With much anecdotal evidence that people are losing their OST of choice, a meeting was held at the DDN conference to ask, ‘are you getting what you want?’ The comments suggest new action points for services.
Drug-related death statistics are well documented and at their highest level since records began. Evidence also tells us that opioid substitution treatment (OST) is protective against opioid deaths, when given at the right dose and for the right duration.
At the DDN conference we took the opportunity to run an interactive session with people in treatment, those who were thinking about it, and others who had experienced it for better or worse. In an informal group, Dr Chris Ford and Stuart Haste invited people to comment on their situation. Could this help to shed light on a lost connection between services and those whose lives – and quality of life – depended on them?
It was clear from the outset that the dwindling state of funding was affecting each group of participants, with many people being told that choice of OST was no longer an option because of cuts: ‘I really wanted to try buprenorphine, as I’d tried methadone twice before. But the worker said I couldn’t have it because it wasn’t right for me and too expensive,’ said one member of the group.
Others were having their dose of OST reduced without their consent, leading to them becoming unstable. In John’s case an abstinence agenda was being used as ‘law’ to reduce his medication: ‘My prescription keeps me alive, and I’ve been on it for a good 12 years,’ he said. ‘But they keep saying I need to reduce – that it’s the law. I know it isn’t, but I have to fight at each appointment. The new staff don’t understand, or believe in, harm reduction – but I’ve seen too many friends die when they stop treatment and I’ve got to live to bring up my kid.’
For those trying to access OST, either for the first time or after a break in treatment, new barriers had appeared.
‘I had to jump through so many hoops to get into treatment,’ said one participant, while another commented: ‘I wanted to try being drug free, but felt very odd and soon relapsed. I asked to come back into treatment quickly so I wouldn’t lose everything but they said it’s not possible to do that because there are rules. I would have been dead when I overdosed if my friend hadn’t been there.’
Climate of Mistrust
This lack of flexibility was cultivating a climate of mistrust. ‘They asked me about my motivation and didn’t like it when I said, “I’m here, isn’t that enough”,’ said one person, while others had become used to feeling that services were not listening to them. ‘If you have your own answers, don’t ask me for mine,’ was Linda’s response to this; while Deb commented that her reaction had been, ‘If you don’t want to listen, tell me what you want to hear.’
In practical terms, services’ unwillingness to be flexible could put an insurmountable hurdle in front of treatment: ‘I missed the first day of my three-day pick-up because my child was ill and I had to go back for re-titration,’ said one mother.
Some felt that they could not risk being honest about their needs or challenge treatment provision for fear of the consequences: ‘I feel that I can never say what’s going on with me or ask for something like an increased dose, because it means they will probably reduce me or put me back on daily dispensing, which is impossible as I need to live,’ said Angela.
Alisha was confronted with stipulations when trying to access hepatitis C treatment: ‘They told me I needed to reduce my dose before I could start hepatitis C treatment, but I knew they were wrong from going to a HCV support group,’ she said. ‘So I agreed to the reduction but bought some methadone to keep my dose the same. It’s madness that I can’t be honest.’
For many, the stigma of being identified as a ‘drug user’ permeated services and blocked the chances of a trusting and beneficial relationship with staff. Linda had frequently experienced the attitude of ‘there’s a queue over there for people like you’, while Billy’s experience was that ‘one worker said to me on first presentation – we know you people lie, so I will decide what you get’.
‘Top-down’ culture
They also speculated that the ‘top down’ culture of many organisations was affecting staff’s capacity to connect, particularly if they were not allowed to disclose to clients that they had themselves been in treatment.
‘My friend disclosed about her history of treatment and was quickly shown the door,’ said one participant. ‘The service manager’s reason for dismissal was that it was colluding with clients, which must not happen.’
Karl backed up this scenario from personal experience: ‘I was doing really well as a drugs worker and was offered promotion to team leader by my manager. I explained that I needed to share something to show I was honest and committed, so disclosed that I was on methadone. Suddenly I went from star worker to being before a disciplinary for using drugs.’
A trusting relationship with a drugs worker was seen as paramount to success in treatment, right from the entry stage. ‘I really need help but I’m scared of what they might ask me to do before I get a script,’ said Jake, while another participant demonstrated the importance of continuity: ‘I have had six key workers in the last six months – how can that be effective care? It’s a shame as well, because number three really listened, and it was then difficult to go back to the usual situation of not [being listened to].’
‘I never feel heard,’ said Dan, a theme echoed by many participants, including Linda, who described the all-too familiar experience of completing an assessment to enter a service: ‘They ask you how much drugs you are using and when you give your answer you risk being told that you can absolutely not be using that amount of drugs… Whenever I came across a person like that, I just used to say that they should fill out the form for me and I will sign it as they obviously seem to think that they know better than me,’ she said. ‘I feel like walking out as I am being called a liar.’
If she gets through this process, there can be a further wait before being scripted, she explained, and then a ‘carrot and stick’ approach to treatment – ‘but without the carrot on the end of the stick. For example, if you are late for your appointment you may not even be given your script and could be asked to come back another time. But if your worker is making you wait for ages, that’s just tough.
‘Sometimes you come to pick up your script and they’ve changed the amount that you will be taking,’ she added. ‘They have not discussed this with you first, but instead inform you when you come to pick up your script and by then it’s too late to do anything about it. Your script has been written up and it becomes a “take it or leave it” scenario.’
Understanding
For some who could benefit greatly from treatment and advice, the opportunity is negated by the fear that they would be misunderstood and coerced into treatment they did not want or were not ready for.
Tom had considered going into treatment to tackle his long-standing use of pharmaceutical opioids – primarily oral morphine capsules, supplemented with a mixture of codeine linctus and promethazine (known as a ‘dirty sprite’).
‘I have described my use patterns to drug services and asked if I would qualify for substitute prescribing,’ he said. ‘The service workers have said yes in principle, but what put me off going through the process was that I would be unlikely to be prescribed what I’m getting hold of now.
‘The other primary issue for me is supervision… I’d have to use something every day [breaking his usual pattern of spending ‘three days per week fairly euphoric and the other days clear headed’] and how long would I be subject to supervision for? I am hearing of people in different local authorities being stuck on daily supervised pick-up for years with no apparent end point… and that would be a problem – a deal-breaking one – for me.’
Clearly these are important issues that need talking about at the start of a trust-based relationship with a drug worker. The question that seemed to come from the session at conference was: how can we make sure that treatment moves beyond ‘take it or leave it’, to be tailored to the individual?
This article has been produced with support from Martindale Pharma, which has not influenced the content in any way.