Ana sayfa | MS’in Derinliği  | Conference reports |

Schering AG hosted the Fourth International Nurses Workshop on Multiple Sclerosis in Prague on 31st March 2001. Following the success of previous workshops, approximately 360 nurses from 19 countries participated, many of whom had attended previously.

Feedback from the previous three meetings led to the development of an all-day programme involving much more specific issues in MS care. The conference provides an excellent opportunity for nurses from a variety of backgrounds to share experiences and expertise.

Following on from last year, the concept of management of people with MS was discussed in general and in relation to specific areas of care. Nine speakers covered topics such as sexual and urological dysfunctions and psychological counselling. In addition, recent additional recommendations in treatment with ß interferons were presented. Although many of the talks were on very different topics, all the speakers agreed that education of the patient and improved communication between healthcare professionals and people with MS are vital in instilling hope and providing better quality of life.

The first speaker was Eva Ganglberger , who introduced the new Austrian working co-operative called "Patient Care in MS". After describing how the group was founded, she outlined the main work that is carried out by the group and their goals in improving the quality of MS care. She went on to explain the roles and responsibilities of MS nurses and the attributes they need.

Eija Luoto provided updated information on the ACT (Action for Choices in Treatment in Multiple Sclerosis) programme. She outlined the general principle of the ACT programme in providing people with MS an opportunity to improve their understanding of the disease and to empower them to evaluate and consider coping options. This will help and motivate them to understand the relevance of therapies with proven scientific credentials. Following on from last year, she presented the extremely promising results from pilots of the national materials in France, Germany and Greece. Finally, she spoke about the current interest in producing an educational pack for nurses to use in conjunction with their patients.

Cindy Phair gave an overview of nursing management and follow-up of patients with MS in the USA. She explained the six divisions of the Fairview MS Center, one of the first comprehensive MS centers in the USA, and described their aims in providing care for people with MS. Outlining the role of nurses as educators and now counsellors, she discussed how knowledge can empower the patient and their family and carers, and provide hope.

The conference then changed pace to focus on some specific aspects of MS care.

Professor Johannes Bitzer introduced the often difficult subject of sexual dysfunction in people with MS. Sexual dysfunctions are very rarely discussed and many people with MS have reported that they would like the topic to be raised. By identifying the causes of the problems and addressing these, possible strategies can be developed for attaining desirable and realistic goals. Although some of these problems cannot be treated using medication, many people with MS appreciate simply having the chance to express their feelings. It appears evident that improving the communication skills of healthcare professionals will help to improve the quality of life of people with MS.

Dr Stephen Madersbacher gave a presentation on bladder dysfunction. The common symptoms people with MS experience as well as tests that should be used to diagnose an overactive bladder were described. Attention was paid particularly to the frequency volume chart which is particularly useful in monitoring the person's symptoms and their response to treatment. However, a show of hands found that only a small percentage of nurses presently use this diagnostic tool. The numerous treatment options were also outlined. Throughout the talk it was emphasised that permanent catheterisation should be avoided for as long as possible.

Dr Carmen Lienert presented a comprehensive overview of fatigue and spasticity, which are two of the main restrictions of people with MS. The causes and treatment of both conditions were discussed. Treatment of these conditions is very important in improving the quality of life of many people with MS.

Dr Eva Havrdová described psychological counselling of people with MS in the Czech Republic. Psychological counselling is needed by people with MS who are newly diagnosed, those on disease modifying drugs and those with advancing disease. Each of these groups has different expectations and levels of understanding. Explanations of how to help people with MS overcome feelings such as disappointment and despair were discussed.

The final speaker was Dr Karl Baum, who presented trial data on the benefits of treatment with ß interferons. The recent results show their positive effects on cognitive deficits, quality of life and axonal degeneration. In addition, the new recommendations for when to start early treatment were outlined. Dr Baum finished by emphasising the role of nurses in improving compliance with treatment.

The conference highlighted the central role the MS nurse has in a multidisciplinary team and the importance of their relationship with people with MS. In addition to being considered as the primary educators, nurses also act as counsellors on a regular basis.

This year's conference also provided information on the nurse's role in diagnosing, treating and educating people with MS about more specific subjects, such as bladder and sexual dysfunctions.

Improved communication and education resources for both healthcare professionals and people with MS are of great importance in providing quality care.

At the end of each presentation delegates were given the opportunity to ask questions about the topics discussed.

Here is a selection.

Q:Healthcare professionals often don't have enough knowledge about their own sexuality. Could this be the obstacle in counselling patients with sexual difficulties?

Q:In many cases healthcare professionals do not have specific instructions or cures in order to help patients with sexual dysfunction, especially women, but often just an open discussion helps the person with MS discover the reasons for the feelings they have been experiencing. Do you agree?

Q:It is important to remember the role of the spouses. In Finland, we have courses for both the patients and their spouses and the focus has been on giving information. The results are extremely good. Do you have any such experience?

Q: Many people like to have saunas, which are very hot. Is it possibly harmful for patients? Could it cause permanent harm?

Q:What are the benefits of a baclofen pump if oral baclofen or temazine is not suitable?

Bu sayfadaki bilginin en son güncellendiği/doğrulandığı tarih:

11/09/2001

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