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"The Advanced MS Champions will be able to connect everything up"

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This year the MS Trust has been working with city philanthropists The October Club to raise money to pioneer a new role in MS teams: Advanced MS Champions. This is the culmination of our work over the past few years to make MS care fair. First our research established that people with advanced MS were often missing out on specialist support. Then we brought together the MS community to build a consensus on how we could tackle this problem. Now we’re going to be funding six new posts we believe can transform care for thousands of people living with MS. But how will our new Champions make a difference? We spoke to Lyn, who was diagnosed with MS over 20 years ago, about how this support will help her.  

I was diagnosed with MS in 1992, aged 31. For the first 12 years I was relatively unaffected, and tried to carry on as usual at my job working for the government. But unfortunately I took a very dramatic downturn in January 2004 . I never went back to work again and I started using a wheelchair soon after.

I’m lucky in that I get a lot of support from my neurophysiotherapist, Jody. I have a standing frame at home, and she has trained physiotherapy students from the local university to come and stand me. She also gives me lots of useful tips, like the best seating position in my chair, which I can then pass on to my carers.

With my condition, standing when I can is really important. It cuts down my spasms and my legs feel so much lighter – my carer always notices a difference when I’ve been using the standing frame. It’s also lovely just to be able to stand up and have a conversation with someone and not be crocking your neck all the time! I think it helps with psychological wellbeing too, it makes you feel better about yourself, as when you’re constantly in a chair, just to be stood up for only half an hour makes such a difference

"When you have advanced MS, it’s easy for people to say that there’s nothing else they can do for you. I think having an Advanced MS Champion, on your side, will be a really good thing"

I’m fortunate that I have some support and am able to pursue things off my own bat, but I know some people with MS won’t be in a position to do this. I think people can quickly slip through the net, and just end up sat in a chair, slumped over, not doing anything much. This is why I think the Advanced MS Champions project is great, because these Champions will be able to suggest various things and connect everything up. They can bring things together, medical and non-medical, and make sure that person is getting access to everything that can help them.

When you have advanced MS, it’s easy for people to say that there’s nothing else they can do for you. If you haven’t got a supportive family you could easily feel isolated very quickly; sat at a window watching the world go by, when you’ve got nothing. So I think having somebody on your side, like an Advanced MS Champion, will be a really good thing.

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