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Eular 2013 Conference

Eular autumn conference : report to the Board

Introduction :
The 16th Eular Autumn Conference took place in Reykjavik (Iceland) from November 14th till November 17th.
More than 120 people from every countries in Europe (Israël included) join this convention, invited free of charge by Eular : patients, rheumatologist, pharmaceuticals or paid staff of patients’s organizations.

What is to remember about the conference in general ?
• Most of those 120 people are affected by R.A. I met three people with lupus, one with scleroderma, and some with fibromyalgia… Are people with lupus difficult to make move ?
• Our information about lupus associations is up to date. Unfortunately, when I ask people of the RA organizations about lupus associations, they tell me that there are no organizations or they are not interested by international cooperation.
• Even if Iceland was the hosting country, it was obvious that Eular prepared it. For example, except in the opening session, where official people were invited, only two speakers were Icelandic. For next convention, it is important that the board decide who will speak and about what subject. The hosting country is only in charge of the practical, social aspects.
• Very few conferences lasted 30 minutes. The others were shorter. Most of the time, the speakers sat in sofa like in a talk show on TV. We have to do the convention most interactive and shorten our topics to attract people
• The average age was very low (but I’m already 50!). We see a lot of people below 40.
• Regarding “youth groups”, all groups have their own limits: for EPF, it’s 18-25; for others, it means children until 18, some other considers that one is “youth” until 40…
• Even if it’s a huge organization with some paid staff, and they did a lot to prepare, there are still errors and oversights. For example, we all received the ballot of previous year to vote for the posters… Errare humanum est, that is valid for our convention, too !
• They had the good idea to organize a “speed dating-icebreaker”, so the people know each other. We have to keep that in mind.
• Each day started with half an hour gymnastic…We should not just say that moving is important, we should practice it

Key elements of Maurizio Cutolo, president of Eular
• Genetics play an important role, in the disease, but also for the healthy ageing. On the other hand, correct diet, vitamin D, style of life and the physical activity can help. Moving every day can increase the “washing” of the negative effects of the drug and improve comorbidity (cardiac problems…)
• Every patient has the right to his own treatment (personalized medicine) as every patient is different. It’s important to treat the patient, not the disease.
• We now fight inside the cell. We now can stop the disease at the beginning what will help the patients in having a wonderful future if the drugs are correctly managed.
• Eular helps the patients to enter in every commission and lobbies about the new drugs with the authorities.
• Old patients are more isolated and have fewer opportunities to be aware of their illness (less use of Internet), so it is important to maintain paper information.

Key elements of Frane Grubisic : Healthy ageing with an RMC – clinician’s perpective

Pain is THE cardinal symptom : it is positioned by the patients as the first goal of all treatment modalities. It is weakly associated with underlying pathology and needs complex evaluation, long-term treatment and multidisciplinary diagnostic and therapeutic approach (biopsychosocial).

What is to remember about the workshops ?
Most of the time was dedicated to workshops : youth groups, healthy ageing, working with volunteers, self management courses. The summary below are based on the ppt presentations.

Workshop 3 : working with volunteers
1. Remember to ask (people start to be volunteer when they are asked, not after a general meeting).
2. Ask those you do not usually ask (there are people who would have agreed but were never asked)
3. Be specific when you ask (“to be present on a certain day for a stand” not only “ask questions of the members from time to time”).
4. Consider how you present tasks (an appropriate task for individuals)
5. Also ask the busy (do not think the people have no time, ask them !)
6. Go for the best for the job (write a list of the 5 “best for you” and ask them).
7. Ask at the right time (not when everybody is tired and want to leave the meeting, but when you are in a good spirit, for example…)
8. Let the right person ask (sometimes, it’s better if it is not a member of the board)
9. Say thank you (even when people have done a little effort)
10. People want to be part of a success (to say good things about the association is more attractive and creates a positive spiral).
11. Recruiting takes place all year long (not only before general meeting)
12. It is easier to find three than one (tasks may be solved by a small group rather by a single person)
13. Take the viewpoint of the person you ask.
14. Remember the question : what will it take for you to say “yes”, in order to avoid misconceptions
15. If you get definitely “no”, use his network.

Workshop 7 : selfmanagement
• What : a service to help people make positive changes to their lives and to maintain those changes
• Why : Self management provides people with opportunities to move from being a passive recipient of care to an active partner in their health care.
• Results : Research has shown that people with chronic conditions who choose to take control with good self-management skills have less pain, are more active, and are better able to enjoy family, friends and favorite activities. Self management can improve clinical health outcomes as well as reduce unnecessary health service use.
• How : the most valuable topics to be covered :
o Knowledge/understanding of the disease
o Pain managing
o Fatigue managing (being active, graded activation)
o Sleep hygiene
o Relaxation and pacing yourself
o Setting goals and thinking differently
o Pleasant activity and time for self
• One example : self-management for fibromyalgia patients in Iceland (available on request, ask BVL)

Workshop 4 : youth group : Mobilizing Online Platforms
• Advantages : anonymous, absence of geographical barriers, 24 hours availability, low costs, allows passive participation
• Empowering outcomes : better informed, feeling less alone in coping with their disease, improved self management and coping, increased optimism and control over the future, new social contacts
• 3 parts :
o Interaction : forum and chat
o Recognition : columns and cartoons
o Information : news, interviews with experts, webpages overview
• Managing online platforms
o Initiation stage : define goals, access, design and content
o Attract target group : critical mass of participants is needed
o Managing processes on the platform : welcome new members, provoke participation, if necessary intervene
o Keep the platform up to date.
• One example : Youth-R-Well.com

Workshop 8 : developing a youth strategy
• Young patients are a very difficult group to reach out for a patient organization (e.g. stigmatization, patronization).
• Key issues for young patients : communication with healthcare professionals, transition between pediatric and adult care, discrimination in education and access to labor market).
• Developing a youth strategy help the sustainability of the patient movement (creates the new leaders of the future)
• Cultural diversities towards “coming out” as a young patient
• One example : The youth group of the EPF : 15-25 year’s old, citizen of EU, chronic condition, nominated by a patient organization which is member of EPF, working knowledge of English, motivated, ability to work within a team
o Goal 1 : strengthening the involvement and representation of young patients in patient’s organizations.
o Goal 2 : promoting young patient’s rights and recognition of their needs and expectations within and beyond health policy area
o Goal 3 : Promoting a better cooperation between young patient and adult patient advocates
o Goal 4 : Strengthening young patient representative’s skills and self-confidence
• To involve young people meaningfully :
o Do not be afraid of change (to remain successful, an organization needs to change and adapt)
o Be more open to their work with youngsters, be more creative and welcome youth volunteers
o Youth-friendly approach, communicating in a language which can be understood by youngsters
o Not paternalistic or tokenistic. Do not pretend you know what young people want or think. Do not develop a youth strategy without young people. Guide them, coach them but do not influence them.
o Promote ownership of the organization among young people
o Define age-range and long term strategic goals.
o Give them concrete roles and responsibilities
o Ensure their work is valued by and valuable to the organization
o Young people expect things to happen much faster. Do not promise things if you cannot implement them.

Conclusions
I’m very happy to have been allowed to participate in that program, but I think that it is more and more interesting when you know who is who, so you lose less time in contacting people, etc... It is as for everything: you have to find the best way to manage. I will do more and faster next time !