In this first blog post, I pick up on something Niamh Eastwood (Executive Director, Release) said at our very first Learning and Advisory Board (LAB) meeting in September 2022. Eastwood flags to the group: ‘One thing that struck me is this idea of “ripping up the rulebook”. I’m not sure that the rulebook was ripped up’. Referring to the Drug misuse and dependence: UK guidelines on clinical management, more simply called the Clinical Guidelines or Orange Guidelines, she explains how rather than being ‘ripped up’ during these early days of the COVID-19 pandemic, it may have been more closely adhered to. That is, the emergency responses from public health authorities to COVID-19 may have inadvertently made certain aspects of these Guidelines more permissible rather than less.
I think the rulebook actually allows for the practices that we saw during the pandemic. And what we have seen historically is an issue of risk but that risk is very centred on the clinicians’ sense of risk to themselves rather than thinking about how we get people into treatment and how we should make treatment as accommodating and supportive and as patient-centred as possible. So, I think there’s a little bit of digging to do in unpicking that narrative – that everything that happened is permissible under the Orange Guidelines.
For Eastwood, treatment systems have tended to centre on the clinician’s risk in prescribing Opioid Agonist Treatment (OAT) medication rather than a cost-benefit approach to risk based on what might work best for the client. For Eastwood then, it was not the rulebook, as in the Clinical Guidelines, that was ripped up, or even any formal sense of a rulebook, but these invisible, often unspoken unofficial rulebooks that govern treatment and actually obstruct the Guidelines. Inspired by this intervention and invitation for this blog, I meet with Eastwood at the Release offices, along with Release’s Drugs Team Coordinator, Shayla Schlossenberg, to do a bit more digging.
Using the example of how people were moved from supervised consumption or daily pickups to weekly or fortnightly pickups as services tried to reduce client and staff contact and cope with reduced opening hours and closures of some pharmacies and drug services, Eastwood and Schlossenberg reiterate that the Clinical Guidelines specifically allow for and encourage such practice as a progressive step in someone’s treatment. ‘In fact, the Orange Guidelines specifically say that people should not be retained on daily pick-up unless there is a clinical reason to do so, and in the vast majority of cases where daily supervised consumption continues there is not’ (Eastwood). These COVID regulations and pressures, then, enabled what Eastwood described in the LAB meeting as a more individualised approach to risk, where, if the risk was deemed low enough, clients could take home greater amounts of OAT and move to collecting their medication less frequently. In many cases, the potential ‘cost’ of supervised and daily pickups – the potential of contracting and spreading COVID-19 and the infrastructure needed to deliver these modes of administration safely – started to outweigh the risks associated with these more flexible dosing regimens, namely diversion and overdose.
Schlossenberg and Eastwood explain how treatment systems have for a long time been concerned with diversion and overdose at the expense of the potential benefits of flexible dosing (unsupervised and less frequent pickups of OAT). This has been a particular issue for those who are homeless or living in hostels and thus this is where, for Schlossenberg, some of the pandemic’s most liberatory effects were felt:
There’s often a lot of concern about people who live in hostels and diversion of medication. There are lots of extra paternalistic measures taken towards those individuals, a sort of lifelong punishment for at one time being street homeless. If you had anything about homelessness in your file then you were on supervised indefinitely because you were an untrusted person to the treatment system. So, seeing people who live in hostels being given takeaways did give a sort of excitement.
In the harm reduction service where Schlossenberg was working as the pandemic broke, they report a sense of excitement as people felt more trusted by this move to unsupervised consumption (of OAT medications) and less frequent mandated contact with services. This is a sentiment Schlossenberg has seen reflected at the national level since starting at Release. Eastwood and Schlossenberg even note how helpline calls concerning OAT reduced during this period, perhaps suggesting more satisfaction. But as it was the threat of COVID-19 and the pressure of COVID regulations that pushed treatment systems into these more emancipatory frames and patient-centred risk assessments, rather than a valuing of their benefits in and of themselves, it is perhaps not surprising that these changes have not been sustained. Schlossenberg says: ‘that was a positive change that we’re now seeing fully undone again. And so now people are rapidly being put back, if they haven’t already been put back on supervised scripts.’
It was not the practice of more flexible dosing that was suddenly valued for the reasons people who use drugs have been fighting for for decades – some of which Eastwood and Schlossenberg witnessed in their work during this time, with service users reporting feeling less stigmatised, more trusted, respected and in control of their treatment – but it’s practicality to cope with the pressures of and reduce the spread of a new infectious disease. This is not dissimilar to what happened during the 1980s and ‘90s with the arrival of HIV. While the risk of HIV introduced harm reduction measures like needle exchange it did so to reduce infection risk, and namely, infection risk to a wider population, and not because of its other benefits to the affected communities or any intrinsic valuing of their lives and lifestyles. Talking on this in relation to COVID-19, Schlossenberg says something telling. Schlossenberg notes how services and workers were ‘forced, whether or not [they] trust them to, to treat [people receiving OAT] like [they] would treat other members of the public’. Therefore, while the official frameworks that allow for distrust to govern these OAT spaces were being disrupted, the underlying beliefs may not have been.
Returning to what was disrupted (if only momentarily) during this time, Eastwood and Schlossenberg are inviting a deeper conversation on how services are regulated and the priorities that emerge. As one manager of a leading England-wide service told me recently, there is a fear of the regulatory body, the Care Quality Commission (CQC), when it comes to prescribing OAT. Schlossenberg describes quarterly meetings on drug and alcohol-related deaths that take place where services are asked to account for their practices in manners which push them into a state of defence and protection rather than one honouring the life of the person lost or looking at the wider context of their life and the structural forces that contributed to their passing. While these meetings and this accountability continued during the COVID lockdowns, there was an understanding of the wider risks of COVID which afforded a tolerance towards flexible dosing. The pandemic then was a unique time in which fears around the CQC reduced and services were given more freedom to cope with the pressures of the situation. But, with the risk from COVID easing (or being re-calculated as less severe) and no real change to these underlying structures and the belief systems around flexible dosing as risky and clients as untrustworthy, protectionist ways of working have been quick to resume.
The speed of this return has been accelerated by a growing concern around methadone-related deaths. This is of course incredibly concerning to Eastwood and Schlossenberg, but something they feel should be seen in the context of more people being in treatment and not to the exclusion of the benefits that this flexible dosing made to many people’s lives. In fact, it is most likely that people were attracted to treatment during this time precisely because of this flexibility and more hands-off approach. Inviting a more in-depth understanding of these complexities, Eastwood says:
If we’ve got more people in treatment which we know is a protective factor against overdose but there is an increase in pure numbers of deaths related to methadone, we need to be working out what that actually means, and I don’t think that work has been done.
For Eastwood and Schlossenberg, we have been too quick to revert to pre-pandemic dosing regimes and ways of working without doing this work. Trying to do some of this work, then, in this project through a qualitative survey and ethnographic inquiry, I hope to establish the effects these flexibilities, along with other changes, had to the lives of clients and workers, and whether a reversion to less flexible dosing and other pre-pandemic ways of working is a proportionate and useful one given rising methadone deaths.
In taking up the invitation to start digging a little deeper and unpicking the narrative of a ripped-up rulebook, what starts to reveal itself is a complex system of governance made up of formal structures and bodies as well as informal and often invisible forces and value systems. At various points in our conversation, ‘the rulebook’, as in what governs treatment, unravels and multiplies to include a clinician sense of risk/what is right to them, who we trust, stigma, the regulatory body, and ‘the mainstream/majority culture that is fearful of overdose and diversion’. These are the unspoken rulebooks that for Schlossenberg and Eastwood get in the way of what they think should be the actual rulebook, the Clinical Guidelines, which they see as a ‘force for good’ in their advocacy work and drive for more patient-centred care. The excitement and innovation found in the pandemic then was that it gave the Guidelines a chance to operate. But, for Schlossenberg and Eastwood, this was a path that was stopped too soon: ‘they never really give it a chance to play out in a way that really allows you to assess whether those risks occur or not’ (Eastwood).
The challenge then, including for this project, is to hold open a space for treatment innovation and diversity in an environment that is resistant to change: ‘the system won’t let you, the system doesn’t want change’ (Eastwood).