13th CONVENTION OF ELEF
Sliema, Malta, 13th to 15th September 2001OPENING OF THE CONVENTION:
Chairman Brian Hanner opened the Convention at 9.40 am, welcoming everyone present including the representatives of Lupus Support Group Malta, expressing concern that so few countries were represented and at lack of reply by some. There will need to be full attendance in Switzerland 2002 to facilitate the 3-yearly elections.
THE WELCOME ADDRESS:
lan Lochhead, Chairman of Lupus Support Group Malta, said it was a pleasure an a privilege to be holding the Convention for the very first time in Malta. He then introduced his Committee:
Elizabeth Lochhead (Secretary) Yvonne Bonello (Treasurer)
Committee: Tony Bonello, Vivienne Buhagair, Myriam Rogerson
and followed this with a short history of the Group's activities to date.
MEMBERSHIP OF ELEF:
Brian confirmed voting arrangements for each country and proposed from the Chair the acceptance of the Lupus Support Group Malta into membership, seconded by Jean-Paul Sanders. Voting was unanimous and the Group was warmly welcomed into membership of the European Lupus Erythematosus Federation.
MEDICAL ADDRESS - THURSDAY 13 SEPTEMBER:
The Chairman welcomed and introduced Professor Joseph Pace who gave an interesting address on a wide range of medical and associated issues. The Professor also advised delegates that there is to be an important Dermatology Conference on Malta in early 2003 at the Hilton Hotel with around 2,000 attendees - be invited all present to attend the Conference.
BARCELONA PATIENTS' CONFERENCE:
Eight internationally renowned lupus specialists spoke at the Conference and 17 lupus group national/regional speakers also addressed the delegates who numbered over 200. Tapes of the medical talks might be available. A meeting of lupus group representatives took place after Conference and progressed thinking on a World Lupus Week commencing on 1st of October annually. At the same meeting, the LFA agreed to upkeep a World Lupus Group Register and to transfer it all eventually to the new LFA website.
NATIONAL REPORTS:
Jean-Paul Sanders chaired this session, circulating the written reports from those countries in attendance and inviting delegates to further comment. Questions and answers from this session are always valued by those participating, and this is an essential aspect of ELEF's role in facilitating exchange of experiences.
NETHERLANDS - a lot of funds are now going into research and their website funding is not as stable as previously.
IRELAND - looking for paid help in some form for their Dublin office where regular input from patients is not always possible due to ill-health. The Irish Marathon is proving a helpful source for funding.
MALTA - encouraging support from doctors, regular monthly meetings, good fundraising with coffee mornings, Hilton Dinner, barbecues and more. Pleased to thank LUPUS UK for permission to use leaflets and bookmarks which have been translated into Maltese and circulated through clinics, pharmacies, doctors. Looking for inspiration from other national groups and hoping to interest Malta's Government in their work.
PORTUGAL - running high-profile events e.g. dinners, bazaars, art exhibitions. Congratulated for linking up with Dr Ward at the Dublin Convention and running a parallel project to his Irish work.
SWITZERLAND - membership increasing, 15th Anniversary in 2002 and hosting the ELEF Convention. Plans outlined, venue a hotel in Thun, central Switzerland, two hours from Zurich airport by train.
UNITED KINGDOM - GP Guide to Diagnosis sent to 11,000 GP Practices across the UK and GP training days being held. All-Party Group for Lupus now up and running in Parliament and a debate on Lupus took place in the House of Commons in the spring of 2001 where Lord Denham, Minister of Health, responded for the Government. Yvonne Norton was pleased to present signed copies of the GP Guide to Diagnosis to all present.
MEDICAL ADDRESS - SATURDAY 15 SEPTEMBER
The Chairman welcomed and introduced Dr Bernard Coleiro, Consultant Rheumatologist at St Luke's Hospital, who spoke in detail about the lupus condition and who also provided interesting slide statistics on the incidence and prevalence of lupus in the Maltese Islands compared to statistics from other countries.
Jean-Paul Sanders then chaired a workshop with assistance and comment from Dr Coleiro on the following four topics put forward from delegates and guests:
LUPUS SENSITIVITY
Recognised that UV lighting is a problem for many as well as the effects of sunlight. Not always easy to convince eg employers that the fitting of filters is important. Re outdoors, a garden can be developed to give good shade, going out when the sun is less strong and considering special clothing all helpful. Copies of LUPUS UK 'News & Views' available at the Convention carried clothing article by a supplier.
PATIENT EMPOWERMENT
Both Professor Pace and Dr Coleiro declared support, also Professor Malia - the Malta Group are delighted. Delegates emphasised that education of GPs/associated medical colleagues remains a high priority, as patients will be more readily diagnosed and able to influence their medical care. Self-education for lupus patients is desirable.
LUPUS AND CHILDREN
Parents, relatives and friends need to know about lupus to support a child but should not be overprotective. Holland mentioned they organise special weekends away, where young patients get to know each other and of the problems of lupus. Communication and education are key issues. Portugal have free telephone support line for patients, and parents of young patients can use this.
LUPUS AND DEPRESSION
Perhaps arising in one of three ways - directly from lupus, drug-induced or from the inevitable change in lifestyle that comes to lupus patients. Can doctors find a way to distinguish the main cause in a lupus patient ? Will pain management techniques help with better control of depression? Dr Coleiro advised that it is difficult to identify the cause of depression - if patients are referred to a psychologist, the latter should have access to the patient's lupus history. What can patients do for themselves? Patient should be encouraged to seek help, to communicate.
Last update 06-04-02
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Maria Teresa Tuccio