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Personal Experience

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Individual myths

Danute Rus
Language: English
Country: Lithuania
Typology: health care professionals
I became an MS specialist nurse after 15 years a district nurse. I always had people with MS in my caseload and I found their care quite challenging. I also did a master degree in palliative care and this covered neurological conditions, including MS. When this MS nurse post came up, I knew I had enjoyed it. One particular patient really inspired me. While I was working as a district nurse I was asked to visit a young lady in her early 20s, who had a possible diagnosis of MS, to organize care for her at home. When I got there I found her lying on her bed, totally paralyzed from the neck down and unable to see. She and her family were distraught. She ended up being admitted to hospital. The whole thing was so traumatic and I felt there must be a better way of dealing with a new diagnosis of MS. But at the time I didn’t have the knowledge to smooth the way. I’ve since told her I became an MS specialist nurse because of her. I hold a weekly, multi-disciplinary MS clinic at the hospital where people can see the neurologist, or either a physiotherapist the occupational therapist. All patients with MS are offered an appointment there at least once a year. In addition, another MS nurse runs a clinic that prescribes beta interferon and other medicine-the disease modifying drugs. But we’ve been to make sure that those who don’t have disease modifying therapies get good services as those who do. Unlike many MS nurses, I do a lot of home visits. Many of my patients live out in the towns. In these rural areas there are specific problems, such as access in a day services. Some patients have to drive 20 km just to see a GP I like to try to see all my patients at home at least once I can picture them in their home environment and imagine the problems they might be having. The times an MS nurse like me are most useful are when people are going through a transition with their MS. For example, when people are finding diagnosed we spend quite a lot of time with them, trying to support them and their family through this period. Everybody reacts differently.That,s one of the challenges of the job. Because MS is so different for everybody, there may be common themes but there are no general rules. We try to give realistic information that’s appropriate to the individual and dispel the myths. We can’t give everybody the same.MS chat-it has to be tailored. I have quite a personal relationship with my parents. Because we,re quite small in comparison to other services in big cities we’re able to get to know our patients reasonably well. It makes us more approachable, which is our aim. With around 100 patients on our list there is no way we can call them all regularly. So we have to rely on them to feel confident enough to be able to pick up the phone to us when they have having a problem. They have direct access to us- they don’t have to be referred by their GP.We offer the same service for careers too. When I first started the job I did an induction course for MS nurses and I still go on study days every year. It is a good way to meet colleagues and find out what other nurses are doing. We are all different depending on where we work. There are simply not enough hours in the day to do all the reading needed to keep up with developments in MS.I look on the net every week and I am sent journals and other literature through the post.

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