One size fits nobody

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.

3 COMMENTS

  1. Sorry this is a horrible biased piece that lacks and quantification or accountability.
    I will happily write an piece where I brake down each point from the perspective of some one with a decade and a half of one to one work in a number of areas and disaplines.
    I will be unwilling to disclose my identity as I was a very long term user of substances who has managed to never mention this in PSI as I believe it has had no influence on my ability.
    All I ask is an email address to send my reply to in these comments.
    Imthe mean time please at least remove here say and conjecture. Also a renaming this as “OST is not the only fruit” maybe more accurate.

    Yoursinhonesty

    • Thanks for your comments. I have to point out that, far from hearsay, the piece records people’s own experiences taken at a face-to-face meeting. The meeting had ground rules of respect for everyone’s point of view. Your experiences are also welcome: please email claire@cjwellings.com Thanks, Claire Brown (editor)

      • Hello,
        Thank you for your response. I will first refer to this.
        “Thanks for your comments. I have to point out that, far from hearsay, the piece records people’s own experiences taken at a face-to-face meeting. The meeting had ground rules of respect for everyone’s point of view. Your experiences are also welcome.”

        I do indeed stand corrected, I misused “hearsay”. I would have been better using the term ‘unsubstantiated’. No evidence is given by a group of people who have stated they lie. No right of reply or contention was provided for prescribers or any people providing Recovery. The event being funded by a company with a vested interest in long term methadone prescribing in the UK gives a bias. As does the very aspect of setting up a hitching post labelled “Come all who want to complain!” which in itself causes bias. The very fact there are not positive comments or constructive comments identifies this as a negative bias.

        With much anecdotal –

        “Not necessarily true or reliable, because based on personal accounts rather than facts or research.”
        – 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 –

        “A verbal or written remark expressing an opinion or reaction.” so anecdotal?
        suggest new action points for services;
        First point of active issue. When? When are solutions provided?

        “Drug-related death statistics are well documented and at their highest level since records began”
        This is true, but an open statement which reads that the following must be a logical conclusion.

        “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.”
        This needs to be defined; is 12 years on methadone the right duration? Where is the evidence to support this statement? This is a website and a hard copy magazine you can hyperlink the relevant information or cite relevant sources. How about talking about diamorphine OST, or time based treatment, or the idea that you enter Recovery when you are ready to stop using illicit drugs? You’re already lacking balance.

        “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”
        Again, this shows that lack of balance in the article.

        “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?”
        Why these two individuals were selected to chair this meeting is not explained, and neither are either of their credentials, which speak to the validity of their presence. Dr Chris Ford has in fact been quoted in the past as saying “methadone works, stop the interfering” (The Guardian, 2010), which presents further bias on the part of the chair of the meeting.

        “It was clear from the outset that the dwindling state of funding was affecting each group of participants, with many people being told that their choice of OST was no longer an option because of cuts…”
        This is a sweeping statement with far reaching implications, so maybe explore this?

        “‘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.”
        Here we start to see conjecture. You have set a room where you can say anything and not be challenged. Did the person ask for the buprenorphine by brand name? Where and when was this? These are all easy matters to fact check without bringing the individual’s identity to light.

        “Others were having their dose of OST reduced without their consent, leading to them becoming unstable.”
        This in fact is hearsay, the speaker is reporting what can only have come from a third party, with no evidence. Were these reductions due to non-attendance? Were they due to medical concerns such as ECG results or other medication? No detail of other relevant information is given, presenting an unclear and, again, biased view.

        “In John’s case an abstinence agenda”
        Is John using on top of his Opiate Substitution Treatment?

        “was being used as ‘law’ to reduce his medication: ‘My prescription keeps me alive'”
        This statement needs clarification, the service user has again made a grand statement with no follow up by the meeting moderators. Last time I checked OST comes under a non medical intervention.

        “and I’ve been on it for a good 12 years,’ he said”
        12 years is a long time. In fact I would say long enough, and then some for someone with motivation to change.

        “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…”
        Take a moment on this, because this as a Recovery focused worker is the one that I hear….

        …”don’t understand, or believe in, harm reduction.”
        These “new workers”, the ones so maligned in this report, who have a greater chance of being people who have been though Recovery (simple time line of existence of services against average recovery time and life span and recent employer bias for people who have been though Recovery).

        “but I’ve seen too many friends die when they stop treatment”
        Okay this is a big one. Did they die because they recovered; or did they die because they were unsafe? OST is not the only form of harm reduction and is not the philosophers stone. Most people I know who passed away were on OST, both personal and professional.

        “…and I’ve got to live to bring up my kid.”
        And this is the tragedy. Identifying opiate addiction as a disease that will kill and can’t be Recovered from. It pains me when so many of our American doctors who write on Recovery from opiates say how much they admire the UK for not treating it as a disease, yet we have cases like this and many others in the article.

        “For those trying to access OST, either for the first time or after a break in treatment, new barriers had appeared.”
        Barriers to access a controlled drug. I hope there were some measures taken to avoid incorrect prescribing. I took opiates a fair amount but did not enter OST as my use was not dependant. If I’d been given OST with no restriction it would have created a person who would be methadone dependant for no reason. Free drugs are free drugs.

        “I had to jump through so many hoops to get into treatment,’ said one participant,”
        Again, control measures (introduced by the BMA) in place before someone is given access to OST, does this really sound so unreasonable?

        “another commented: ‘I wanted to try being drug free, but felt very odd and soon relapsed.”
        This is a very unclear statement, was this person on OST? Were they abstinent from illicit drugs?

        “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.”
        If the person was opiate/OST free then yes, this is a prescribing issue. Opiate Substitute Treatment. If you tested negative to opiates and OSTs then there would be no reason for you to re-access OST. However, I would like to believe you were offered PSI and well-being support.

        “I would have been dead when I overdosed if my friend hadn’t been there.”
        You made an active choice. You may be a vulnerable adult, but you still have capacity. We issue naloxone for this now. Should there be methadone fountains available for when our resolve fails? Change is hard, Recovery is Change.

        “Climate of Mistrust
        This lack of flexibility was cultivating a climate of mistrust.”
        A somewhat large jump in logic there….

        “They asked me about my motivation and didn’t like it when I said, ‘I’m here, isn’t that enough…”
        Ah, so we are to be OST fountains! Goodness prevent a Recovery Worker trying to help you Recover!

        “…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”
        I would have liked further comment on this as it seems to say ‘your life and system isn’t perfect so why should I listen to you?’

        “while Deb commented that her reaction had been, ‘If you don’t want to listen, tell me what you want to hear.'”
        Examples? You know, to quantify what is meant by this.

        “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.”
        So the medical community are required to change the rules that were made to make sure people don’t get killed by OST? Did anyone question why a mother was off her prescription? I used drugs for years. I also took responsibility for this. Services can not be beholden to single individuals. Some ownership of being on OST MUST be accepted by the service user.

        “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.”
        So ‘Angela’ says she lies because she thinks her Recovery Worker wants her to lie? And is daily consumption really unliveable? Before OST did she not score daily? Live a life around accessing money for drugs? I must admit that is clearly harder than going to a place Monday to Friday to be able to be stable.

        “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.’”
        So she lied to services and to the NHS. She at no point actually states she discussed any of this with anyone, or got any profession advice. She KNEW!

        “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.”
        Yes, at a Recovery Project…

        “Linda had frequently experienced the attitude of ‘there’s a queue over there for people like you’”
        People like who? People seeking support with drug and alcohol Recovery?

        “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’.”
        Sorry but I take so much offence at this. Every project I have ever worked at has Service User Feedback, so if they didn’t use this I can only question the validity of this as both would be misconduct and treated seriously.

        “Top-down’ culture”
        Whose terminology is this? Did service users actually utilise this term independently, with full understanding of its contemporary context?

        “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.”
        Should your surgeon also have survived a car crash? Should your mental health support also be mentally unwell? Have I as a prolific drug user led you life in the exact same ways? It does not matter. We as workers use empathy not sympathy. The gordian knot was not solved by a knot maker.

        “‘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.’”
        This is yet more hearsay, and has no context. The participant is reporting someone else’s experiences, and fails to explain what “their friend” was doing at the service. She said, she said, he said, they said?

        “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”
        Should you have not been these from the start?

        “so disclosed that I was on methadone.”
        Something you should have disclosed before taking the post, as a drugs worker.

        “Suddenly I went from star worker to being before a disciplinary for using drugs.’”
        Or, was it for misleading your employer, a lie of omission is still a lie nonetheless. I have to declare my medication, and this is not an OST. Yet you do not say were not fired for it.

        “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].’”
        Yes, this is an industry issue. Professional Recovery workers are paid F all so yes we follow the money. As more money is spent from the budget on OST then yes people will leave substance use now as it’s a high stress job that asks a lot of the worker.

        “‘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.’”
        You lied to not be called a liar, and were then called a liar? If you want to explain a £100/day habit to a worker and not be willing to tell them, in confidence, how you fund it, then yes the worker will question. I can say for a fact I can’t afford £2,800 of anything a month without returning to certain behaviours.

        “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.”
        Once again this is a real issue. Your worker is most likely delayed as someone else has kicked off when they were late, or a serious untoward event has occurred. Your OST is a tool to make sure you’re not in withdrawal for your worker to complete PSI. The fact that the prescription is seen as a carrot shows a basic misunderstanding of Recovery.

        “‘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.’”
        Once again, this will be a local policy thing that your worker will have had you sign or have been informed of verbally. You will have failed to achieve the requirements of your service user contract Ignorance is not an excuse, much like UK law.

        “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.”
        Okay, an outlier. If he was not using daily OST would be harmful as we would be creating an addiction. In fact in this instance there would be a lot of question of how this started and why before a prescriber became involved and the fact this is unusual in the UK. And no, no prescriber in there right mind would prescribe that drugs that he is abusing. We have a lovely term for it: medication seeking behaviour. So when Tom dies from his Purple Drank the prescriber will not lose their livelihood.

        “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’]”
        So by all measures he has just identified that OST is unsafe for him.

        “and how long would I be subject to supervision for?”
        If you use as you say? Forever, to avoid stock piling and overdose. Never because you don’t need OST, you need PSI.

        “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.’”
        So you want the government to fund your chaotic, irresponsible use of a psychoactive substance?

        “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?”

        Well;

        1) Involve services and prescribers in this. You are making goals that can’t be achieved.

        2) Don’t accept funding from companies that benefit from the accursed “maintenance model” and then say this is a balanced view.

        3) Stop listening and basing all the industry on the vocal minority and seek balance.

        Every time I see articles like this, all I see is my fellow Recovery Workers and prescribers be spat on and told it’s our fault. In districts where case loads can hit 100 people, we are told – be flexible; be non-judgemental; ‘you’ve not recovered because your worker changes’ and ‘you have a right to have OST and use on top’.

        I look back and I remember the word “Recovery” being a beacon of change. Empowerment of service users, and that this is no longer treatment or a medical issue, but, instead a thing that will have workers and service users work together to long term and sustainable change.

        Instead all I see is entitlement and ignorance. I challenge that with each and every one of my clients. Change is coming and it’s certainly not good news. No one is special when the numbers get crunched and the papers ask: How much?

        OST and general opiate treatment is responsible for the majority of spending in the sector, yet more and more people die, and less and less people present to services with opiate issues. It doesn’t take a genius to figure OST will not be free soon. Or that time based treatment models will become standard for OST. We have young people destroying their bladders on ketamine and yet there is no outreach nor long term plan to catch this cohort before it becomes a burden upon public spending, the only way OST really became a thing (look up opiate dependency before and after OST).

        We need to lose this “disease” model that I hear so often. Recovery was meant to bring change. Instead what we have is entitlement and fear where services spend thousands of pounds on supervised consumption and naloxone.

        In the words of Scroobious Pip, it’s time we as a nation “get better”.

        Kindest Regards,

        Every Worker This Job Burns Out

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