By Michele Messmer Uccelli, BA, Department of Social and Health Research, Italian Multiple Sclerosis Society, Genoa, Italy.
Rationale
The Italian MS Society wanted to provide special topic seminars for people with MS and their family carers in a way that could combine a respite stay with education and information.
Objectives
• The objectives of the Theme Seminars are to offer education and information on topics that are important for people with MS and their families, and which impact on their daily life and their quality of life.
• A second objective is to encourage couples and families to take advantage of the location where the seminars are held as a respite from daily life.
• Finally, the MS Society wanted to be able to guarantee a relatively worry-free stay in a completely accessible facility.
Background
The Autonomy Project began in 2000. Focus groups of people with MS decided the topics that were most relevant to their lives and these topics became the Theme Seminars that are now offered throughout the year. The seminar facilitators are experts on various topics relating to MS and focus on providing information that is practical for the person with MS and his or her family carer, as well as on stimulating interaction and discussion among participants.
The site is named "I Girasoli" (The Sunflowers) and is located in Tuscany. The MS Society opened the facility for its first guests in July 2000. I Girasoli is completely accessible and includes many services and amenities including a swimming pool and health club where physiotherapy sessions and demonstrations are provided.
‘I Girasoli, Tuscany, Italy
‘I think everyone should bring their partner or spouse to the course because then they’ll learn just how disabling fatigue can be for a person with MS.’ Luca
‘I learned a few new strategies for managing my fatigue that I hadn’t thought of on my own.’ Monica
Marketing the Programme
A brochure is inserted in the MS Society’s magazine that describes the Theme Seminars and how a person can select the topic or topics in which he or she is interested and reserve a place. The objectives of each course and a full description can also be found on the MS Society’s website.
Programme structure
Depending on the topic, a seminar can last between two and five days. Expert speakers are matched to each topic. In some cases, especially for lengthier seminars, the facilitators can be two or three experts from different disciplines. Methods of instruction range from formal presentation, to role-play, to small group work. Each seminar also provides an opportunity for participants to share their personal experiences with one another.
Each seminar accepts a limited number of participants, varying between 10 and 20. Participants pay their travel expenses, and the rest of the expenses are covered by the MS Society, including room, board and the cost of the seminar itself.
Outcomes/results
The Italian MS Society held 35 seminars in 2001-2002. All were quite successful, with the favourites being Fatigue and Daily Living, Rehabilitation and Managing Stress.
Expenses
Expenses to be considered should include the following:
• Brochures, flyers or other types of advertising and postage
• Speaker expenses
• Participant travel, room, board (or any combination of these)
• Meeting room
• Coffee breaks
• Audio/visual equipment
Limitations
• A relatively limited number of MS societies have a holiday home or similar facility at their disposal.
• If you consider using a hotel for this type of activity it can be quite costly.
• Even using your own facility has its costs (such as room, board, coffee breaks, speakers’ expenses).
• Not all experts in the field can take the time to participate in a seminar of this type, especially when the topic requires more than one or two days.
• The seminars require a great deal of preparation on the part of the experts.
• Seminars that last for more than a day require a lot of participant interaction. This makes it necessary to limit the number of participants for any one seminar.
Suggestions
• If possible, include any advertising materials (such as brochure or flyer) with the society magazine to save on postage costs.
• If you decide to charge participants a fee and have never offered this type of programme before, begin with a relatively low fee in the first round of seminars and be flexible enough to reduce or waive it for anyone who cannot afford to pay.
• If the MS Society has no holiday facility and no resources for using a hotel, cut costs by organising the seminars at the local level (branches) so people won’t require a hotel stay.
• Whenever possible, utilise experts who work for the MS Society or who are affiliated with the Society. (Don’t invite experts who require a stipend!).
• Develop the daily schedule of the seminar with several short breaks to help fight fatigue.
• Make beverages available throughout the seminar.
• Ask participants to complete an evaluation form at the end of each seminar, giving their impressions of the seminar itself as well as of the facility and the organisation.
• Use the evaluations for determining the most appreciated topics, in order to decide to repeat those later the same year and which ones to repeat next year.
If your MS society or organisation is interested in reproducing this programme in your country, further information is available from Dr Roberta Litta, email: psicologo@aism.it
Theme Seminars:
• Fatigue and everyday life
• Living with MS
• Disease modifying therapies
• Communication problems
• Rehabilitation
• Occupational Therapy
• Architectural barriers
• Employment and legislation
• Employment: new opportunities
• Social assistance: legislation and rights
• Using the Internet
• Aids and adaptive appliances for independence
• Adapting your car
• Managing stress
• Role of good nutrition
• Complementary therapies
• Wellness
• Urinary problems
• Sexuality and intimacy
• Cognitive aspects |
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