KNOWLEDGE EXCHANGE SEMINAR SERIES Karen McElrath & Julie Harris 14 June 2012

1. Institutional stigma and the delivery of methadone maintenance: A comparison of clients' experiences from N/S Ireland  KNOWLEDGE EXCHANGE SEMINAR SERIES Karen McElrath & Julie Harris 14 June 2012

2. Why methadone? • Helps stabilise people who are dependent on opioids (namely heroin) • Reduces withdrawal symptoms and cravings • Longer acting than morphine • Can be administered orally • One dose per day • Inexpensive

3. Early view of methadone maintenance Nyswander, Dole & Kreek, 1960s. Best way to treat opioid dependence is through the combined use of “methadone maintenance” (i.e., prescribed daily use of methadone over the long term) and various psychosocial interventions designed to meet users’ needs.

4. Early view of methadone maintenance • Belief that pharmacological benefits of methadone were limited unless individuals could experience “social rehabilitation” that would help them address their social, personal and health problems. • Treatment settings characterised by trust between patients and treatment staff.

5. Expansion of methadone maintenance treatment (MMT) • Late 1960s and 1970s, increase in MMT programmes in US • Changes in treatment delivery – increasing rules & regulations characterised MMT in the US • 1980s-current, aspects of the US model are adopted in other countries

6. What does the international research tell us about the effectiveness of MMT? • Reductions in a) heroin use, b) fatal overdoses involving heroin, c) behaviours that pose risk for HIV and Hepatitis C, and/or d) crime. • Problem: Several MMT clients leave treatment within the first few months. Upwards of 40-60% leave treatment within 12-14 months of commencing it. • Like other kinds of treatment, favourable treatment outcomes are more likely to occur when people stay in treatment longer.

7. MMT in Northern Ireland and the Republic of Ireland • NI (Since 2004): 466 were being prescribed methadone or Subutex, of whom 52% were in receipt of methadone maintenance (31 March 2010). • ROI (Since 1992): 9,204 individuals were in receipt of methadone maintenance (1 August 2010). • Supervised consumption is the norm; some take-home doses permitted.

8. How did we conduct this study? • Our data come from four different studies in which we have been involved. • All of the studies used face-to-face interviews to collect data from people who were dependent on heroin, 81 of whom had direct experience with methadone maintenance. • Two of the studies were conducted in Northern Ireland, and two other studies took place in the Republic of Ireland (Counties Louth and Dublin). • Data from the four studies were collected between 2004 and 2010.

9. Main findings • MMT clients feel like they are viewed as “addicts” regardless of stage of recovery. “Addicts” are not to be trusted; “addicts” are assumed to be engaging in crime. • MMT clients feel like “undeserving” customers. • MMT clients feel like passive recipients of treatment.

10. MMT clients are “addicts” and “addicts” are not to be trusted “One time I was buying toothpaste - toothpaste like. She [counter staff] thought I was trying to steal it. Why would I steal toothpaste? And if somebody was stealing toothpaste, why would they steal it from the chemist where they get their methadone? I know it’s hard on the chemist too. Maybe they get ripped off sometimes. But see being treated like that? Everyone needs to go through that to see what it’s like.”

11. MMT clients are “addicts” and “addicts” are not to be trusted “Loads of pharmacists in town told meth clients that they can’t bring friends [with them into the pharmacy]. You can’t bring friends unless they are buying something. What about other people picking up prescriptions for drugs? How come they bring friends?”

12. MMT clients are “addicts” and “addicts” are not to be trusted “It doesn’t take a genius to know why you’re in there. You had to sit in a chair. She had to call my name before I could go to the counter. You’d swear I had leprosy. And you couldn’t go in [the pharmacy] if someone else was in there getting their methadone. There was like a screen and you could see the top of their head [someone else taking the methadone]. I’d wait outside ‘til they finished.”

13. MMT clients are “addicts” and “addicts” are not to be trusted: Contracts R: “I think they [pharmacy staff] just need to treat people better from the start. They look at us like dogs, [as if we are] robbing and all. You see that paper [list of rules; contract] they give us when we start? We’re not supposed to even look around the room.” I: “What room? The whole pharmacy?” R: “Yeah, we’re just supposed to look straight ahead, not look around at all. And we have to sit there.”

14. MMT clients are “addicts” and “addicts” are not to be trusted: Contracts • NI: Contract is signed by the client, the prescriber, the dispenser and the key worker, however, the behaviors outlined in the contracts related to the client only. • NI: Clients faced “possible discharge” or the withholding of methadone for “consistent tardiness,” for missing two consecutive appointments, and for “inappropriate” behavior in pharmacies.

15. MMT clients feel like undeserving customers: Lack of privacy “You can ask to go in there [separate and private room], but you have to make a point of it. I ask [for privacy] as there’s members of my old work and others [present] . . . there’s always people standing there and I get really embarrassed.”

16. MMT clients feel like undeserving customers: Lack of privacy “Private? It’s not really that private. They walk out with the cup [of methadone] like. And plenty of time there’s some people in there – especially at lunch hour. Walks out with the cup, and says ‘C’mon [name of respondent].’ And I go into the room – not really a room, that’s where they take the photos. And everyone knows what’s in the cup.”

17. MMT clients feel like undeserving customers: The wait “Sometimes I have to wait half an hour to get my meth. She has to serve everyone first, even people who come in after me. I’m waiting there and people looking at me like I’ve got two heads. She’s getting paid for helping us, but you feel like you have to kiss her toes.”

18. MMT clients feel like undeserving customers: The wait “I would be nervous going in there. There’s a few reasons. Your ordinary people come and get their prescriptions. Could be your mum’s mate, someone down the lane, someone in the UDA.”

19. MMT clients feel they have no input into treatment decisions • Clients resisted “one size, fits all” dosage levels to achieve stabilisation (although few voiced concerns about inadequate dosages) • Dosages used as punishment at times: “Some chemists in town – if you’re late, they’ll pour methadone down the sink. Pour it down, I swear. There’s you – using heroin again.” (ROI)

20. MMT clients feel they have no input into treatment decisions: Concerns over progress “I’m afraid of methadone. The years are flying by and I’m still on it. They won’t let me come down [reduce dosage].” “I think of all the people who have used heroin. Loads of them, and I only know a few people who got off it. I know people who’ve been on methadone for years. That scares me.”

21. MMT clients feel they have no input into treatment decisions: Concerns over progress “Methadone’s a cure but methadone isn’t a long-term cure. Methadone is there to cure you in the short-term, but they’re doing it wrong here. They’re putting people on methadone for years and years and years . . . If you go and say to them, ‘Could you put my methadone up?’ They say to you, ‘You don’t need it to go up.’ But see if you go in and say to them, ‘Could you start to take me down off my methadone?’ They turn around and tell you that you need to go up.”

22. Main conclusions • Attitudes by some service providers derive from stereotypical assumptions about people who are dependent on heroin. Stereotypical assumptions are fuelled in part by methadone regulations that focus more on controlling “addict” behaviour than treating disease • Institutional stigma can disempower MMT clients, whereas recovery requires empowerment

23. What might be done? 1) Reframe MMT provision so that clients are viewed as customers or consumers 2) Establish advisory groups of service users who can contribute to the development of anti-stigma interventions 3) Introduce patient-focused advocates who can engage in dialogue with treatment providers, dispensers and prescribers 4) Encourage clients to (re) develop nonaddict identities. Alter the institutional identity of addiction services, e.g., “recovery centres” (White, 2010)

24. What might be done? 5) Implement ways to encourage service users to have a stake in programme ownership 6) Involve like-minded empowered others in the treatment process