With drug-related deaths once again hitting record levels, it’s never been more urgent to make sure we’re properly engaging with so-called ‘chaotic clients’. DDN reports.
‘Engagement is always a tough one,’ says Dr Bernadette Hard, GP specialist in addictions with Kaleidoscope. ‘It’s always problem in services, but that’s the nature of the disease.’
The gamut of engagement can run from highly motivated clients paying for their own treatment, via self-referrers who achieve good levels of stability but may begin to drift away, through to those who struggle to meet appointments and frequently drop out of treatment – if they engage at all.
Much has been written about so-called ‘chaotic clients’, and a perennial challenge for services has been finding ways to bring more stability to this group, especially as they feature heavily in drug-related death statistics (see news, page 4). Scotland has long wanted to pilot consumption rooms, which have proved effective in other countries, but legal wrangles with Westminster have made this impossible. The closest anyone has come so far has been the establishment of a ‘safe consumption’ van in Glasgow, which has made national headlines despite technically operating outside the law.
Heroin-assisted treatment (HAT) – widely accessible in the UK until 1967’s Dangerous Drugs Act put paid to it, and available elsewhere in Europe – is showing signs of making a comeback, however, with a pilot programme launching in Scotland late last year (DDN, December/January, page 4) and more and more police and crime commissioners coming out in favour of it.
The results from the Glasgow HAT pilot, which has been incorporated into the city’s Enhanced Drug Treatment System (EDTS) have been promising, particularly for people who’ve experienced homelessness or been involved in the criminal justice system (DDN, March, page 8). One major benefit of the scheme has been to enable these clients to engage with other services, such as BBV, mental health or housing teams.
A number of trials are also taking place to provide long-acting buprenorphine to chaotic clients, which means people no longer need to make regular trips to the pharmacy to collect medication – or be supervised taking it, something that many find stigmatising and humiliating. Delphi Medical have so far provided around 25 clients with long-acting buprenorphine, starting around ten months ago. ‘When we first looked at the product it seemed to be aimed towards more stable groups, but the benefits quickly became apparent for the more chaotic group,’ says head of medicines management, Colin Fearns.
It was a similar process at Kaleidoscope, says Hard. ‘Initially the general feeling was that it was the obvious choice for people who were quite stable. I was probably the only voice saying, “Let’s try it on people who are treatment resistant”. It took more than three months to persuade anyone in the chaotic group to try it, she says. ‘Then the first two did OK, but with the third it was outstanding. This was a lady who’d been in and out of services – multiple restarts, prison, sex working, domestic violence, living in a night shelter. She’d been in hospital with ulcers on her legs, with infective endocarditis for her heart valves from the bacteria from injecting, massive self-neglect. She was mentally beaten, completely disengaged, very hostile, very suspicious.
‘I had very low expectations,’ states Hard. ‘But I thought I can’t make this worse.’ A week after she finally agreed to an injection ‘I didn’t recognise her’, and a year later she remains drug free and is working and looking after her children. ‘What she fed back was that having that stable dose turned off the cravings, and combined with that she was able to basically just hunker down.’
Eliminating the need for regular attendance at pharmacies also removes people from potential triggers and from meeting people who might be carrying drugs or who may bully them for their prescription. Unlike sublingual buprenorphine, where it can still be possible to get some effect from heroin, long-acting injections shut this down completely.
Incorporating something like long-acting buprenorphine, however, can often require a fundamental readjustment on the part of both service users and services, explains Fearns. ‘From a psychological point of view for the client, the worker and the service as a whole it was alien,’ he says. ‘It can be really difficult to grasp that someone doesn’t want to come into service because they don’t feel they have to – because they’re well. If you’re used to sitting at home, waiting for your drugs, taking drugs, doing nothing, and now all that’s suddenly removed you’ve been launched into recovery, so it’s about what you do with your time.’
As Alex Boyt stressed in October’s DDN (page 8) when it comes to prescriptions the key issue is flexibility. Prescribing needs to be ‘massively flexible, but sensible as well’, states Mick Webb, coordinator at Community Driven Feedback (CDF) in Bristol. This applies even with something like HAT, he says, with services needing to remember that every prescribing regime should be tailored to individual needs. ‘It has to be delivered with the right level of independence – people need to feel that they own what they have.’
Other wider prescribing options could potentially include medicinal cannabis, as recently highlighted by Nick Goldstein (DDN, October, page 12). ‘Why can’t I go to a drug worker and say “I don’t want these horribly addictive drugs you’ve got me on, but smoking weed really helps with coming off them – can you prescribe me medicinal cannabis?”’ says Webb. ‘They’re scared because they don’t have the guidelines, but we can help write those guidelines.’
Prescribing regimes need to be based on thorough and extensive research of what people want, which would also be a key way of starting to build trust with populations seen as chaotic, he believes. ‘What is there for crack users? Absolutely nothing.’ The obvious way to do this is via peers – a ‘massively under-used resource, and they’re often treated abysmally and won’t do anything about it, because they don’t know their rights. The people I’d speak to if I had a problem would not be drug workers, it would be my peers who know me well. At the moment the whole system needs to be broken down and built from the street upwards.’
The major part of any drug worker’s job should always be about how to empathise and understand, he believes. ‘I’ve seen it from all sides. I’m a service user, I’ve been a prescriber, I’ve worked in management. In some ways since COVID it’s been a good thing – people on daily supervised consumption suddenly found themselves on weekly, while some people would have preferred to stay on daily because it’s the only contact they might have with a health professional. It should always be about the individual.’
And it’s the peers who should be training drug workers, he stresses, ‘not other people working in the field – because there are certain restrictions and things you can’t talk about. With peers there aren’t those barriers – you can have some fun with the training and start stimulating that passion again.’
But for now, trust remains lacking, he warns. ‘Sadly, for a lot of people the best option is to not have anything to do with services. People aren’t prepared to take the risks – they feel drug workers aren’t people that you can be honest with. So I think it’s about training and employing the very people that they’re trying to reach. I don’t think there are many other options.
‘Start from the street up, just start with a blank canvas,’ he says. ‘Getting out, doing street work and asking people what’s going on. We’re here, we’re right in front of people. This “hard to reach” expression is worn out. If people are being called hard to reach, they’re being made hard to reach.’
This article has been produced with support from an educational grant provided by Camurus, which has not influenced the content in any way.