SBF Stockholm:+46 8-311490, SBF National:+46 8-60012 99
Livdjursgatan 5a, 121 62 Johanneshov

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Notice to attend SBF's annual meeting November 30 2004

In support of dr. Gustavsson 04 03 01
Joycelyn Woods
M.A.,C.M.A.
President
National Alliance of Methadone Advocate

The Swedish Users Union - an opportunity to a dialogue

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The Swedish Users Union (SBF) was founded in October 2002 by patients in substitution treatment. During the short period of time that the Union has existed more than four hundred people have joined in and become members. Our main task is to look after and make visible the needs of the Heroin addicted. It is, of course, difficult to place a group of individuals in such a relatively narrow categorization as ”heroin addicted”, but there is a common interests here.
Today for instance, a number of different pharmacological treatments are offered, that essentially can improve opiate addicted peoples prospects of a worthwhile life. Methadone and Buprenorphine (Subutex) are in addition drugs that, used as they should, increase the possibilities of surviving in a dramatic way, but they also have habit-forming characteristics. Many of us have experienced maintenance treatment as our last chance in this life. We have, after years of hesitation, laid important decisions regarding ourselves, our future lives or deaths in the hands of someone else. Through the years this experience of being powerless has been an all-pervading theme when we have tried to exert an influence on our treatment. We are of the opinion that from the substitution programs point of view You have to be aware of the great responsibility that is implied in giving habit-forming medicine to vulnerable people, but we have, time after time, experienced that people have been discharged from the programs treated to lightly, and that people have become victims of arbitrary discrimination and have suffered from repressive measures against them. Most often it seems to strike people with particular difficulties. The very basic idea of SBF is that those who without any major problems have adjusted to the demands of the program should be loyal to those of us who have difficulties. The quality of the programs is determined on how we are able to support and to aid those of us who have difficulties. It is our ambition to, in a constructive way, contribute so that the substitution programs will be shaped in a way out of any kind of powerlessness and to a help towards an existence where we can take responsibility for our own lives.

The Union also wants to make visible the situation in society of the heroin addicted. We have seen that so far, the people and interests that has been expressed in questions affecting us is lacking our experience of the circumstances they are talking about, and we know that our Union will become an important voice in the future Swedish drug debate. We want to be a user party in a constructive dialogue with other interested parties on the drug issues. Heroin is a relatively new drug in Sweden and the public fear and insecurity is contributing to our alienation. The use of the drug is also increasing among our youth. A lot in the Swedish drug policy has been more determined by political and ideological considerations than by a humanitarian and public health perspective. We have already seen a great demand for our experiences in spite of the short period of time that we have been organized. We have been contacted by the media as well as by students, representatives of the health care sector, by relatives, schools and many others. Our experience so far is that our voice not only has been missing in various contexts, but also been longed-for. We have been met with enthusiasm and gratitude wherever we have presented ourselves in public and in contact with individual people. Countless are the parents that we have heard from and they have expressed that there now, at last is an organization that understand what they are talking about, and countless are the active users of illicit substances that has found confidence and hope by joining up to the Union.
We don´t believe in too much lecturing and scaremongering propaganda and when we have met with school children it has been our distinct impression that they are relieved to be able to discuss these issues with people that have own experience of the drugs they are talking about. Many of us have children of our own and we have been worried to learn from these contacts that younger people today have a lot of experience of drugs, even of Heroin. We think that we have a very important mission here to do a drug preventive work with the school children and we have ideas on how pedagogical models in this kind of work could elaborate.

We are now consolidating our organization and the Union is seeking its shape, but already, a few important tasks is crystallizing. Many people require information on drug substitution, how You apply for this treatment and about the preparation characteristic and functional mode. A work has already started to obtain this information but this requires personell reinforcement. When people come to us with questions, these talks sometimes develop to some kind of supportive talks. You don´t have to be a participant of the substitution programs to be a member and many of those who get discharged against their will from the Methadone- and Substitution programs come to us regularly trying to avoid lose their foothold in existence and to get help to be able to return to the programs. People share with us many tragical stories and we have to improve ourselves in the reception of people. To be able to house what we have to listen to we need guidance. IT seems that specially divided co-workers should take care of these tasks Many people are displeased with the way they are handled within the health care and social services and need assistance with appeals and similar matters. We are of the opinion that it is very important that the bad conditions get examined independent. Many of our companions has difficulties to assert themselves in their contacts with authorities, social services, legal institutions, care takers and so forth and they need assistance and knowledge, and in these cases, we have been able to help. We have often been requested to participate when important matters have been dealt with.

Many relatives of opiate addicted has joined the union and there is advanced plans to organize a parent section of the union.

We are aiming to create information material on how to avoid contagion, and this will be distributed printed and on the Internet, on our Web-site. We will co-operate with open wards, treatment of offenders, representatives, client organizations and others that get in contact with drug addicts.

SBF has succeeded to contribute in the appointing of user councils both at Beroendecentrum and at Maria. The aim is to optimize the substitution treatments. The Union will, of course take part in these councils work. Talks have started with the orderering office ”Vård” and we will here represent the patient perspective.

Our ambition is to make our Website a mouthpiece to the user aspect of opiate addiction and substitution treatments.

We have been engaged as lecturers and informants in various contexts. We have heard from schools and other client organizations, and also abroad it has been noticed that a new voice has started to speak out in the Swedish drug debate.

The work load is heavy. It happens too often that we work some twelve hours a day or more. And our chancellery need reinforcement. The need for suitable premises is urgent. We have at our disposal a rent free room in RFHL´s premises at Norrtullsgatan in Stockholm where all our activities, not free from friction is trying to get on in a very limited space. RFHL has in this way tried to help us getting started but in the long run they cannot afford to let a room be unlet. In a very near future we must leave the room and we have the feeling of being a free-loader. In only one room we try to, as well as we can, pen written communication, get updated in drug issues, make our phone calls, have our meetings, meet our visitors from authorities, people seeking help, relatives and others. An ideal office would be at least four rooms; one for office work that needs focusing, one for talks, groups and meetings, one reception and another one for common purposes for all the people that come to us for specific reasons or just for a cup of coffee. It is our dram to find some older industrial premises where we could create the rooms to meet our specific needs.

Almost all the work at the chancellery is done by users. Our Website is manoeuvred by a man with twenty years of working experience in the computer technology line of business, another person, familiar with computer work, work as a secretary and assistant clerk, an educated journalist works on text material and a professional photographer is organizing the work. We have members that like to work with the specific drug problems among immigrants. One member has a great interest in source research and has started a work to catalogue what has been discussed through the years in professional and scientific journals, daily press and media regarding medical governed treatments for addicts (as substitution treatments). The result of this work will be an archive and a bibliography that can be offered to research-workers, journalists and others who take interest on these issues. An unpaid consultant has given us invaluable guidance by sharing his experiences with us from his work in client movements and he has also helped us with instruction and practical things. He has used many hours of his spare time for all this work. In the long run all these tasks cannot be based on voluntary efforts.

In the future we have planned to, in addition of a base financing, also be able to add different time-limited projects. Users and others with ideas that is consistent with our interests should be able to implement these as independent projects within the framework of the union. It is quite possible to bring about managing a Web hotel, and its services could also be offered to others. This would bring income. Basic education in work computer work, education for a so called data drivers license (a Swedish basic education) for our members can be arranged. The chancellery has to get equipped with computers to our members disposal. We also have qualified members able to lead education in photograph. We imagine that a lot of the work carried out at our chancellery or in the Unions premises could be arranged as so called lönebidragsanställningar (a Swedish model to get unemployed back to work). We also plan to offer different forms of work training programs. The Union could in this way contribute as a rehabilitating station on the way back to the working life. Among our members there is people with great specialist knowledge within different areas who need to update their skills. Many need to re-establish their connection to the working life and others may lack any experience of work at all.

Today, it is most important to create our basic activities where the supporting and councelling efforts are given priority. Furthermore, the democracy within the Union needs strengthening. We need to work out forms for this. Our solidarity thinking needs to get firmly established, and the members has to be given the opportunity to participate and feel the community.

It is our hope that our future contributors can see the future possibilities in our Union. Our collective possesses unique knowledge on Heroin addiction and are willing to share this. Our heart is above all with the most exposed of our members. This is people that have difficult to handle the ambitious open ward programs and therefore run the risk of falling between the thinly placed chairs that the addict care with reduced budget today offer us drug addicts. Maybe we all, at last, will get the opportunity to express ourselves and our experiences through SBF, and hopefully, by that, a productive dialogue with Health care, authorities, offices, organizations and the rest of the society, can start.

Frienship & Solidarity
The Representative´s of The Swedish Users Union’s first board

Björn Hjerdin

Berne Stålenkrantz