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It used to be “diagnose and adios”

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Nikki Ward-AbelNicki Ward-Abel has been an MS nurse since 1997. Here she remembers how the MS Trust helped transform MS nurse training for the benefit of everyone affected by MS.

I became an MS nurse in 1997. Before this I was a sister on a neurology ward but I’d always wanted a specialist nurse post. Initially I helped people use the new disease modifying drugs although couldn’t see many people because of insufficient time and travelling took up so much of it.

People with MS have always come into outpatients, but they didn’t have any nursing input until after the mid-90s. If they weren’t suitable for any sort of medication, they often didn’t receive any follow up from the neurologists who felt there was nothing they could do for them. They used to call it ‘diagnose and adios’ – you were diagnosed in hospital and told to come back when there were problems. But by the time the person came back they had already developed substantial difficulties. We hadn’t been able to stop some of those developing because no one knew these people were out there.

So I suppose the type of care people got was very haphazard. No one could clearly articulate the MS services in those days because there weren’t any. Nothing organised, nothing concentrated on the psychological side and certainly nothing for the carers and family members. And they certainly didn’t have access to the treatments, information and resources we have now. People often felt lost and abandoned.

I first came in contact with the MS Trust in 1997/98. A colleague had been to the very first MS Trust conference and spoke to me about it asking if I was interested in coming to the next one. I felt extremely honoured when I got a place and I went along. And, apart from the year I went to Peru to fundraise for the MS Trust, I’ve been to every one since!

It was the MS Trust that first stepped in and began to concentrate on MS Nurse education; they had the vision before anyone else that more educated nurses resulted in more educated patients.

First came the national conference and individual MS related study days, they then designed the innovative programme of a week’s education offered to all new MS specialist nurses (the development module). It’s brilliant that it’s residential so everybody who attends can get focused for that time. When I started in post there was nothing like it. One day you were a ward sister, the next day you were an MS specialist nurse and there was nothing in between.

What the MS Trust has achieved is massive. People with MS can’t fail to profit from this. When I started you had to learn on the job, any way you could. There was nothing structured about it. Now you’re learning from the best – that’s crucial. The benefits of what the MS Trust provide is immeasurable. Of course most patients are better looked after than ever and can be confident in knowing that they’re being educated and treated by nurses and therapists who know what they’re talking about. In the old days people did the best they could – but that’s not good enough. People with MS deserve a lot more than that.

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