The InSieMe Project: Developing the role of the MS Nurse in Italy R. Motta, RN Social and Health Services and Research, Italian MS Society, ITALY

InSieMe: Infermieri per la Sclerosi Multipla Together: Nurses for Multiple Sclerosis

Background Approximately 52,000 affected with MS Socialized health system Inadequate distribution of human resources in hospitals and out-patient services (ie. patient:neurologist ratio - northern Italy 57:1 vs 34:1 in southern) No special training/education in MS for allied healthcare professionals

AIM: Create, develop, formalize role of MS nurse in Italy GOALS: -Develop nurses specialized in MS -Standardize healthcare practices in MS nursing -Mechanism for exchange and professional growth -Peer support network

Phases of InSieMe: - develop curriculum - choose 1st 10 centres/nurses - intensive, comprehensive training on MS - regional courses - national conference - develop a permanente organization or group

Phase 1 Develop curriculum Topics chosen based on: -IOMSN Core Curriculum -Canadian MS Care Plan -Focus groups of professionals and persons with MS

MODULES PROGRAM. Day 1 Overview of multiple sclerosis Understanding the basics of neurological examination and EDSS Identifying and coordinating an interdisciplinary team Day 2Disease modifying agents Evaluating materials provided by the pharmaceutical industry: Are they always useful? Complementary and alternative therapies Nutrition Fatigue

Day 3Urinary dysfunction Using the voiding diary for initial assessment of urinary dysfunction The role of self-catheterization for patients with MS Bowel dysfunction Sexuality Learning to be comfortable talking about sexuality with patients

Day 4Cognitive dysfunction Psychosocial aspects Spasticity Tremor Pain Day 5Employment issues, legislation and patient and caregiver rights Aids for activities of daily living Resources for the MS nurse Resources for people with MS and their families Documentation

Phase 2 Choose core group of 10 nurses Questionnaire to 200 neurology department ● MS clinic exists? ● Dedicated nurse? ● Hours Criteria: - dedicated nurse following MS pts. - MS clinic open > 3 days/week - geographical distribution

Course teaching methods Lecture Question and answer “Quiz the audience” Small group tasks Role-playing Case studies and case presentations Practice visits with patients Demonstrations Discussion

Phase 3 Training - 5 day course on MS (with 10 nurses) - 2 day/session for revising curriculum - 3 day course for learning speaker skills

Phase 4 Regional course - 10 courses offered in 10 sites - neurologist were invited to identify nurse to attend - 1 nurse for each neurology department in Italy - project covered all costs except for participants’ travel

Centres involved in InSieMe

Key to success - 1 CHOOSE THE RIGHT PEOPLE! - motivated - dedicated - energetic - organized - open to new experiences - open to challenges

Key to success vary teaching methods - involve partecipants throughout course

Phase 5 National Conference ● 1st conference dedicated to nurses working in MS ● Speakers are nurses! ● Program does not exclude nurses who did not attend regional course ● Opportunity for starting a support network

1st Annual MS Nurse Conference October, 2003 Bologna, Italy ● 240 registrants so far ● Launch of new society for Italian MS Nurses - registration fee includes 1 year membership in new society

Conference program MS nurse: Defining a new role Results of the InSieMe project The impact of InSieMe on MS patients Improving quality in MS centres The Cagliari MS Centre as a model The role of the MS nurse in teaching autonomy The meaning of autonomy in chronic illness Legislation regarding patient rights Self-management of fatigue Sexuality: let’s start talking about it Confronting bladder problems The future of MS nurses in Italy The IOMSN experience Creating and applying guidelines in MS nursing A new dialogue between nurse and neurologist Looking toward the future: SISM

Phase 6 SISM- Italian MS Nurse Society ● Founded by a group of MS nurses and Italian MS Society ● Goals for 1st year: - continuing education - guideline development - 2nd annual conference ● Official affiliate of IOMSN

In countries where no MS Nurse exists people (nurses, pwMS, other health care professionals) have to convinced of importance of MS Nurse : - give materials that support and promote project to put in hospitals and MSS branches - write a final exam that is reasonably challenging (with possibility for failing) - give certificates: ▪ for completing course ▪ for passing exam - offer CE credits, if possible

Challenges ● cultural barriers ● cost ● time/personnel

Challenges cultural barriers - nurses themselves inflexible to change, unwilling to take on active role and more responsabilities - patients, families accustomed to “communicating” only with neurologist - physician unwilling to acknowledge a non-physician can be responsible for management and decision-making

Challenges cost (hotel and catering for regional courses and printed materials very expensive) - smaller-scale (start small) - use MS Society/hospital structures rather than hotels - promote project in materials already produced by MS Society (i.e. magazine, newsletter, etc.)

Challenges time/personnel (we used 2 full-time people for 3 years) - use a person with/in MS Society who is able to organize the project and is knowledgable about MS - involve MS experts and others who will collaborate for free

Conclusions ▪ where the MS nurse does not exist – MS Societies must act ▪ creating MS Nurse experts is a long-term commitment ▪ MS Nurse has the possibility to improve the quality of life for people with MS