Former users unite

`Asking an addict what his opinion was about treatment - about anything in fact - would be like a dog asking the fleas on his back what they thought of fur. That might sound a bit rough, but that's the truth of it," says Tommy Larkin. "That's what most addicts believe the world thinks of them, so most wouldn't think there was any point in even trying to have a voice. Who'd listen to fleas?"

Tommy Larkin is the co-ordinator of the Union for Improved Services, Communication and Education (UISCE) - a representative body for recovering heroin addicts - formally founded in June last year. With his background in addiction counselling at the Merchant's Quay project in Dublin and at several centres in Britain, Larkin was chosen by the North Inner City Drugs Task Force to take charge of the fledgling UISCE.

UISCE's is run by its membership of nine staff and voluntary workers. When asked about the concerns of recovering heroin addicts now on State-run methadone maintenance programmes, Larkin points to a survey UISCE carried out among drug addicts on the street and at drop-in centres last year.

"We listed 10 issues and asked people to indicate which three they considered the most important. Survey results are empirical data which we can bring to the task-force and the statutory bodies," he says. "They can't dismiss data the way they might individual users' complaints."

The issue that most concerned users was homelessness, with 78 per cent stressing it. "Sixty-one per cent highlighted concerns about their treatment, and some of the other things that worried or annoyed them were around discrimination, having to use Benzos [Benzodiazepine, a drug available on prescription often misused by addicts to supplement methadone or heroin] and prostitution.

"We have to do something about the methadone situation," he continues.

Phillip (38), an addict who has been stable on methadone for almost four years, explains addicts' concerns about the "methadone situation": "In the clinics there seem to be all different types of methadone being given out. It used to be a brown colour, called physeptone, and that was grand. It would `hold' you for 24 hours so you wouldn't go into withdrawals. But they started giving out this new green coloured one a few years ago and most of the time it's not actually holding you. It might only last you 16 or 17 hours and then you'd be looking for a `turn-on' [fix] from something else, just to get you through."

Asked whether he or any other addict had ever voiced concern with the dispensing clinic or chemist about this, he laughs. "Well I did actually once but you may as well be talking to the wall."

The then Eastern Health Board decided to move away from physeptone in its clinics in 1998, when it introduced the Methadone Dispensing Protocol. The advantage of the new green-coloured methadone, said a spokeswoman, was that it was more concentrated so less volume gave the same result. Larkin believes that if UISCE could achieve a re-examination of that 1998 decision it would give the union "a real mandate". "At the moment a lot of people think this whole thing [UISCE] is pointless. They think: `What's the point? Who's going to listen to drug addicts?' "

Nuala (30) says the thing that most wears her down is the unrelenting sense that she is seen by wider society as unworthy of respect, or even of being afforded basic dignity. In particular she cites the "contract" she had to sign with her local chemist she visits every day, to collect her prescribed methadone. The contract, with a well-known city centre pharmacy, is headed "Contract for Supply of Methadone". Among its 13 points is the following: "I understand that I must attend the pharmacy alone to leave in my methadone prescription and to collect my methadone. In the event of my coming to the shop and bringing one or more people with me, I realise this could mean the end of [X pharmacy] supplying me with methadone."

Nor is the addict who signs this contract allowed to talk to any member of staff other than the pharmacist, to "loiter" in or anywhere near the pharmacy nor to buy anything else in the shop when collecting methadone: "So if you need some toothpaste or shampoo or something you have to leave the chemist and come back again," says Nuala. "It's as if you're a junkie when you're collecting methadone and if you want to do anything else you have to leave and come back as a `normal' person. It's as if just because you have to take methadone you must be a `junkie' and so you must be a shop-lifter, who can't be trusted. It's a charter of segregation. I thought I had a good relationship with my chemist. I thought I was accepted."

There are numerous other issues UISCE members wish to see addressed. Mary (29) would like an ombudsman to liaise between the authorities and methadone service users: "It's not that we want a confrontation with anyone. We'd just like if there was someone neutral we could go to and say, `Look, this needs to be sorted out'."

Given that there are an estimated 10,000 heroin-users in the Dublin area alone - a population Eoin Ryan TD and chairman of the National Drugs Strategy Review has called the "most marginalised group in society" - there is clearly a hugely disaffected, unhappy sector of mainly young, working-class people who feel they have no control over their lives. Eoin Ryan had his first meeting with UISCE a fortnight ago. "We've been wanting to talk to active drug users for a long time now to see how we could make treatment more accessible to them," explains Ryan "It was a helpful meeting."

The North Inner City Drugs Task Force, which instigated UISCE, is one of 14 local task forces established under the First Ministerial Task Force on Measures to Reduce the Demand for Drugs. Under the chairmanship of Pat Rabbitte TD, the task force came into being in 1996, in the aftermath of the murder of journalist Veronica Guerin. While these task forces for the first time gave local communities a tangible say in measures to address their problems, only in the past few months has there been a statutory recognition of the value of including drug and methadone service users on these forums.

Larkin wonders whether Irish society is yet ready for a group like UISCE: "Is a society which perhaps understandably feels threatened by drug addicts, that sees them as people who commit crime, who threaten people with syringes, who don't think about anything but where the next turn-on is coming from, going to want to change that stereotype? I mean, can people see addicts as normal men and women with hopes and dreams, tragedies and despairs like anyone else?"

It will be a challenge, if not an affront, to many people's view of drug-addiction. But such bodies have existed and thrived in other countries since the 1970s. In fact, invited to attend an International User's Day conference in the Netherlands last September, UISCE made contact with similar groups from eight other European states. Organised by the Landelijk Steunpunt Druggebruikers or the Dutch National Interest Group of Drug Users, the conference was a series of meetings where users and professionals met and discussed pertinent issues, on users' terms. Among those represented were the users' fellowships and networks from France, whose representative spoke of concerns about the estimated 80,000 addicts some of whom, he said, were injecting substances which could cause abscesses and which had resulted in amputations; from Russia, whose speaker said some 90 per cent of new HIV cases were among intravenous drug users; and from Belgium, whose representative described a "repressive" statutory attitude to drugs-users, whereby anyone who was convicted for drug dealing could lose the right to vote.

UISCE is not another therapy group, stresses Larkin, but a forum for methadone service users to get involved in the decisions around the drugs issue which, when made, will most acutely affect them.

"A lot of people I'm sure see addicts as just strung-out criminals whose only concern in life is getting the next fix. Or if they get into treatment, people assume that's the end of their problem, that they're home and dry. But that's certainly not how a lot of addicts feel. There is a lot of discontent with how things are being done. And what people should realise is that if an addict is not happy with their treatment, or feel they have no control over it, the chances of their succeeding in their treatment are very much reduced."

The group is still in its infancy, but is making strides. As well as meeting Eoin Ryan, Larkin and colleagues attend not only their local drugs task force meetings but others also. Last month they produced the third issue of their newsletter, UISCE. It is distributed free to users.

"But we are really just winging it at the moment. We're sharing offices here with Dublin AIDS Alliance, and we don't even have a computer or printer of our own. We're borrowing everything. But it is important that we succeed."

UISCE can be contacted at 53 Parnell Square, Dublin 1