Brukarperspektivet

Brukarperspektivet är något som det talas om väldigt ofta på sistone. Jag har sett att Sveriges Kommuner och Landsting, den stora organisationen med en massa byråkrater som försöker implementera Socialstyrelsens nationella riktlinjer för missbruks- och beroendevård.

Ni vet, det där dokumentet som slår fast att det heter missbruksvård och inte missbrukarvård, som slår fast att behandling utifrån Anonyma Narkomaners program inte har någon evidens (man kan tycka vad man vill om tolvsteg, men det finns ju iaf några stycken som blivit drogfria med hjälp av det), och som menar att det krävs olika behandlingar för cannabis- respektive amfetaminberoende.

De storsatsar även på att få till ett brukarperspektiv. Ett sådant finns vid Beroendecentrum i Örebro, landstingets spjutspetscenter för missbruk, framtidens missbruk(ar)vård om Gerhard Larsson och missbruksutredningen får som han vill.

Det näst senaste protokollet från brukarrådet visade att deltagarna var 3 representanter för Länkarna (en svensk variant av tolvsteg utan stegen kring gud och andlighet, på utdöende men stor bland framför allt finländare enligt mina fördomar), 2 representanter från Verdandi (arbetarrörelsens nykterhetsorganisation), 2 representanter från FMN (föräldraföreningen mot narkotika), 2 representanter från KRIS, 1 representant från SIMON (organisation för invandrare), 1 representant från RiA (kyrkornas sociala hjälporganisation) och 6 representanter från landstinget.

I presentationen av brukarrådet skriver Beroendecentrums tjänstemän:

Självklart är det så att det centrala i Beroendecentrums uppdrag är det direkta mötet med patienter och deras anhöriga/närstående.

Tänk, jag trodde att landstingets Beroendecentrums centrala uppdrag var att behandla patienternas missbruk och beroende. Jag har iofs tidigare debatterat, snarare kritiserat, i CANs tidskrift A&N samma organisation eftersom de gått ut med att de inte tror på drogfrihet. Det verkar som att det är synd om de brukare som genom Beroendecentrum hoppas få hjälp mot sitt missbruk, det kanske hade varit bättre om man haft ett patientperspektiv? Jag vet svaret eftersom jag (tyvärr) länge varit ”brukare” vid Beroendecentrum.

Det finns en längre programförklaring också, den lyder:

Brukarrådet i Beroendecentrum utgör genom sitt arbetssätt och sin funktion en medborgarnas förlängda arm in i verksamheten. Brukarrådet är ett viktigt kvalitetssäkringsinstrument för att bevaka och mäta hur pass väl verksamheten uppfyller och har framgång i de uppsatta målen avseende bemötande, tillgänglighet och garanterandet av en god och säker vård.

Fantastiskt att brukarrådet ska vara medborgarnas förlängda arm. Jag som trodde att det sköttes av politiker och att ett brukarråd skulle vara vara patienternas, sorry, brukarnas förlängda arm. JAg har läst årets tre protokoll från Beroendecentrums möten. Det första samt andra bestod enbart av punkter där Landstingets Beroendecentrum informerade om olika frågor. Det senaste, en dryg månad sedan, bestod också av information från landstingets sida (bland annat att chefen för Beroendecentrum tyckte att Anonyma alkoholister hade ett intressant upplägg och att det var framgångsrikt och att man borde närma sig varandra, chefen för Beroendecentrum var tidigt ute med den upptäckten måste man ju säga). Sedan avslutades mötet med följande informationsrunda:

Simon: Nattvandring på Valborg – samling Rådhuset. Var bättre tidigare år när det var samling vid A-huset.
KRIS: Man har mycket på gång inom KRIS, bl.a. skall man ha ett sommarläger i Kroatien. Man har också två halvvägshus där Lars förestår det ena. Samarbete med FMN om anhörigvecka /medberoende. Håller på att utveckla sina behandlingsinslag, mer och mer 12-stegsinslag.
Verdandi: Man kommer att hålla en kongress i Kumla 28-29 maj, cirka ett 100-tal deltagare nationellt.
RIA/Hela människan: Man kommer räkna hemlösa under maj månad. Kontakt med butiker runt omkring lokalen, det har varit mindre stök nu en period.
Attention: Man kommer delta i en brukardag på Universitetet med seminarier för Socionomprogrammet. Den 3 maj kommer man delta i ”Attityduppdraget” på Olof Palmes torg mellan kl 10-16. Ett tält kommer att finnas, filmvisning mm.
Länkarna: Sällskapet Länkarna i Kga fyller 60 år den 4 maj och man kommer denna dag internt fira med tårta. Ett mer officiellt 60-årsfirande kommer i samband med Riksträffen som anordnas 4-6 november 2011. Örebrolänkarna flyttar nu ut till sommarhemmet där man utökat öppettiden med lördagar fram till kl 14.00 för lite social gemenskap.

Sedan var det som sagt  var slut på informationsutbytet, varför de olika organisationerna i Beroendecentrums lokaler informerar om allt från nationella kongresser till läger i Kroatien framgår inte. Minns detta:

Brukarrådet är ett viktigt kvalitetssäkringsinstrument för att bevaka och mäta hur pass väl verksamheten uppfyller och har framgång i de uppsatta målen avseende bemötande, tillgänglighet och garanterandet av en god och säker vård.

Inte ett enda ord på de senaste, halvårets tre, träffarna har handlar om samtal om ovanstående. Men kaffe och kakorna var säkert goda alla tre gångerna.

Det här är alltså brukarperspektivet. Jag som trodde att det skulle vara mer än bara någon tjusig informationsrunda. Och vilket brukarperspektiv förresten? Är verkligen organisationerna representativa för missbrukarna? Minns Gerhard Larssons ord om de flesta missbrukarna är inte kända, inte organiserade i KRIS eller någon annan tolvstegsorganisation, inte ens i svenskvarianten Länkarna, inte heller i någon nykterhetsorganisation som Verdandi, de är inte heller anhöriga (kan de vara men inte i detta sammanhang), de är inte heller socialarbetare inom RiA. Det finns många problem med detta, förutom att brukarrådet inte består av brukare så är det inte representativt. I den offentliga debatten syns mest KRIS som brukarorganisation, men många har svårt att identifiera sig med den kriminella livsstilen med tatueringar, gymtempel, tjocka kedjor etc som är kännetecknande för KRIS. Därmed inte sagt att inte KRIS fyller en viktig plats. Men brukare är så mycket mer än ovanstående.

Brukarna, de som har ett missbruksproblem eller ett beroende, är så oerhört många i vårt land, och mångfalden är stor. Dessa båda faktorer framkommer sällan i det offentliga. Det är synd. I England finns något som heter UK Recovery Walk. Den syftar till att ge ansikten som röster åt alla som befinner sig på vägen bort från missbruk och beroende. Men den handlar också om att lyfta fram fördelarna för samhället med effektiv och fungerande behandling mot missbruk och beroende. Den vill sprida ett positivt budskap om att preventionsåtgärder fungerar samt att det går att bryta ett beroende. Det blir de goda förebilderna, de som varit i missbruk med som nu är på väg mot något annat, mer positivt, men det blir också en samlad bild över hur diversifierad skaran av individer är. Marschen är också en protest mot den diskriminering och de fördomar som finns i samhället.

Marschen har fått många deltagare i England, och vi är några som har funderat på om detta skulle fungera i Sverige. Finns intresset i Sverige för något liknande? Behovet finns i alla fall. Det vore rätt coolt om en marsch kunde ordnas i Stockholm, med start i riksdagshuset så att politikerna kan visa sitt intresse för frågorna och med avslut någonstans med nån typ av happening. Och i tåget går allt från kedjebetyngda KRISare, till supporters från IOGT, till Lisa, 58 år och läkare som aldrig synts i något organisationssammanhang, till Kalle 21 år och nykter narkoman sedan 2 månader, till Lars 47 år med 7 års nykterhet från flaskan, till deltagare i subutexprogrammet i Stockholm som samlas under plakat från Svenska  Brukarföreningen där de kräver en humanare och mer lättillgänglig substitutionsbehandling, till representanter under SIMONs banderoll, till Maria Larsson (minister med då kanske ett nyuppväckt intresse) osv. Det vore coolt.

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7 reaktion på “Brukarperspektivet”

  1. Great to hear that you are contemplating a Recovery Walk in Sweden. The recovery movement in the UK grew out of (at least in part) a dissatisfaction with policy and treatment. Policy has now changed to a recovery orientation and there is much happening across the country now in terms of activism, peer support and connecting.

    It’s odd for authorities in Sweden to say that there is no evidence for the 12 steps. There’s plenty. If you google ”how AA and NA work” you’ll find it and Dr David Best did a review of the evidence base for recovery for the Scottish Government which may be the most comprehensive document to date. It’s got plenty in it about the evidence. There’s a link to it from here:http://www.scotland.gov.uk/Publications/2010/08/18112230/0

    Nice site I’ll keep coming back! Do you know of any other European sites like yours?

    1. I just realised I only answered in an email… I usually always replies here too… Yes, it due time for a recovery movement in Sweden. In 2007 I ended up during a train trip next to the woman who was chairman of the swedish organization for relatives of drug addicts, we were both heading to the biannual biiig conference on drug rehabilitation and drug politics in Sweden and we spoke over the fact that there is no either organization or movement looking after the interests of the wide spectra of drug addicts (recovering or pre-recovering) in Sweden. In fact, grew more and more angry over it, and on my blog from that day I wrote about how repelling it was that there was a conference arranged by the state about us, and we were not represented (except from a small info stand outside the conference which NA had), I wrote that we should start a trade union for addicts. But I think a recovery movement is far better… 🙂

      Then 12 step. In the official treatment policy for Sweden, 12 step philosphy for alcoholics is approved, but not for narcotics. There is not evidence in the way that the (narrowminded) higher education and research community has decided there is evidence, it is about lack of meta analysis from scientists on the international level. The mighty US based Cocrane institution has only conducted a meta analysis for the alcohol addiction (as it differs soo much (not)), however I know that the smaller Campell institution is on their way to present a review of the narcotics addition treatment and 12 step. And that might alter the recommendation… Or not. Despite what one might think about the 12 step movement, there are a few who have recovered that way I think. In my opinion this points out that there is really a need for an international union of pro-recovery people who can put pressure on both the governments and the science world…

      Unfortunately I am not so updated on international sites (or recovery movement), but I am becoming more and more interested in the possibilites it could represent!

  2. Hi PeaPod!
    Today I read a great site about knowledge in needle exchange and wonder why we in Sweden have such a negative debate and resistance about the needle exchange program in Sweden, where you have reached much further I belive. We have needle exchange today in two cities, Malmö and Lund in the southern of Sweden. Now after many years of debate we get a try out program in the capital of Sweden, Stockholm. But the resistance from the moderates party (the biggest) is still there. They are afraid of needles at the streets and a “fear” that this type of health care gives the country more addicts.

    So, in one way the debate need to be balanced. I think of course that we need to talk about the pros and cons about harm reduction. We have to see it from both sides but we cannot take away the right to healt care for addicts, I mean.
    So I would like to hear from you about your experience under the years and I would very much see you contribute to the debate in Sweden.

    As you now my friend Magnus and I are now starting up an organization which main focus is to fight back the stigmatization and discrimination of addicts in Sweden. We are planning to arrange a Recovery Walk in Sweden and for that we need to learn from the UK. We now have an initially valuable contact with Ann-Marie Ward and your excellent site Binge Inking.
    So I hope that you can comment something about needle exchange and. It would be valuable experience and arguments I belief. Other topics is of course the research and experience about stigmatization and discrimination in the UK.

    I also give you a translated article from one of the biggest newspaper about the decision to give needle exchange a try out in Stockholm down here.

    Stockholm municipality for experimental (SEPs)

    23 May 2010 at 21: 34, last update: 23 May 2010 at 21: 35

    ”It is not needles that kill.” The word was social Commissioner Anna König Jerlmyrs (M), when the issue was debated in syringe exchange Stockholm City Council on Monday evening.

    But there were needles which became the conservatives ‘ first defeat after five years in power in City Hall. For the yes-Stockholm will be the study of needle-exchange programme for the municipality intravenous drug users. There is nothing unique. Verging on unique is it favorably to the moderates, the largest party in the Stockholm City Council, is forced to see themselves downwoted in a sensitive issue. And that representatives of the smaller opposition party is triumphant in the rostrum over a proposal that was made four years ago.

    ”This day we have been waiting a long time,” said Karin Rågsjö (V).

    But syringe exchange issue is also a charged issue that cuts across the block border and hit a wedge through the Alliance . For the first time the small brothers in the Alliance stuck his neck out in unison, and sought the aid of block border to achieve results in a point deducted in the back burner for many years.

    It,s about a small group of severely excluded, as it is important to get in touch with … a health policy action,” said Ann-Katrin Åslund (FP).

    Matter then? Since 2006, it is possible for municipalities to apply for controlled liberalisation be handing out free needles to drug users. Is it ethically correct? Yes, a right for everybody to not become infected, according to the promoters. No, a form of legalisation, according to opponents.

    Several investigations brought about the scientific basis has not made the Conservatives more convinced. But rather caused further concern about Stockholmarnas reactions, if more guns lands on the ground.

    It is a democratic irony that Conservatives now along with the County Council to take the matter in the case, and submit an application for an attempt at syringe exchange in Stockholm.

    ”We have different opinions, but we will take responsibility”, was Anna König Jerlmyrs information

    http://www.svd.se/nyheter/stockholm/stockholm-forsokskommun-for-sprutbyte_6189461.svd

  3. Hi Magnus and your good friend Jimmy who I corresponded with today again via email.

    My fellow director of the UK recovery Federation Alistair Sinclair and I will help in any way we can for you to see recovery walks in your country.

    Alistair and I have had many years experience working in services that try to help people in to recovery too and have set up the federation to try and mobilise and galvanize people in recovery in the UK to help in the areas that you also speak of.

    We are having a conference in September 9th the day before the UK National Recover walk, this year in Wales Last year in Scotland and in 2009 in England and would welcome anyone from your country who wants to learn more to take part if you can make the journey.

    The UK Recovery Federeration is calling on recovering people to “put a face on recovery” and offer “living proof” of recovery and is inviting a contingent of recovering people to tell their story to a new audience not to themselves, to treatment professionals, or each other, but to the larger social community.

    In Scotland we have adapted from the Faces and Voices of Recovery Bill of Rights: I am sure The Recovery Bill of rights could be adapted for your country too. Please see link.

    http://www.facesandvoicesofrecovery.org/about/campaigns/bill_of_rights.php

    In Scotland we have adapted it and it now looks like this below.

    We will improve peoples’ lives, their families and their communities if we treat addiction to alcohol and other drugs as a major public health and social care concern.

    To overcome these concerns we must accord dignity to people with addiction and recognise that there is no one path to recovery. Individuals who are striving to be responsible citizens can recover on their own or with the help of others.

    Effective help can be rendered by mutual support groups, social care, voluntary sector services, health care professionals. Or any combination of these.

    Recovery can begin in a doctor’s office, A&E Department, treatment centre, church, prison, peer support meeting or in one’s own home. Recovery happens every day across our country and there are effective solutions for people still struggling. Whatever the pathway, the journey will be far easier to travel if people seeking recovery are accorded respect for their basic rights.

    1. We have the right to be viewed as capable of changing, growing and becoming positively connected to our community, no matter what we did in the past because of our addiction.

    2. We have the right, as do our families and friends, to know about the many pathways to recovery, the nature of addiction and the barriers to long- term recovery, all conveyed in ways that we can understand.

    3. We have the right, whether seeking recovery in the community, a physician’s office, treatment centre or while incarcerated, to set our own recovery goals, working with a personalised recovery plan that we have designed based on accurate and understandable information about our health status, including a comprehensive, holistic assessment.

    4. We have the right to select services that build on our strengths, armed with full information about the experience, and credentials of the people providing services and programmes from which we are seeking help.

    5. We have the right to be served by organisations or health care and social service providers, that view recovery positively, meet the highest public health and safety standards, provide rapid access to services, treat us respectfully, understand that our motivation is related to successfully accessing our strengths and will work with us and our families to find a pathway to recovery.

    6. We have the right to be considered as more than a statistic, stereotype, risk score, diagnosis, label or pathology unit – free from the social stigma that characterises us as weak or morally flawed. If we relapse and begin treatment again we should be treated with the dignity and respect that welcomes our continued effort to achieve long term recovery.

    7. We have the right to a health care and social services system that recognises the strengths and needs of people with addiction and coordinates its efforts to provide recovery based care that honours and respects our diverse backgrounds and cultural beliefs.

    8. We have the right to be represented by informed policymakers who remove barriers to educational, housing and employment opportunities once we are no longer misusing alcohol or other drugs and are on the road to recovery.

    9. We have the right to respectful non-discriminatory care from all service providers and to receive services on the same basis as anyone else who uses health, voluntary or social services. The criteria of ‘proper’ care should be decided exclusively between our service providers and ourselves. It should reflect the severity, complexity and duration of our problems and provide a reasonable opportunity for recovery maintenance.

    10. We have the right to treatment and recovery support in the criminal justice system and to regain our place and rights in society once we have served our sentences.

    11. We have the right to speak out publicly about our recovery to let others know that long term recovery from addiction is a reality.

    We look forward very much too getting to know you all much better.

    Big hug and take care of each other as this journey can be very difficult.

    Annemarie Ward
    Director UK Recovery Federation

    http://www.ukrf.org.uk

    1. Hi Annemarie! I heard of the email! I am very grateful for your comment and for your support and for u sharing what you have achieved. I am positive it will be most beneficial to keep in contact. UK and Scotland are so much ahead of us, and maybe the situation is similar in other European countries. I keep thinking of all the possibilities that could come from a closer and stronger cooperation across Europe or more. And yes, it is difficult in many ways. I have learned the hard way that I needed peer support from other recovering addicts on my journey away from addiction (one of many clues for me), and when I went on to university to study ”treatment work” I learned (or more correctly I read as I didnt accept the ”knowledge”) from a school book that recovering addicts were/could be something negative in treatment work, the same attitude I met when I started to apply for jobs in the nowadays dominating outpatient treatment organizations… So I am convinced this way is the way we need to take in order to help changeing some that need changing…

      I do look forward to future contacts!

  4. Thanks for such a full response to my comment!

    I work in the treatment sector, so I’m no longer involved with needle exchange directly. We work with folk who are ready to make the transition to abstinent recovery. I took a look at a report on peer-led needle exchange a while back:http://www.bingeinking.com/2011/peer-delivered-syringe-exchange/

    Tim Bingham at INEF would be a good contact for you on the subject. His website is at: http://inef.ie/

    I like the idea of developing a recovery orientation in needle exchange services.

    I’ve dealt with the relationship between recovery and harm reduction a few times in my blog and so does Jason Schwartz at Addiction and Recovery News: http://addictionandrecoverynews.wordpress.com/

    Happy reading!

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