Making choice real

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How can we improve the range of options available to bring more people into services, asks DDN.

The options that exist for drug treatment surely influence a person’s choice on whether to enter treatment at all. Broadly speaking there’s the pharmacotherapy option, using one of two main drugs as opioid substitution therapy (OST) – methadone or buprenorphine or both at different times – and there’s psychosocial support. Both are vital components in the package of support that people may need at different times in their lives to help reduce or end illicit ‘problem’ drug use. But there’s an unhelpful polarity that exists between interventions targeting immediate abstinence, and substitution treatments promoting stabilisation and harm reduction.

The use of OST has for a long time been challenged politically and through mainstream media. This cultural opposition, despite a strong evidence base for harm reduction, suggests that politicians and the public are still not fully aware of the benefits of this treatment approach.

In 2010 the (UK) drug strategy made clear the government’s concern that ‘for too many people currently on a substitute prescription, what should be the first step on the journey to recovery risks ending there’ and that it wanted to ‘ensure that all those on a substitute prescription engage in recovery activities’. Two years earlier in 2008, the Scottish Government published The Road to Recovery, stating ‘Recovery is a process through which an individual is enabled to move on from their problem drug use towards a drug-free life and become an active and contributing member of society’. Both strategies were essentially saying the same thing; drug treatment MUST be about becoming illicit or problem drug free, with the ideal being abstinent from drugs/alcohol.

The UK drug treatment sector refocus was sharp, and the proactive involvement of abstinence-based fellowships, groups and programmes proliferated. The sector was rebranded to reflect this aspiration and the lexicon was changed. ‘Recovery outcomes’ replaced treatment retention goals, and recovery coaches and mentors were set to support the change. It brought about the showcasing of visible abstinence-based recovery in the community and let communities see that ‘people can and do recover’. Services became places for working towards ending illicit drug use and OST prescriptions, and exiting drug free in a timely fashion.

The government’s drug strategies would also influence clinical management and pharmacotherapy protocols, as noted in Medications in Recovery: re-orientating drug dependence treatment: ‘The task was to provide guidance to clinicians and agencies so they can help individuals on opioid substitution treatment (OST) achieve their fullest personal recovery, improve support for long-term recovery, and avoid unplanned drift into open-ended maintenance prescribing’.

But there’s a significant problem with this, believes Stephen Malloy, who as a trainer, consultant and volunteer board member of the International Network of People who use Drugs (INPUD), has an insight into the disparate interests of stakeholders.

‘The current paradigm dictates that the individual’s choice is simple – to engage with treatment and progress towards becoming a drug-free and active member of society, or not to engage. There’s no “half way” option… if you’re not compliant then it’s quite likely you’ll be exited from the service.’

Considering that the person making the decision to enter treatment could be motivated by an acute crisis in their lives, it’s a tough commitment to make.

‘Charities and commissioned services must have on their governing board representatives from the population they’re seeking to treat and support.’ Stephen Malloy

‘Suppose you’re a 40-something heroin user and you’ve been in and out of treatment several times over the last 20 years,’ he says, by way of example. ‘Your health is failing and you’re experiencing withdrawals from a break in supply of heroin on the street and there’s lots of other difficult stuff going on in your life, so you present at a drug service looking for a script. Imagine saying, “well I’m only looking for a script to keep things stable. I might continue to smoke cannabis, I might still have a drink now and again, and I want a bit of flexibility in my prescribing, because I might use illicit heroin again”.

‘I’m quite sure that the prescriber would explain that this would be impossible because of the risks attached to using on top of a prescription, in addition to prescribing being tied to compliance with a recovery programme and drug testing. So instead of saying this – which may be a fairer representation of where you are at – you agree to engage with a programme that you may not be “ready” for.’

Malloy meets ‘lots of people in this situation’, who appear to engage effectively with treatment until the crisis has passed. ‘Then it’s a question of what happens next. Signs of returning to illicit drug use, or noncompliance with any recovery programme activity will likely bring about challenge by the service. Continued noncompliance will see you detoxed and exited from the services.’

Saying whatever needs to be said to get treatment can completely undermine ‘one of the key factors that is pivotal to progress’ – the relationship with workers or care providers, he says. ‘That relationship has to begin with honesty.’ And for it to be honest, the person must have choices that are viable.

Fundamentally, we still don’t know enough about what motivates an individual to access treatment, he says, and so drug-related deaths (DRDs) continue to rise, with many of these people not in touch with treatment services.

Scotland’s system of having a drugs death database offers insight through ‘a kind of social autopsy’, he explains. This shows whether the person was working, their economic circumstances and whether they had been in treatment and on OST. It also looks at whether they had been in hospital recently or in touch with a GP, ‘and what you routinely see is that 70 per cent of the people who die were in touch with some form of service in the six months before their death’ – maybe a GP, hospital, community psychiatric nurse, or mental health care worker. Figures from 2014 show that only around a third of people were prescribed ORT (predominantly methadone) at the time of death.

With more than 100,000 people accessing OST on a daily basis, this still represents ‘a very significant comm­unity’ who are working to ‘stay compliant’ (or not get caught if they’re not) within prescribing and dispensing regimes. Concern about misuse has seen the pharma­ceutical industry introduce medicines with ‘abuse deterrents’ added (naloxone’s addition to buprenor­phine, for example) ostensibly to prevent their injection or reduce the chances of diversion. Urine screening takes place routinely to corroborate what the client is saying. Malloy is disturbed that ‘recovery workers who’ve been through treatment programmes them­selves are now being coached to catch someone else’.

Even The language around OST is negative, he points out – ‘nobody likes you going to the chemist for that’, or ‘you’re not in recovery’. This, coupled with the broader stigma attached to OST, ‘doesn’t frame drug treatment as a particularly attractive prospect, when everything around it is about squeezing you out of it.’

With the pharmaceutical industry racing to develop forms of OST – such as fast-dissolving buprenorphine products, which offer additional benefits to clients and healthcare professionals, and which are easier to dispense, supervise and consume – he believes it’s never been more important to understand what’s driving each new development: ‘Is it about patient acceptability, clinical effectiveness, cost effectiveness, or systems compliance?’ Alongside current and new forms of oral (sublingual or on the tongue) buprenorphine we are familiar with, we may see longer acting formulations – implanted pellet-type formulations and depot injections.

‘For the person whose life depends on it, the situation could not be more crucial and requires a fundamental shake-up in the way we view and engage people who use drugs, those receiving OST medicines, service users and patients,’ says Malloy.

He throws a challenge to the treatment sector: ‘charities and commissioned services must have on their governing board representatives from the population they’re seeking to treat and support. At the moment we might hear, “we consulted with service users” – but they don’t actually empower them to be involved in the decision-making. You’re back to a rather paternalistic approach of “here’s what we’ll do for you”.’

Further to this, ‘the pharma and regulatory industry has to make greater efforts to engage the patient population,’ he says. A way forward could be through community advisory boards for OST patients and drug users to learn about the regulatory machinery for newly developed drugs.

‘We have to start having this conversation,’ says Malloy. ‘Because the market is changing – and if we don’t respond to some of these changes, they will be imposed on us. We’ll find ourselves with options that very few people will properly understand or have been consulted on.’

This article has been produced with support from Martindale Pharma, which has not influenced the content in any way.