who’ve travelled and gone travelling and sort of with your MS team and often your treatment co-ordinator would help with this, we’ve tried to find where their destination is they’re going, what would be their nearest infusion unit and we’ve actually made contact with them and organised for the patient to be able to go in and have a Tysabri infusion so they weren’t missing out while they’re away on holiday. It can be done, it takes a lot of organising and trying to find out, and the companies, the drug companies have helped us with that previously.,/r> So we’ve had patients where they’ve gone to say, Brazil, and we’ve managed to get a Tysabri infusion while they’re away. It took a lot of planning but it can be done and again, it’s that forward thinking a little bit and having a look round. But for us, our treatment co-ordinator played a big part in that, helping us to find where the destination was and then making contact with the infusion… so it can be done where you don’t miss out, but again, it’s speaking with your team and thinking about forward planning, but you can get your treatments abroad if you were away travelling for a long time, it can be organised.
Jules And how long would it take, you know, I need to plan in advance, how long ahead would I need to be thinking about that planning?
Julie Taylor, MS Specialist Nurse The longer, the better because there’s quite a bit to sort of really have to… we would obviously have to get information across to them and email things about, you know, where you’re up to with your treatment, all that information. You’re looking at months’ preparation rather than weeks really, and especially if you’re going to be moving around to different destinations if you are sort of travelling, then that does take a bit of planning, trying to find out where you’re going to be on a certain day and organising that. So, like I say, it is a bit tricky, but the longer the better, you’re looking at months, you could forward plan and then it can be sort of organised and then it would work a bit more smoothly then. I mean I think if you did it weeks, could be done – I’ve never done it in weeks, I’ve done it in months – but yeah, the longer, the better, I think, you can let your team know then they can start doing some forward thinking and planning for you.
MS Reporter: Jules
Expert: Julie Taylor, MS Specialist Nurse, Leeds Teaching Hospitals NHS Trust