People enter treatment with a mixture of fear and hope. The first interactions are the building blocks for what happens next – so are we getting the conversations right, asks DDN.
When someone plucks up the courage to come into a treatment service, they can feel at their most vulnerable. At this crucial point, the quality of communication – what’s explained, how it’s said, what’s asked – can shape that vital next stage, and even the entire course of their treatment.
Conversations with people who’ve accessed opioid substitution therapy (OST) give a mixed picture. Some of the experiences we’re about to share are recent, some as long ago as two decades, but what we wanted to know was – did you have options? Were they explained clearly? Did you have time to ask questions? Were you involved in discussions about review and titration? And how did all of this affect you?
Two distinct scenarios began to form – while some described compassionate, collaborative care, others recalled feeling excluded from decisions, under-informed, or judged. So how much of this was down to the quality of the conversation?
For some, the first contact with treatment services was daunting but ultimately positive. Reagan, who accessed treatment at a clinic in Wales, recalls feeling frightened but supported. ‘The worker was good and helpful,’ she says. ‘I was always involved in decisions with my treatment.’
At the clinic she felt comfortable to ask questions and ‘always had them answered’, and if they didn’t know the answer ‘they would find someone who did’. Later on, hospital staff and midwives were a different story – ‘I was treated so bad in hospital, I was even asked to find my own veins even though I never injected,’ she says. ‘They just assumed that I had, but I was on methadone.’
Julian, who first sought help in the mid-1990s, was fortunate to experience a positive and person-centred approach through his GP. Rather than defaulting to methadone, the doctor took time to assess his situation and discuss alternatives.
‘I was given more than one option of medication… the information was very clear and detailed and I was made aware of what to expect during my treatment,’ he says. Regular reviews and clear communication left him feeling supported and involved: ‘One of the most crucial aspects was that I was made to feel that I was no longer alone in my attempts to become drug-free, and that I had an enormous amount of support and encouragement.’
However, not everyone was offered that level of engagement.
Several contributors describe being given only one treatment option, typically methadone, with little discussion of possible alternatives. Louise, who entered treatment in 2004, says simply ‘no’ when asked if she was offered more than one option.
Before arriving at rehab she had a methadone script, which she ‘either sold, or used on its own or with heroin’. Her reception in treatment was not a two-way conversation back then – ‘the more heroin you said you took, the more methadone they gave you, so it was ripe for abuse.’ Was she reviewed and titrated? ‘Not really,’ she says. The chemist offered little by way of further encouragement. While the methadone ‘definitely took the edge of and stopped the rattle’, the chemist ‘used to say it was worse that heroin in some respects and always said it was best to get off it,’ she says. ‘It was very sugary then, and rotted teeth,’ she adds.
Fifteen years later Cathy from Liverpool was among many others who were still missing out on a partnership approach to treatment: ‘I was only given one option of treatment and that was methadone,’ she says. ‘The information I was given was only brief and I was told I would be put on a low dose.’ However, she was reviewed frequently – the start of something more positive – and she found the medication really started to help, so she was only using heroin ‘once every few months’.
While she felt that she was treated ‘fairly well’ she stumbled with the lack of consistency: ‘changing key workers made it very uncomfortable to open up… I’d just got used to the keyworkers, then was told I was being moved to another service.’ She finally detoxed at home during COVID and is now heroin and methadone free, but remains grateful to the drug and alcohol services, as ‘without methadone I probably wouldn’t be alive today’
Lack of clarity – the missing conversations that should take place – is a common part of the experience. Fraser Parry hears of many such situations in his role as drugs advocacy and support advisor at Release, and says it’s ‘not at all uncommon’ for people to feel excluded from decisions about their treatment. ‘Often people do not have different medications properly explained to them,’ he says. ‘For example, they may not understand that if they choose buprenorphine they could move away from daily supervision more quickly; or that opiates detected in a UDS [urine drug screen] doesn’t mean that a methadone script will be stopped or reduced.’
First impressions are important, and he sees the consequences of many lost opportunities to engage. When practitioners don’t ask the right questions during those first interactions, the cues are missed. ‘One individual I spoke with had – after taking a long time to build up the courage – booked in for his first medical appointment with the intention of asking to be put on methadone,’ he says. ‘At the appointment, without being given the opportunity to even discuss his preference he was given a script for buprenorphine and sent on his way.
Unsurprisingly, he never picked up his first dose, and his trust in the treatment service was hugely affected. This could have been easily avoided had the clinician just asked a couple of simple questions.’
Lorraine received OST under two different health boards in Scotland and had contrasting experiences in each.
When she first went for treatment ‘the doctor was nicer, he used to speak to you like a human being. I had a nicer worker too.’
The doctor explained to Lorraine that if he started her on methadone she could be on it a long time, and may find it hard to come off. ‘He sat me down and explained a lot,’ she says. ‘It was nice that he approached it like that. He wanted me to have all the information first so I could make the right choice for me.
‘He’d ask me if I wanted to go up a dose, if I was comfy on it, if I wanted to come down. It helped stabilise my life – I was shoplifting, in and out of jail all the time. So it removed a lot of the chaos and I felt like I was pretty in control of my treatment with that doctor and that worker.’
Moving to a different area, Lorraine had a completely different experience – a drugs worker who ‘kept knocking me back – for rehab, for anything basically’. It felt ‘really harsh’, like they ‘wanted to tell you what to do instead of listening to you. Really speaking down to you all the time… You’re struggling with drugs and they’re giving you it tight all the time, accusing you of giving them a dirty sample, stuff like that.’
She resorted to taking the Medication Assisted Treatment (MAT) standards and ‘slapping them down’ in front of him, asking for a detox. ‘His attitude changed as soon as he saw them,’ she says. ‘He said oh yeah, I was going to get you a detox anyway. I’d been fighting with him about it for a year and just him seeing that I knew what I was talking about changed my treatment straightaway.’
Lorraine’s two experiences demonstrate the dramatic difference in potential outcomes. ‘If you get a worker who will talk you through everything you need to know, the difference is night and day,’ she says. ‘It’s more like you’re a person who can work with them to sort things, than you’re a problem they need to solve. That kind of support can mean you turn your life around within a few years rather than being stuck in one kind of treatment for most of your life.’ DDN
My first experience wasn’t great. I attended my partner’s appointment with him to see his keyworker, to get his methadone script. I was full of shame and guilt and hadn’t admitted to anyone – except my partner – that I was using heroin and had a habit.
Up until this point I’d been sharing his supervised script that he was collecting daily. He was drinking it in the chemist and saving some in his mouth to pass to me waiting outside. As our heroin consumption increased, the script was no longer holding us both, and at this appointment he was going to ask for it to be increased.
What actually happened at the appointment was that he told his keyworker I was pregnant – another thing along with the heroin addiction that I was in complete denial about. I was 22 years old, had been taking heroin and crack for the last four years and told no one. I had a five-year-old little boy and was five months pregnant.
The reason I didn’t seek support before is that I was CONVINCED they would take my child from me. The guilt and shame I felt and how harshly I judged myself – and knew how others would judge – stopped me from reaching out to get any harm reduction or treatment support.
At that appointment they did what I knew they would do. They told me they would need to contact social services and that I would need a specialised midwife to take on my care for my unborn child and my OST prescribing. It reinforced my belief that I was a terrible person and mother.
I was put on a methadone script and increased quite quickly to 60ml – a pretty high dose as I’d been taking unprescribed methadone – using on top of that, and was pregnant. My dose was given to me daily and supervised, and they would monitor me to see if I needed more.
Methadone was the only option offered to me. My treatment provider didn’t explain to me the correlation between how much methadone I was being prescribed and my heroin use, and I didn’t know that it was a substitute that would help me get off using heroin. No one explained how it would stop some withdrawals physically, but my brain would still crave heroin and work against the medication. I didn’t know that I would still feel agitated and that my thoughts and emotions would still be pretty much unbearable.
I had a pregnancy bump and was queuing up to take my methadone in front of everyone else that I had been hiding my drug use from. It was humiliating and I felt like the worst mother in the world and a murderer – I really thought I was killing my unborn child, yet I felt I had no choice but to use. I could now no longer function without the methadone in the morning and was taking heroin all through the day too. My habit massively increased, partly because my ‘secret’ was out and partly due to the shame and guilt I was carrying.
My care then got passed on to the substance misuse midwives. They was amazing – discreet, compassionate, and gave me all the information about harm to my baby: the facts, not just that I was killing my baby, but the harms that using was doing and how I could minimise the risk. They helped me reduce the amount of heroin I was using, and then eventually stop and stick to my script.
They treated me like a mum that was trying her very best to drastically reduce the harm I was causing my baby and put me on a reduction plan with realistic goals. Once I engaged and kept all my appointments with them, they offered me a detox bed, specifically for drug-dependent expectant mothers on a maternity ward, which I could stay on until our baby was born. I managed to stay substance-free until after the birth and although I did use again, my baby was born without withdrawals. I had done what I needed to do for her, which was a miracle to me.
I think the treatment plan saved me, I really do. It reduced the harm to my unborn child and it also helped me to keep my children.
Emma is now enjoying life in active recovery
Grateful thanks for input to this article: Emma, Julian, Louise, Red Rose Recovery, Lorraine, SDF, George Charlton, Reagan, Cathy, Fraser and Release
Clearer Conversations is an ongoing series and we would love to hear from you if you are willing to share your experiences of treatment – please email the editor, claire@cjwellings.com
This series on Clearer Conversations in OST has been made possible by an educational grant from Camurus, who have had no involvement in the content of these articles.