1996 the Swedish SLE-group celebrates it's 10th year of existance. The theme for this jubilee is "Learn to live with SLE". During the past years we have tried to learn as much as possible about lupus. Now we want to get further and focus on how to improve quality of life, living with lupus.
In June the eastern region with Stockholm had a day of celebration with a festive get together day. The highlight of the event was a dramatized speech on patient - doctor relations performed by an experienced and wise actress/teacher/singer. We had nearly two hours of high class entertainment and learning. I say, Dr. Howard Shapiro would have appreciated it!
Her main message was that as a patient, it is essential
- to make yourself very clear verbally,
- to be fully concious of your body and balance (no hanging head and
unintentional gestures),
- to concentrate on your doctor and what you want him/her to help you with.
Concentrated in one sentence: "Put the light on!"
On this day six members of our group also entered the stage one by one and told the audience about their personal experience of the work in the SLE-group.
A physiotherapist presented the latest about do's and don'ts like fitness, mobility, balance and different kinds of pain treatment.
On September 14 our national executive committee invites the regions to a jubilee day whre they will learn about how to find -and use- our inner resources. One of our members, a chinese
doctor, resident in Sweden presents the mental and physical training methods Tai-Chi and Qi-Gong. (Recently an article about her and these methods in our paper.)
As political goals and welfare systems changes, another headline for this day is "From patient to consumer of the health care".
In connection to our jubilee the SLE-group has donated 8.000 ECU to young people with rheumatic diseases. The money comes from our educational and training fund.
This year focus is also on young lupus sufferers and their particular needs and wishes. Being young and facing problems like pain and fatigue, but still feel the demands of daily life, illness and taking medicines that sometimes cause increase in weight together with changes in appearance is not easy. Helping the young to take up these issues on meetings, in articles and giving them opportunity to contact each other is important to them.
An educational and training project on a larger scale for people with rheumatic diseases is continuing this year. For personal development and increased competence are courses on university level in nine towns in Sweden. Among the subjects are history, psychology, identity with emphasis on women. Other subjects are sociology and civics, information and PR, computer handling and IT. Health and medical care, labour market, languages and speech/presentation techniques can also be studied. Myself, I attended a course in literature and history last winter. To study in a group with skilled teachers was interesting and inspiring.
The third one-day course about lupus for medical staff and medical shool teachers took place in December 1995. It contained the same intensive program of a clinical spectrum of different symptoms and manifestations of lupus variations. Another part dealt with diagnostics, criterias and laboratory tests. The section about treatment also involved different therapies, pharmacological and others. These courses have taken place in hospitals with specialized treatment, qualified for rheumatic care. The participants in the courses therefore had the opportunity to study medical care and programs for lupus patients on the spot.
These last courses were the result of a project that started in 1991. The goal was to improve knowledge of lupus among health and medical staff.
Members of our group also visit health and medical care schools in order to give a presentation of lupus and themselves.
Discussion groups for members under supervision of an experienced nurse and hospital social worker have continued in the spring 1996. They are appreciated and allow enough time for each participant.
During the time March 11 and June 15 a national information campaign about rheumatic diseases was run by the Association. Our group was very active in taking part in this. Thus we could read, see and hear articles, advertisements and programs about lupus in media like newspapers, magazines, television and radio. In the Stockholm underground for instance, there were large advertisement posters presenting one of our members and lupus. Many hospital clinics had "open house". An information bus has driven round to many small towns in the country.
Two new leaflets for members who do voluntary work for the SLE-group are being completed and distributed early this Autumn. One is for the guidance of people who do committee work. The other leaflet contains advice and assistance for contact persons.
National, regional and local meetings have dealt with subjects like
- lupus diagnosis
- the latest in medical research
- medicines, effects and side-effects
- pain and how to treat different kind of pains
(1996 is proclaimed "year of pain" in Sweden)
- function and work of the hospital social worker
- hormones, sun-bathing and alternative health centres
- joint-meeting with patients suffering from pelvospondylities and lupus; clinical spectra on
both these diseases
- meeting with politically elected members of a county council
- our skelleftea-group has this summer made their third recreation journey to the island
Gotland in the Baltic in order to visit the group
there.
Our SLE-Bulletine has this year published articles about
- Lupus and inheritance
- Costeroids like Prednisolon -"A fox poison or a divine life saving drug?", written by two
experienced rheumatologists
- How the hospital social worker can help
- Series of presentations of other rheumatic diseases
- Portrays of members
- Reports of events (like ELEF-meetings)
The group has also had representatives in different seminars and fairs in the health care and medical sector in Sweden.
Posters and leaflets are put up and placed out by our members in different hospitals and other institutions.
In Sweden, county governments are responsible for health care amongst other things. Health and medical care is financed by taxes and politicians make decisions on the organisation of health care. In Sweden, we have a very strong tradition of popular national movements, movements that enable us to organise ourselves into interest groups.
The Swedish handicap movement, which consists of more than 30 organisations, is very strong today, and we sense that decision makers on all levels of our society are sensitive to our demands. The economic recession of the past few years has limited, however, the possibility to realize our demands. Much energy today is spent trying to maintain what we have achieved in past years.
Besides subsidies our activities are mainly financed by member fees to the SLE-group together with a percentage per member from the Rheumatic Association. (A double membership fee is required to belong to our group). We also apply for money out of a variety of funds on different levels and for different purposes, nationally, regionally and locally. A minor income is selling seminar reports, cards brooches and pins. Our library with literature about lupus anyone can use free of charge.
In September 1996 the Swedish lupus group has about 1200 members, but nearly 1600 issues of the SLE-Bulletine are circulated. During the last year the membership increase has been 10 - 20 per month, at the same time we loose 2 - 3 members per months.
Monica Fishman
E. L. E. F.
European Lupus Erythematosus Federation