AGM 2009
MINUTES OF EUROPEAN POIO UNION
ANNUAL GENERAL MEETING LILLE – 19/9/2009
1. DELEGATES
Johan Bijttebier (Chairman)
Hugh Hamilton (Vice Chairman)
Philip Rendtorff
Els Symons (Secretary)
Margret Embry (Treasurer)
Michael Egan
Ulrike Jarolimeck
Lola Corrales
Carlos Perez
Juli Selles
Roberto Bassi
Adriano Piffer
Vanda Meastroni
Paul Bosco
Tine Tournicourt
Kathleen Tribou
Aadje de Groot
Brigitte Bonnin
Bernadette ?
Christian Valeix (Interpreter)
2. INTRODUCTION & WELCOME BY CHAIRMAN (Johan Bijttebier (JB) – see separate paper MS Word).
• Minutes of the AGM 2008.
• Appreciation of the work by Brigitte Bonnin was expressed in the organisation of the AGM, the dinner reception and meeting room.
• Mr. Michael Egan, representing the British Polio Fellowship and Mr Jules Seles Linares representing an organization from Catalunya / Spain were welcomed
• Ulrike Jarolimeck - Germany had brought a lot of information about polio, for the information of those attending and this could be collected from the desk at the entrance to the Conference Room.
3. REPORT FROM THE BOARD
Philip Rendtorff (PR) explained the formalities and registration which had to be dealt with in order to achieve official and legal status and stressed the necessity of getting as many countries and organizations together as possible. He also explained that translating everything into the different European languages is much too costly and problematic. As errors might occur specifically in legal and medical texts, these translations ought to be done by official translators, but this would be too costly for the EPU. The official language of the EPU will be English, as this is understood by most.
4. WEB SITE
Els Symons (ES) and John McFarlane were thanked for getting the website ready.
5. QUESTIONNAIRE UPDATE
The Chairman thanked Daniel Peltzer, Brigitte Bonnin and Michel Dives for their hard work. Brigitte will work together with an e-learning specialist of Prof. Nollet in order to get the questionnaire user friendly and more suitable for publication on the internet. Prof. Frans Nollet believes its 3 main purposes for the questionnaire are:
1. To make people with polio aware that they might have PPS
2. Political issues (collect data on problems0
3. Research purposes
Juli Selles expressed regret that there were no questions about erection and incontinency problems.
6. CONFERENCE 2011
The possibility of organising a big conference in 2011 had been discussed by the Board and it raised many questions regarding organisation and resources required. This time span is needed because of organisational considerations as well as circulating interested parties i.e. doctors, physiotherapists, manufacturers of aids (orthoses, crutches), etc. Lola Corrales expressed the view that the medical professionals invited should include representatives from the United States as well as European countries. Hugh Hamilton (HH) stressed that the Eastern European countries should attend. Prof. Nollet thinks the conference is a very good idea, also for lobbying.
It was envisaged the conference would last for 3 days, 1 day for the medical professionals and 2 days for patients; lectures, workshops etc. with a total attendance of 500 delegated comprising medical personnel and polio SURVIVORS
PR is willing for is willing for the conference to be held in Copenhagen, and for his organisation to play the lead role in its organisation and administration. His proposal was accepted with thanks. A Conference committee should work out the plans etc.
7. PROPOSALS CONCERNING MEMBERSHIP of EPU
1. EXECUTIVE BOARD PROPOSAL
1. Full members which are organizations concerned with polio that have more than 50 polio survivors who pay a joining fee and annual membership fee; they are allowed to vote.
2. Associate members concerned with polio who have less than 50 polio survivors,
institutions or persons with a professional interest in polio, people with polio in countries where there is no organization representing their interests. This must first be approved by the Executive Board. They must pay a limited annual membership fee but are not allowed to vote.
SPAIN commented:
a. First of all, National polio and PPS organizations. In federal countries these could be federal groups; in state countries these would be national organizations.
b. If any other associations related to a disability different from polio, want
to belong to the EPU, those would not be entitled to vote. (“They will have
a say, but not a vote").
Voting:
The proposal of the Executive Board is accepted by 9 members,
Spain and Germany are in favour of the Spanish proposal.
8. PROPOSALS REGARDING NEW EPU VOTING SYSTEM
ES explained the proposals about a new voting system. Brigitte Bonnin (France) asked if an organisation with polio members, but doing nothing in that respect, can become members. The answer is yes if 50 persons in the organisation are polio survivors. The proposal was put to the vote and passed as follows:-
There were proxies from Scandinavia / 1 from Finland and 1 from Sweden, so 11 votes in total, according to the current Rules (1 country, 1 vote): Ireland, UK, Denmark, Finland (proxy), Sweden (proxy), Netherlands, France, Germany, Spain, Italy, and Belgium.
1 - EXECUTIVE BOARD PROPOSAL
Tiered voting structure, whereby full member organizations with the following size of membership, will have the following number of votes:
50-500 polio members: 1 vote
501-2000 polio members: 2 votes
2001+ polio members: 3 votes
SPAIN commented:
Every member country has 3 votes, if there are more organizations in that country they have to divide the 3 votes among them. If in the future a member country has more than 3 organizations, the number of votes will increase accordingly.
UNITED KINGDOM commented
Mike Egan states that the proposal of the board is a disadvantage for the UK, as they have 6000 members.
Voting:
The proposal of the executive board has been accepted by 8 votes,
Spain voted in favour of the Spanish proposal, France and Germany abstained from voting.
9. PROPOSALS REGARDING COMPOSITION OF EPU BOARD
SPAIN commented
75% of the members must be polio survivors
FRANCE commented:
Half of the members of the board should be polio survivors and the chairman, who must be polio, has the decisive vote.
PR explained that as polio survivors are getting older, with all the related disadvantages, it would be unwise to refuse a very useful person just because they are not a polio Survivor.
Voting:
10 votes in favour of the French proposal,
1 vote (Spain) for the Spanish proposal.
A lively discussion about the rights of national and regional organisations followed. Germany and France are to forward their suggestions 6 weeks before next year’s AGM so that they may be discussed in order to be discussed.
10. ELECTION OF OFFICERS
• For the moment there are 5 members on the board.
• A member of the executive board is elected for 3 years and can be re-elected once, so the total duration of being in office amounts to 6 years.
• Prof. Frans Nollet has accepted to be our medical adviser
• Margret Embry (ME) would like to work for a limited period and not being tied down for 3 years. Margret is the only candidate for the Treasurer’s post and has been elected unanimously.
• It was felt that it would be good to have 1 or 2 new members on the board, people can put in their candidature
• Italy (Bassi) is interested to become a member.
Note: The next Board meeting is to be held in Copenhagen on 25/25 November
11. TREASURERS REPORT
• Money transfer from the UK €9000
• Translations and Registration €2500
• AGM Lille Conference €1400
• Bus Lille €290
• Printing of the leaflet €800
• Website €1854
Bernadette requested that the Treasurer’s report and business plan be circulated prior to the next AGM meeting. As soon as further actions and the place where the AGM will be held next year have been decided, ME will send all members a business plan. New suggestions must be made before the end of the year.
12. LEAFLET
There were suggestions about leaving out names as they might change over time.
The mention that PPS can be fatal ought to be removed; all members agree about leaving the fatality out.
13. ADDRESS BY Prof Nollet & Others:
Prof. Nollett made a presentation to the AGM on the following matters:-
1. Shoulder and arm problems
2. The little inventory he did under the EPU members about PPS in European perspective (which he called in for the meeting in Stockholm)
3. The EPU questionnaire – he suggested a more concise, shorter version, with the help of e-learning by somebody in his department. He offered to do this for us.
Mrs Rehn, University of Dresden gave the results of a study regarding 3000 old Polio Files and explains the methodologies of how she came to certain conclusions. She found factors which might influence developing PPS are: weight gain, certain medication, lack of treatment, hard physical work. Her research has not been published yet, the Bunderverband does give backup and she will continue this study.
14. A 5-MINUTE ADDRESS BY EACH ORGANISATION on what they expect from the EPU, or on their own achievements
Hugh Hamilton - Ireland.
An effort has to be made in order to get Eastern European countries to become members and attend the conference in 2011. In Ireland (with 23 regional groups) the groups come together on a regular basis, just for coffee and a chat or for playing chess, darts, indoor bowling, etc. These events are highly appreciated and it would be interesting for other countries to come and see how this is organised.
Michael Egan - the UK.
Regarding the conference in 2011, he knows several medical experts whom he could contact. He thinks it is very important that a way for better diagnosing PPS should be found. A special problem for our members is the fitting problem of aides. Could we on a European level find out how to improve?
Ulrike Jarolimeck - Germany.
More attention is needed on the psychological impact of PPS. As polio has increased again in different countries, parts of Africa, Asian sub continent, etc. information about vaccination is very important.
There are 5 officially recognized treatment centres in Germany, the one in Koblenz is very special, they take on the whole remit of treatment even operations. Knows several doctors she could contact for the conference, the one from Koblenz (Dr. Alex Ruetz – Polio-Schwerpunktambulanz Koblenz ) is interested in participating.
Lola Corrales - Spain.
Wants American doctors to attend the conference
Tried to influence the political people regarding PPS. Was not very successful yet.
EPU should make more effort in European Parliament
Juli Selles Lunares - Spain
Regrets that after the last visit to the European Parliament nothing has been done in that regard. He sent a letter to Luxembourg and JB requested that we could see that letter. Juli wants the EPU to write a letter to the EU. He wants more attention for erection and incontinence problems.
Roberto Bassi - Italy
It is essential that the board proceeds to make a detailed operational project, this is necessary to start meetings with members of the European Parliament. This project approved by the next AGM should be submitted to the European Commission in order to get operational recommendation for the member states.
Parallel to this, it will be necessary to start a press campaign in the European mass media, it is essential to be known and to tell what we want.
Please note that the time is short, we cannot wait 20 or 30 years for a solution.
We want to enter the board as representatives of the southern part of Europe. We think it is not a problem to widen the Board from 5 to 7 members; it would be an enrichment of the whole organization. For the linguistic problems we can find solutions and the contact among the members of the Board can be by internet and Skype and video conferencing.
At the end of this year they will have the results of the study on Immoglobuline, the results can then be compared with the ones they got in Sweden.
Italy offered to host the AGM in 2010 – accepted
Tine Tournicourt - Belgium
Wellness treatment for everybody at affordable prices.
Aadje de Groot - the Netherlands
Thanked the Board for their hard work and achievements. Thinks Eastern countries ought to be reached. It would be good if the EPU could prove the needs of people with polio for wellness treatment, so that insurance will cover this.
Bernadette - France
The GLIP wants the knowledge of PPS further developed and bring it to the attention of everybody : newspapers, weeklies, radio, internet, etc.
Participation in medical, sociological studies on PPS and the late effects.
Pragmatic actions to prevent PPS problems; warning about the danger of overusing muscles, certain medication and this for polio people and the medical world.
These actions should take place in every country
The EPU has to continue the actions at the European Commission and other decision taking organisations, as well for better treatment as for accessibility in public buildings and places.
15. ANY OTHER BUSINESS
The Chairman explained, that Belgium (Michelle Dives) proposed that all member organisations contact at least 10 different Rotary clubs, during the week of the 23rd of October, as this is the International Polio Week
16. CLOSING STATEMENT
The Chairman closed the meeting by stating :
• The spirit in the group is very good
• We will definitely restart to contact the European parliament
• We will work very hard
• We will form sub committees for the different goals
