‘I feel like I found myself again’ – Rethinking ‘recovery’ in a qualitative exploration of Heroin Assisted Treatment (HAT) service users’ experiences

doi:10.21203/rs.3.rs-2310440/v1

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Research Article

‘I feel like I found myself again’ – Rethinking ‘recovery’ in a qualitative exploration of Heroin Assisted Treatment (HAT) service users’ experiences

https://doi.org/10.21203/rs.3.rs-2310440/v1

This work is licensed under a CC BY 4.0 License

Journal Publication

published 12 May, 2023

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Background

Heroin Assisted Treatment (HAT) is an enhanced harm reduction programme designed for treatment-refractory opioid dependent individuals. The first HAT service in England was established in 2019, involving twice-daily supervised injections of medical-grade heroin (diamorphine). International research has produced promising evidence for HAT in reducing a range of intravenous drug-related harms and promoting myriad social benefits such as reduced criminal activity, increased social engagement and improved wellbeing. However, strict regulatory controls may constrain service users’ opportunities for social re-integration, inadvertently prioritising abstinence-focused treatment goals and definitions of ‘recovery’. The impact of HAT delivery from service user’s perspectives is not well documented, and this is the first qualitative research conducted within a fully operational HAT service in England.

Methods

We conducted semi-structured interviews with HAT service users in a North-East England drug treatment service (N=12). Data was subjected to thematic analysis, with common themes emerging inductively from the data.

Results

Participants overcame barriers to engagement and retention through self-motivation and commitment, supportive staff relationships and de-stigmatising treatment experiences that increased service users’ self-efficacy and sense of belonging. They reported multiple physical, emotional and social impacts, including minimised street heroin use and criminal behaviour, improved physical health, increased social engagement and emotional wellbeing.

Conclusions

Physical, social and psychological healing interacted throughout the course of HAT to facilitate holistic improvements in quality of life and wellbeing. However, HAT’s intensive treatment schedule was restrictive of patient’s daily activities, which could be mitigated through greater flexibility in treatment regulations. Middlesbrough HAT is an example of innovative drug treatment that offers continuing opportunities for success within a broad definition of recovery, in which abstinence sits on a spectrum alongside diverse forms of social, physical and psychological recovery from drug-related harms.

Harm Reduction

People Who Inject Drugs

Heroin Assisted Treatment

Opioid Dependency

Injectable Opioid Therapy

Recovery

Britain has the highest reported opiate using population in Europe (1, 2). Drug related deaths (DRDs) in England and Wales are at a record high (Office of National Statistics, increasing by 60% between 2010 and 2020 (3). Opiates (such as morphine and heroin) were implicated in almost half of DRDs (49.6%) and were highly prevalent amongst men aged 40–50 years (1, 3). Increased opioid related deaths have been attributed to changes in illicit opioid availability and purity (4, 5), co-morbidity and ageing in the opioid using population (6, 7) and decreased government funding for drug treatments and services (8). This has led to calls for policy reform and reassessment of drug treatment practices (9). Such reforms are particularly urgent in England’s North-East, where rates of DRDs are three times higher than in London (3). From a wider health perspective, citizens in Middlesbrough are statistically more likely to die from a DRD than a car accident (10). Thus, opioid dependency and associated preventable deaths are a worsening public health concern in the UK, particularly in Middlesbrough and the North-East.

Drug Treatment In The Uk

Over the past 30 years, UK drug treatment policy has oscillated between abstinence-oriented treatments and harm reduction services, which were initially designed to reduce drug-related harms such as disease transmission and criminal offending, without enforcing abstinance (11, 12). Support for maintenance-oriented harm reduction approaches diminished in the 2010s, with government guidelines re-enforcing abstinence as the primary goal of drug treatment (11, 13). This shift preceded a decade of steadily increasing DRDs and decreasing numbers of people in treatment (14). Despite this, Britain’s most recent drug policy paper makes little mention of harm reduction, continuing to define DRDs in criminological rather than public health terms, and advocate a ‘drug-free’ life for people with addition (15).

UK based drug treatment researchers, however, continue to evidence the effectiveness of harm reduction methods that prioritise destigmatisation and positive engagement with drug-using populations without enforcing abstinance (16). Such services have been shown to facilitate social and psychological improvements beyond crime reduction, increasing service users’ psychological and emotional wellbeing, social engagement and sense of belonging (12). Nonetheless, abstinence often remains the primary ‘goal’ in both real world medicine and clical trial settings (17, 18). Thus, evaluations of treatment ‘success’ are often tied to abstinance-based definitions of ‘recovery’, which may undervalue and undermine the many positive health, social and psychological benefits of harm reductionist approaches. Moreover, definitions of ‘recovery’ in drug treatment influence drug treatment design, delivery, development, policy making and funding decisions, directly impacting the treatment options available to individuals with substance dependency in the UK.

Standard treatment for opioid dependency in the UK is Opioid Substitution Therapy (OST), where prescription methadone or buprenorphine is provided, ranging from daily supervised consumption to take-home weekly doses. While OST is considered a viable and effective treatment for opioid dependency (19) an estimated 46% of opioid dependent individuals in the UK are not engaged with standard treatment models (20), with some individuals cintinuing illicit heroin use while in treatment (21). Barriers such as limited accessibility, stigmatisation and high-intesity treatment regimes may impede engagement and retention, with many individualus repeatedly cycling in and out of treatment (22, 23). This leaves a significant population of opioid users at increased risk of DRD, imprisonment, homelessness, and other health and social impacts related to prolonged opiate use (16). Alternatives to OST, therefore, may serve to address the needs of this opioid using population for whom OST has appears unsuitable.

Heroin Assisted Treatment: International Evidence

Heroin Assisted Treatment (HAT) is an innovative alternative to OST, intended to fill the treatment gap for treatment refractory long-term opioid dependency through a harm reductionist lens (24, 25). HAT consists of providing service users with injectable, synthetic grade heroin, known pharmaceutically as diamorphine/diacetylmorphine. HAT has been established in Switzerland since the mid-1990s, and was subsequently adopted into standard practice in Canada, Germany, Holland, Denmark, and Luxembourg (26). Evaluations of these services consistently demonstrate HAT as effective in reducing illicit heroin use, criminal behaviour and DRDs, and improving service users’ physical and mental wellbeing (24, 27 − 9,39,31).

In the UK, HAT was evidenced in the Randomised Injecting Opiate Treatment Trial (RIOTT) (32, 33). The RIOTT trial reported significantly decreased or discontinued illicit heroin use and improved treatment retention (compared to Methadone Management Treatment, MMT) as well as a general increase in patient psycho-social health and functioning (24, 32, 33). In January 2012, injectable opioid treatments became a recognised second line treatment for ‘the small number of people who have repeatedly failed to respond to standard methadone treatment or residential rehabilitation’ (34).

Heroin Assisted Treatment In The Uk

In 2019, Middlesbrough became the first town in the UK to offer HAT outside of a trial setting, followed closely by another clinic in Glasgow. HAT in Middlesbrough consists of twice daily diamorphine injections within an exisiting specialised clinic for drug and alcohol treatment. An initial quantitative evaluation of Middlesbrough HAT’s first year in operation evidenced a 60% reduction in service users’ criminality, significantly decreased street heroin use, reduced homelessness and improved psychosocial wellbeing (35). The mechanisms involved in facilitating positive outcomes and the overall impact of treatment on service users lives, however, are less well understood.

Middlesbrough HAT delivery is highly regulated, with strict eligibility criteria and monitoring procedures designed to mitigate risk for both service users and the public (36). Monitoring procedures include supervision during intravenous or intramuscular self-injection, weekly toxicity screening and daily breathalysation for identified alcohol users. Additionally, methadone is prescribed to alleviate withdrawal symptoms between short-acting diamorphine doses, with methadone collection monitored through contact with the pharmacy. Such highly monitored and inflexible drug treatment models have been criticised for controlling service users’ movements, constricting freedom and compromising patient autonomy (23, 29, 37, 38). It is not currently well documented how these constraints impact services users’ experiences, treatment desirability, acceptability, retention and effectiveness. It is essential, therefore, to understand the holistic impact of HAT on service users’ lives and consider potential interactions between treatment delivery, social functioning, physical health and psychological wellbeing.

Heroin Assisted Treatment – Service Users’ Perspectives

Qualitative research exploring service user experiences of HAT is limited (29). Romo et al (39) conducted ethnographic research and interviews with HAT trial participants in Spain. Findings supported existing research (e.g. 24, 40), reporting decreased illicit drug use and criminal activity, and emphasised the efficacy the medical model in opioid treatment in decreasing patient stigmatisation and encouraging social engagement (39). A recent ethnographic and interview study, also conducted in Canada, explored patient motivations for initiating injectable opioid treatment (25) but did not report explicitly on service users’ treatment experiences. Boyd and colleagues have produced a body of qualitative research exploring the experiences of participants from Vancouver’s HAT trials (41, 42, 43). Again, findings reported positive impacts of HAT on illicit substance use, crime, and health (44).

However, Boyd’s research also raises important concerns regarding the ethics of providing injectable opioids in a clinical trial setting, as treatment discontinuation negatively impacted participants, in some cases resulting in a return to illicit heroin use and DRD (41). Overall, HAT service users’ voices are notably absent from the evidence base, particularly British service users and those currently engaged in treatment. This study aims to address this gap in knowledge by prioritising Middlesbrough HAT service users’ lived experiences of treatment through qualitative data generation via semi-structured interview.

Study setting

The Middlesborough HAT service opened in 2019 within a specialised primary care service for drug and alcohol treatment. People who attend the controlled clinical setting receive twice daily supervised self-injected doses of diamorphine. HAT is open on 7 days a week between 8am to 6pm.

Data collection

The semi-structured interviews were conducted between 30/09/21 and 25/11/2021 using mixed purposeful and snowballing sampling (45). Participants included all active HAT participants at the time of research, plus two participants who were no longer in treatment. Data saturation was assessed continuously by evaluating already collected data regarding repetition of themes to ensure that the research questions could be answered, when data saturation was achieved no more inclusions were made. Interviews were conducted by two members of the research team (HP and FR) and were held in a private room at the HAT service to ensure privacy and confidentiality. The interviews were guided by a semi-structured interview guide developed by the researchers to assess different aspects of service recruitment, accessibility, treatment experiences and impact. Written informed consent was obtained by all participants prior to the interviews being conducted. Participants were renumerated with £20 voucher. Ethical approval for the study was obtained from the Health Research Authority (HRA) and Health and Care Research Wales (HCRW) (IRAS ref: 292909).

Data analysis

Interviews were performed in English, recorded, and transcribed verbatim. Most interviews lasted approximately 60 minutes, but the duration varied from 30 to 90 minutes. The data were analysed through an iterative process guided by thematic analysis (46). Transcripts were read through in detail by FR, then analysed by assigning descriptive codes. These codes were organised into descriptive themes reflecting pre-defined areas in the research aims and interview guide, and new sub-themes that emerged iteratively through the analytical process. Coded transcripts were then compared, and any discrepancies were resolved through discussion with a senior researcher (TW).

Participant characteristics

12 HAT participants were included in the study, 9 men and 3 women, aged 24–55 (M = 42.6 years). 10 participants were currently engaged in HAT and 2 had ceased treatment, with engagement length ranging from 2 weeks to 2 years, 1 month (M = 12 months). Predominantly gender neutral pseudonyms were adopted to protect the anonymity of female service users.

Three main themes were identified in the data (See Table 1). The first main theme describes how participants overcame barriers to treatment engagement and the second main theme describes participants overcoming barriers to treatment retention. The final main theme describes participant experiences of healing and gradual recovery from drug-related harms. Each main theme consisted of three sub-themes, detailed at the beginning of each main theme (and in Table 1, below).

Insert table 1 here (attached as additional excel file)

Theme 1: Overcoming Barriers To Treatment Engagement

This theme describes how barriers to recruitment onto HAT were overcome from the perspectives of those engaged on the programme. The three sub-themes encapsulate; a lack of awareness about the programme and concerns about treatment longevity; difficulties meeting eligibility criteria and a lack of confidence in treatment, and service user motivation.

Lack of awareness and concerns about treatment longevity

Most participants professed a general lack of awareness about the HAT service prior to recruitment, with one participant stating that knowledge about HAT as an available treatment option was ‘not really out there’ (Brian). However, some HAT service users were existing registered patients of the treatment centre, receiving OST/methadone treatment or general medical care. These individuals had pre-existing knowledge of the clinic and were known to staff, enabling active, face-to-face recruitment by service clinicians.

He called me in the room and he just said, “We’ve just started this thing [HAT].” because even though it was written on the wall like, I didn't know, I'd seen it but I just didn't understand what it was, so he called me in and told me about it and he just said “I think it would really help you out.’’ - Alex

However, HAT is specifically designed for long-term treatment refractory individuals, thus it is likely that many individuals that could benefit from HAT are out of contact with services, (ONS, 2021) preventing active recruitment by clinic staff. For HAT service users not previously engaged with the clinic, knowledge about HAT was shared socially between peers.

I bumped into this lad, one of my old friends who is on this programme as well. [They] said, “I’m on this programme [HAT]. It’ll save you if you want to start.” And that’s why I’m here. – Sam

This illustrates the value of peer outreach in engaging the most marginalised members of the population, who may be disengaged with treatment (47) or lack trust in health care services (48). Distrust and pessimism about government-led health-care initiatives was echoed in participants’ concerns about treatment longevity. Middlesbrough HAT’s funding status has been subject to continuing uncertainty, with past incidences of funding withdrawal (such as the revocation of funding by the Police Crime Commission in 2021, 49) casting a shadow over the treatment’s future.

How long am I going to be funded for? What happens if the funding goes and then I’m left back on the streets? Am probably going to end up back in jail….., my future basically is in the hands of HAT. - Frankie

Frankie expressed anxiety about the social and personal repercussions of treatment cessation, implying a sense of vulnerability in committing to a treatment programme with an uncertain future. Concerns were exacerbated by a previous HAT trial in a nearby town, which participants believed was discontinued without an adequate exit strategy subjecting service users to unpleasant withdrawal symptoms (or ‘rattling’ as it is known by service users).

Because of what happened in [name of nearby town] where the funding got dropped and everyone just got left to rattle- where here I spoke to the staff and the staff said, “We get told six months in advance whether the funding’s going to get dropped so we’ve got six months to reduce you, so don’t ever worry.’’ - Charlie

Participants’ anxieties about treatment funding echo the ethical concerns raised by criticisms of conducting RTCs for injectable opioid treatments (41, 42). Despite concerns being mitigated by pre-emptive communication and reassurance from staff, Middlesbrough HAT participants nonetheless felt vulnerable to bureaucratic decisions made by external policy makers, impacting treatment desirability.

Eligibility criteria and lack of confidence in treatment

Some participants had experienced difficulties and delays in HAT recruitment due to problems meeting eligibility criteria. HAT regulations stipulate participants prove stable on 60mg methadone prior to treatment commencement, presenting a problem for some service users who struggled to engage with standard treatment.

I was out of treatment a lot. So every month I was like out of treatment, twice in a month. So it became a bit of a problem to try and get me enrolled, because I hadn’t filled the criteria properly because of not taking my methadone on time. – Bobby

Treatment refractory individuals who, by definition, struggle to engage with standard treatments may have difficulties fulfilling eligibility criteria, potentially further marginalising the most marginalised treatment-refractory individuals. Other participants suggested that eligibility criteria and monitoring regulations surrounding drug and alcohol use created barriers for individuals who experienced multiple substance dependencies.

There is still a few people out there who I think would need help but they’re dead wary of it. ….. because they’ll have loads of addictions, tablets and something else or crack [cocaine] or they’re heavy drinkers………..I get breathalysed every day, so that’s why people say, I don’t want to bother, because there’s them type of hurdles there to get over. - Ray

Issues with poly-substance use may deter individuals who feel that their ‘hurdles’ are insurmountable, again perhaps pertaining to participants’ status as treatment refractory individuals. Previous experiences of treatment ‘failure’ may have diminished individuals’ confidence in both treatment effectiveness and their own capacity for treatment ‘success’ (50, 51). Some participants’ negative perceptions of OST informed a general treatment scepticism that generalised to HAT. For example, one participant considered OST a constraining treatment option that ‘holds’ service users indeterminately in treatment, echoing previous research in which PWID referred to methadone as ‘liquid handcuffs’ (52).

They offered me this, and I turned it down, just like that…….Because I thought it was going to be like a methadone programme, you get on it and you’ll be on it for years and years and years, you can’t get off it. I thought, there’s no way I can do that. – Billy

Billy reported overcoming this initial reticence through continued staff encouragement, education and persistence. Thus, while past experiences of standard treatment may impact HAT desirability and undermine participants’ confidence in services, staff reassurance and education served to mitigate concerns, promote informed decision making and facilitate engagement.

Service User Motivation

Despite participants’ concerns about engaging with HAT, they commonly expressed a readiness and willingness for novel treatment options, reflecting on past ‘failed’ experiences in treatment.

It's like, you've had methadone in the past, that hasn't worked, you've had 12 step programmes in the past that hasn't worked, you had rehab in the past, that hasn't work, so why not try something that might work isn’t it? – Alex

For Alex, HAT represented a drug-treatment option with the potential to ‘work’, offering new hope and opportunity to achieve treatment-related goals. This illustrates how definitions of treatment success inform service user decision making when engaging with new treatments, and the potential for innovative treatments to re-engage previously disengaged or disillusioned individuals (8, 9). Alex went on to discuss fears for his mortality in relation to street heroin, stating ‘this stuff wants me dead…... It won't stop until I'm dead’. Participants expressed many similar health concerns, particularly regarding the quality and cleanliness of street heroin.

It is really dangerous stuff, and you don’t know what you’re putting into yourself. Once could be alright, the next time you get it on the night it could be off someone else or a different batch or bashed, and that’s what’s the most dangerous thing. You don’t know what you’re getting. And the people there, all they care about is making money. – Jacky

This reflects the inherent danger and unpredictability street heroin, and the vulnerability and risk experienced by people dependent on an illicit and unregulated drug market. Participants’ acute awareness of the risks involved in intravenous street heroin use inspired a strong desire for a viable and effective treatment option.

I was so desperate to get on this course because I wanted to stop, I wanted to get off the merry-go-round……I want to be off everything….I want a clean, healthy life. I want to rebuild the relationships, and enjoy the rest of my life – Bobby

As exemplified by Bobby, participants’ treatment aims generally constituted a combination of harm reductionist and abstinence related goals, including reduced or ceased drug use and improved social functioning and quality of life (53). Many participants expressed a desire to be ‘drug-free and just to be a normal member of society’ (Jessy), indicating a possible internalisation of social norms and expectations surrounding drug treatment success and abstinence-based definitions of recovery. Participants’ motivation and desire for treatment was a key facilitator to engagement, reflected in the strong desire for change and treatment readiness expressed uniformly across the patient cohort.

Theme 2: Overcoming Barriers To Treatment Retention

This theme encapsulates some of the barriers to maintaining treatment engagement experienced by the participants, and how these barriers were overcome to facilitate treatment retention. The three sub-themes describe; difficulties with twice-daily commitment and travel; contact with other people who use drugs and poly-drug use, and de-stigmatisation, medicalisation and supportive staff relationships.

Twice-daily commitment and travel

Some participants experienced hardship due to the intensity of Middlesbrough HAT’s treatment schedule, which involves twice-daily morning and afternoon visits to the clinic for supervised dose injection. This particularly impacted those who relied on public transport to access the service.

I think the most annoying part of it is having to come twice a day and especially from where I live that’s the only thing…….I have to get.….four buses to get here and home and then four buses to get here and home again. So, I think eight buses a day – Jay

HAT’s twice daily treatment schedule demands an enormous daily commitment, with other participants describing HAT as ‘hardcore’ (Ray) and a ‘full-time commitment’ (Jacky). Others described struggling with restricted freedom; ‘you can’t do nothing because you’ve got to come here twice a day, it’s really hard, it’s really difficult’ (Frankie). This supports previous criticisms of HAT as restrictive and constraining, a form of social that dictated participants’ daily movements and activities. (29, 38).

For some participants, time between morning and afternoon doses was too short to allow return travel home. Consequently, participants relied on family and friends for assistance with transport, or filled time between doses with shopping, accessing wrap around support, visiting family or volunteering within the service.

My routine is I get up, I take 1 Zopiclone. I come here, have my HAT, go do whatever I need to go do and then I come back at 2 o’clock, have my HAT and then go home - Frankie

Hence, participants actively engaged in strategies to manage the burden of twice daily supervised injections. Moreover, participants justified the intense daily commitment as ultimately preferable to street heroin acquisition.

I don’t mind because coming twice a day is better than having to do all the stuff I was doing all day. It takes more time to score twice than it would to walk here twice a day I don’t miss begging because I hated that. I don’t miss shoplifting. I don’t miss going on the beat. - Charlie

Charlie, like many other participants, expressed a sense of great relief for HAT offering an alternative to illegal, stigmatised or high-risk daily activities. For some, the imposition of a highly structured daily routine was both daunting and welcome (Jacky) with others describing it as transformative of a previously ‘hectic’ lifestyle (Sam). Transitioning into this new routine was enabled by support and understanding from staff, who allowed flexibility in the treatment schedule for participants in the early days of treatment.

I mean, even if you’re going to be late, you can ring and say, “Look, I’m running late,” and they’ll [staff] still see you. …… As long as you don’t make a habit of it……. If you really are running late, if you’ve slept, or the bus has been late. – Jessy

Thus, while Middlesbrough HAT’s twice daily injecting schedule was restrictive of participants’ freedom of movement, it was preferable to street heroin acquisition, and enabled by staff flexibility.

Contact with other people who use drugs and poly-drug use

Middlesbrough HAT services’ co-location within an existing drug treatment centre presented unwanted encounters with other (non-HAT) drug users, particularly outside the building and in the shared waiting room. This was problematic for some participants in terms of compromised privacy and anonymity (Billy, Jacky) and others due to increased illicit drug use and relapse;

Because I’m on HAT, the downfall was, is I was bumping into people you know because of the place where I’m coming to, so I’m bumping into people and going with them…… I’ve relapsed about three times in the first year…because of the tablets I found myself in a couple of dodgy places. And … I made the mistake of using gear. - Bobby

Contact with other drug users was especially problematic for HAT service users who struggled with multiple dependencies and poly-drug use. Increasingly prevalent in Middlesbrough is the use of ‘street tablets’, illicit versions of prescription drugs such as Benzodiazapine and Zopliclone. Illicit street tablets are unpredictable in quality, strength and effect, and are increasingly implicated in DRDs (3).

It’s like being drunk. But I've seen lads neck about 20 zoppies [zopliclone] and they’re all over the shop and they say, “Ah, these are not working,” another 20. – Stevie

HAT participants are required to abstain from street tablet use due to the increased risk of respiratory problems and overdose when taken alongside diamorphine. Despite the known dangers, a small number of participants admitted to intermittent street tablet use while on HAT, leading to incidences of dose refusal or post-dose sedation. Alex describes his tablet (and alcohol) use during HAT as an exercise in self-medication and escapism during periods of acute emotional distress, indicating a long-standing emotional coping strategy that diamorphine provision alone was unable to mitigate.

I didn't take tablets as a rule because I didn't like them and I didn't drink. But it was just things were getting that bad for me, like I didn't feel like I had anybody anymore, so it was just like I needed to get as much off my head as I could, because I just didn't want to be here. - Alex

This highlights the importance of broad and holistic conceptualisations of substance dependency as multi-faceted and complex, involving long-standing emotional behaviours potentially linked to multiple substances (54). Some participants suggested a more holistic approach within the HAT service would better address issues with multiple dependencies.

I think these should step up……If you’re addicted to something, it’s a place for an addiction, it should be addressed. - Georgie

Another participant suggested that the introduction of an third (evening) HAT dose may reduce illicit self-medication between doses (Georgie). Others suggested that reduced waiting times or separate spaces for HAT participants would increase privacy reduce risks related to unwanted contact with other drug users (Bobby, Billy). Co-location, then, presented some problems for individuals in navigating potentially risky social interactions. Importantly however, benefits to co-location, including increased access to services, partially counteracted this risk, and are discussed in further detail below within the theme of ‘Experiences of healing and ‘recovery’’.

De-stigmatisation, medicalisation and supportive staff relationships

Injecting drugs is a highly stigmatised behaviour (55) that participants described as extremely private, personal and intimate (Jessy, Sam, Jacky). Fear of stigmatisation and judgement was reflected in one participants’ feelings of discomfort and exposure during supervised injecting.

When the girls were sat there watching and I was like, “Look, you’ve got to stop looking at me’’ but they said, “We’ve got to watch you” and I learnt to grow into it anyhow so I learnt to accept it……But it was difficult yes I was like all eyes on me sort of thing……. It’s degrading it’s like a normal person watching you digging heroin you know what I mean? - Georgie

While potential re-stigmatisation during supervised injecting was a concern for several participants early in treatment, they commonly reported rapid transitions beyond feelings of shame or exposure, facilitated by staff’s respectful and considerate approach to supervision.

They’re really nice in there. They let you get on with it. They don’t, they watch you to make sure that you’re not hurting yourself or you’re not going in places that you shouldn’t be…..so they do watch over you but they don’t crowd you or they don’t stand over you a lot or anything. - Jacky

Health-care staff allowed participants adequate space and time to maintain an element of dignity and privacy, even while carefully monitoring injecting practices. Respectful treatment by staff served to destigmatise the injecting experience for participants and mitigate feelings of shame and judgement. This supports recommendations in harm-reduction literature that advocate de-stigmatisation to facilitate feelings of belonging and self-acceptance and promoting engagement in drug treatment (12).

It didn't feel like a dirty seedy little thing hiding away in dirty places no more, it was a very clean thing…..There was a comfort in it like I didn't feel judged.- Alex

The critical role of staff in participant engagement, retention, treatment satisfaction and personal wellbeing was evident across the interview data. For many, the de-stigmatisation extended beyond the treatment room to a more holistic sense of acceptance of the participants as individuals. Participant Sam described being in the treatment clinic; ‘’I felt good. I feel people see me for what I am, and there’s nothing wrong with that.’’ Middlesbrough HAT’s intensive treatment schedule means that participants and staff are in very regular contact, which seemed to facilitate the development of strong and supportive bonds.

I’ve got a good bond with the staff in here and in HAT it’s different, like you get closer with the staff. Like me and [name of staff] go on as if we’re sisters, that’s how close our bond is now I’m on HAT. - Charlie

All participants reported feeling a sense of genuine care, community, and respect within the service, developing a sense of group identity as HAT participants. Staff across the service also took an active role in HAT participants’ treatment outside the treatment room, encouraging contact with other support services such as psychological therapy and social support.

They was constantly in touch ……make sure I was always getting to the appointments all the time and stuff…… They helped me want it. They showed me that I did want it by being the way they were being. – Alex

For HAT participants, staff’s pro-active and de-stigmatising care reduced feelings of shame, encouraged self-acceptance, promoted engagement with HAT and other wrap around services, and inspired motivation for change.

Theme 4: Experiences Of Healing And ‘recovery’

This theme encapsulates the impact of HAT on participants health and wellbeing, describing how different modes of healing and reparation from drug related harms were achieved over time. Three sub-themes describe HAT’s therapeutic impact on criminal activity and physical health, social engagement and relationships, and emotional and psychological wellbeing.

Criminal activity and physical health

Participants who reported having previously engaged in routine criminal activity to pay for street heroin reported significantly decreased or ceased criminal behaviour, reduced jail time and diminished police contact. As Charlie stated ‘’there were about four of us that were prolific shoplifters, offenders in here, and all four of us have stopped’’. This supports international and national data evidencing decreased criminality in HAT service users (35, 40). Thus, HAT engagement can be seen as criminologically rehabilitative, reducing community level social harms related to street heroin acquisition.

Similarly supportive of existing evidence, all participants reported a rapid decrease and subsequent cessation of street heroin use.

I’m just much better now that I’m getting provided with medicine to help me and to help me in a way that I’m not abusing it. I’ve got off the heroin, I’m clean from the heroin, I haven’t touched the heroin, oh god it must be nearly a year now I think. – Ray

Thus, while service users did not necessarily achieve full abstinence-based ‘recovery’ or ‘drug free’ status, participants transitioned from engaging in harmful illicit drug using practices to healing, medicalised practices (39). Risk of injection-related harms such as infections, abscesses and viruses were mitigated by the provision of sterile injecting equipment. Further, the enhanced purity of diamorphine contributed to improved participant health, as street heroin is often mixed with potentially toxic substances in unknown quantities.

I just think this is a really good thing. The stuff that’s out there is shocking….if you miss heroin, what happens is it sits there, and there might be bacteria in it already, and that’s how people end up with abscesses and ulcers and blood clots and stuff, where this diamorphine, it’s clean - Jacky

In addition to the immediate harm-reducing benefits of decreased street heroin use and increased drug purity and cleanliness, many participants described improved engagement with their holistic health needs through accessing routine and regular health care for the first time in many years. Daily attendance at the HAT clinic facilitated access to general healthcare for existing health issues that had previously remained unaddressed.

I had abscesses all over. I’m getting my leg sorted now, so I’m getting proper medical treatment. I didn’t even have time to get medical treatment…….I see the nurse for my leg dressings, because I have a big abscess. So I’ve got that sorted now. - Jessie

Thus, participants experienced healing and reparation of pre-existing drug related harms, a form on non-abstinence based physical recovery. For many participants, engagement in HAT also waylaid fears about serious physical damage, overdose and drug related death. This supports evidence of the harm-reducing potential of supervised drug consumption rooms (11), in which PWID can experienced enhanced safety and protection from DRD and other related harms. As such, HAT was described by service users as health saving and even lifesaving.

I believe that the diamorphine saved me from whatever that heroin was going to do, like there was a big chance that I could have lost limbs, I could have died, I could have gone over. – Alex

The most immediate behavioural and physiological impacts of HAT constituted decreased heroin use, decreased criminal activity, decreased injection-related risk, improved health and access to health care. The health and crime related benefits of HAT have been well documented both locally (35) and internationally (40), and are supported by Middlesbrough HAT service users’ lived experiences.

Social engagement and relationships

Many participants described profound social changes due to HAT, particularly regarding their relationships. Many participants described having engaged in destructive or harmful relationships throughout their lives, either driven or heavily impacted by street heroin use. One participant describes his past relationships and the impact it had on his integrity and self-esteem.

Being around the people like that I was using with …. I didn't like them -not as people, I just didn't like what they were about. I didn't want to be that person no more and I hated myself for it. – Alex

As the need to procure heroin through the illicit drug market was mitigated for HAT service users, they could voluntarily dis-associate from undesirable, unhealthy or harmful relationships linked to drug use. Many participants focused on rebuilding relationships with family, most of which had broken down severely over many years of substance dependency and recurring relapse. One participant describes how the trust in his relationships were slowly rebuilt, with family re-engagement becoming a strong motivator for continued engagement with treatment.

So it took time for them to see that I’d changed, and for that trust to be given back. But once I’d fought for it, and got it back a little bit, it was important. I wouldn’t give it away for nothing you know. My integrity and that trust is important, because I’ve fought so hard to get it back ……..because my relationships are better, the love’s there, the good relationships there you know. - Bobby

In some cases, renewed contact with family was facilitated with assistance from social wrap-around support attached to HAT, accessed within the clinic after treatment. One participant reported re-engagement with children with whom contact has been previously limited or prohibited.

My kids mum, she hates me when I'm using. She's like, we get on really well when I'm not but she was at the point where she didn't want to have me to have nowt to do with my kids, and now she's talking to me every week, she’s letting me seeing them again next week. - Alex

Dissociating from drug using peers and re-connecting with family, loved ones, and children indicates a gradual reversal and reparation of the social harms associated with long-term substance dependence, or a form of ‘social recovery’. For participants with estranged children, the opportunity and capacity to reconnect with their children highlights the potential for effective drug treatments to help address the inter-generational impact of substance dependency (56). Gradual improvements in social functioning represented a return to a ‘normal life’, which gave participants a sense of achievement and increased self-efficacy.

It was all like, so little problems started to get solved in my life you know, like bills. I kind of put some effort and time into them. And I started building, you know, a normal life for myself. Slowly but surely….. I felt successful, I felt like things were changing and I had a chance – Bobby

This quote signifies the importance of conceptualising HAT as long-term health-care provision, particularly for individuals with long established dependency who have repeatedly struggled with standard treatments (41, 42). For many Middlesbrough HAT service users, improvements occurred slowly, with drug consumption, health, and social improvements interacting and building on each other. Several participants expressed general improvements in quality of life, such as secure housing, renewed pleasure in food, shopping and owning furniture, improved self-care and investment in their appearance and presentation, and pride in maintaining independence and paying bills.

I’m just feeling a lot better in myself. I’m not on a see-saw…. achievement you’re proud of it, you’re proud of what you’re doing and that’s why you enjoy it, I enjoy it. I enjoy paying my bills and that, being in control - Stevie

Feelings of pride and success gradually developed both within and outside of treatment, creating a cycle of reparation from drug-related harms across different areas of participants’ social lives.

Emotional and psychological wellbeing

Participants uniformly reported improvements in mental health and self-esteem, even after only a short time in treatment. Several reported histories of suicidality, hopelessness, low self-worth and self-destructive tendencies. For these individuals, HAT represented hope, a reason to develop more positive expectations about the future and exercise self-care.

Confidence has grown. I just feel like I’ve got some get up and go about me now, I didn’t feel like I had before. I feel a lot better about myself. With me doing this HAT, it’s given me……..something to fight for. I want to look after myself more. – Jacky

Furthermore, participants who engaged with wrap-around psychological services that were available within the clinic (pre-Covid) experienced an improved understanding of their past traumas and unhelpful or harmful coping strategies. Service users also received assistance in developing practical strategies in managing behaviours and social risk to decrease the chance of relapse or poly-drug use.

I understood my addiction more. I understood where my problems were coming from. I got help with plans to lower the risk of shit happening …. We made a plan up to go in different directions and making excuses up you know to get out of that situation a lot easier……And helped me get stronger, you know, to say no. Yes, say, “No, I’ve got to go somewhere”. - Bobby

Narratives of renewed hope, fresh starts and revitalisation were common among participants, who described HAT as a ‘shining light’ (Jessy) and an opportunity to ‘write a new story’ (Stevie). Many participants saw HAT as restorative of a more authentic sense of self. This is exemplified by Sam, who stated ‘’I feel like I found myself again. I’m starting to pick the pieces up and put it back together.’’ Participants also expressed increased self-confidence and self-worth, suggesting that HAT fosters an environment in which forms of psychological recovery accompany physical and social reparation. Importantly, most participants reported feeling some sense of liberty, choice and autonomy within their treatment, despite its demands and required commitment.

I do need structure in my life, I really do. But it’s our choice, it’s not so much saying obviously saying, “You will do this”, like you’ve got no choice. This is my choice; I can walk away whenever I want. No one’s telling me, “You have to do this”. This is me, so. - Billy

Overall, participants experienced a range physical, social and emotional improvements, manifesting gradually over the course of treatment. These improvements addressed and even reversed many physical and social harms related to long-term opiate injecting, which increased feelings of hope, self-esteem, and well-being. Collectively, participants expressed personal narratives of recovery from a range of physical, psychological and social drug-related harms, and felt proud and successful within treatment.

Middlesbrough HAT participants reported a range of predominantly positive treatment experiences and impacts. While lack of awareness represented an initial barrier to HAT engagement, this was mitigated through active and persistent face-to-face recruitment and encouragement from staff, and peer communication or ‘word of mouth’. This suggests a need to increase the public profile of HAT through outreach programmes specifically designed to target dis-engaged or marginalised within the community, especially as treatment-refractory long term opioid dependent individuals are likely to be out with of contact services (57). Knowledge sharing may be best facilitated by peers and those with lived experience of drug use to overcome distrust of government or NHS led treatment initiatives (58).

Meeting eligibility criteria presented a barrier for some service users. Specifically, the somewhat counter-intuitive requirement for individuals to prove stable on methadone for a period prior to treatment may further marginalise treatment refractory individuals with negative experiences or preconceptions of drug treatment programmes (52). Similarly, regulatory procedures such as daily breathalysing impacted treatment desirability. Less rigid eligibility criteria and regulatory procedures may improve treatment desirability and better facilitate recruitment of suitable service users. Furthermore, HAT should ideally be conceptualised as an indefinite or permanent treatment option for all service users, as discontinuing treatment may have serious adverse consequences, and concerns over funding discontinuation impact treatment desirability (41, 42).

Participants were ultimately motivated to overcome initial treatment scepticism by a strong desire for change and healing, driven by concerns surrounding worsening physical health and reduced mortality. Only one participant expressed a desire for maintenance on diamorphine, while other participants expressed a mixture of harm-reduction and abstinence focused treatment goals, challenging dyadic conceptualisations of drug treatment outcomes as either maintenance or abstinence based (12, 59). This suggests that HAT represents an attractive and acceptable treatment for individuals who desire change for whom previous drug treatment models had proved unsuccessful, appealing to individuals with a range of treatment goals and aspirations which include but are not limited to abstinence.

Middlesbrough HAT’s twice-daily supervised, on-sight injecting schedule was in ways stabilising and facilitative of enhanced service engagement, but also restricted participants’ daily activities. Hat adherence required participants to sacrifice a degree of agency, autonomy and freedom, potentially limited HAT’s harm-reducing potential as participants were less able to fully and freely engage in the social world (37). Furthermore, the constraining effects of twice-daily clinic appointments may inadvertently ‘push’ patients towards abstinence-focused treatment goals (12) as loner-term goals such as employment, education and holidays are rendered almost impossible while in treatment. This may bound service users’ opportunities and ambitions, and minimise the perceived value of non-abstinence related treatment outcomes. As suggested in previous literature, such stringent legislation may be indicative of institutionalised stigma and state control of a marginalised, criminalised and mistrusted population (37, 38). More flexible delivery methods may enable greater service user freedom, autonomy and social re-integration, while still mitigating engagement with illicit drug markets. For example, take-home doses of diamorphine are legally available within the UK (14) and offered in other HAT programmes internationally. For example, the Swiss HAT programme (25) recently reported increased take-home doses of oral diamorphine during covid, reporting no adverse effects on treatment or security, and increased patient satisfaction and quality of life. Potentially then, more flexible treatment alternatives such as take-home doses, perhaps for afternoon doses once patients are adequately stable in treatment, may decrease the burden of the treatment schedule while maintaining stability and contact with staff.

Like twice-daily injecting, co-location of Middlesbrough HAT within an existing drug clinic presented similarly dichotomous experiences for service users. While co-location improved access to health care and other wrap-around in-clinic services, it also increased the likeliness of unwanted contact with other drug users, encouraging continued illicit behaviour, poly-drug use and relapse (60). This could be mitigated by providing separate entrances or waiting spaces for HAT patients, increasing privacy and decreasing the fear of stigmatisation. De-stigmatisation of participants through respectful staff interactions seemed critical in encouraging treatment retention, supporting the efficacy of de-stigmatising practices in improving patient experiences, retention and outcomes (12).

Participants reported a range of positive behavioural and psycho-social impacts of HAT. Behavioural changes and medicalisation interacted to improve physiological health. Cessation of criminal activity and street heroin use, coupled with diamorphine purity and sterile injecting quickly decreased participants risk and incidence of injection-related harm such as abscesses and overdose. Physical health further improved through increased access to health care services within the clinic, enabling recovery from existing and historic drug-related health problems (Romo). Social re-integration interacted with emotional wellbeing to improve psychological wellbeing. Renewed engagement with family and continued engagement in treatment increased participants’ sense of self-worth, contributing to a gradually increasing improvement of mental wellbeing and a rediscovery of the self. Thus, while most participants had not achieved ‘recovery’ in the tradition sense of complete abstinence from substances, modes of recovery were nonetheless evident in many other respects, physically, socially and psychologically.

HAT participants’ experiences of gradual healing and multi-modal forms of recovery highlight the potential of defining ‘recovery’ in non-abstinence based terms. Broader definitions of recovery that recognise long-term treatment adherence, behaviour change, physical and psychological healing and social re-engagement as meaningful and legitimate forms of recovery offers vastly greater opportunities for experiencing ‘success’ in treatment. For treatment refractory individuals, experiencing success in drug treatment may serve to re-build trust in government services, build self-esteem and self-efficacy, and promote retention and confidence in their ability to achieve treatment related and personal goals. Equally, defining ‘recovery’ as a fixed ‘end-goal’ of total abstinence may discourage individuals whose complex, long-established dependencies require time to address. In non-abstinent recovery, abstinence can remain a treatment goal for service users without representing a barrier to experiencing success. In this respect, recovery can be conceptualised as a spectrum, upon which sits abstinence alongside many other forms of social, physical, psychological and emotional healing.

Limitations

This research contains the perspectives and lived experiences of ten current HAT service users, one patient who had completed treatment (to attend rehab) and one who had withdrawn. Of the active HAT service users, four had been in treatment for less than a month. While this was helpful in understanding the motivators, recruitment facilitators and early experiences of HAT service users, experiences of long-term benefits were garnered from a relatively small cohort of six service users. Furthermore, the research team experienced difficulty in recruiting individuals who were offered but had refused HAT, therefore this research only reports barriers to recruitment that were ultimately overcome, thus the voices of individuals with stronger objections to engaging with HAT are not included. This is an area for future research, and we suggest that an outreach approach in the community may better facilitate participant recruitment and data collection. Similarly, only one participant had withdrawn (unplanned) from treatment, while several other individuals had engaged and disengaged with Middlesbrough HAT since its conception. Hence, this research provides only a limited view of challenges with treatment retention. Again, future research may address this limitation. Finally, interviews all took place on site within a private room in the clinic immediately post-dose. While participants were reassured of confidentiality and the impartiality of the researchers, interviewing within the service may have influenced participants to report an excessively positive perspective of the programme. Perspectives of individuals who have refused or discontinued treatment may serve to provide a more balanced view of the service.

This research aimed to explore the treatment experiences of service users engaged in Heroin Assisted Treatment (HAT) in Middlesbrough. Participants overcame barriers to engagement and retention through self-motivation and commitment, supportive staff relationships and experiences within treatment that denoted success and improved self-efficacy. They experienced multi-faceted physical, emotional and social impacts, including minimised street heroin use and criminal behaviour, improved physical health and increased social engagement and emotional wellbeing. HAT is an example of treatment that offers opportunities for success within a broad definition of recovery, in which abstinence sits on a spectrum with many other forms of social, physical and psychological recovery from drug-related harms. Thus, HAT is an effective harm reduction model in which physical, social and emotional harm reparation interact over the course of treatment, and service users’ increased self-efficacy encouraged continued engagement and holistic healing.

DRD- Drug related death

HAT – Heroin Assisted Treatment

MMT – Methadone maintenance therapy

OST – Opioid substitution therapy

Ethics approval and consent to participate

Ethical approval was obtained from the HRA and HCRW (IRAS ref: 292909) also stated in the methods section. Participants signed a written informed consent to participate in the study.

Consent for publication

Consent to publish was collected from the participants as part of the informed consent procedure.

Availability of data and materials

The interview transcripts generated during the interviews in this study are not publicly available to preserve the confidentiality of the participants.

Competing interests

Danny Ahmed works as clinical lead for Foundations Medical Practice which delivers HAT in Middlesbrough. Danny Ahmed was not part in the development of interview schedules, data collection or analysis but contributed to reviewing final manuscript for context. DA was interviewed as part of the research to gather his perspectives as a practitioner by an external member of the research team so not to introduce bias during the interview process. This interview does not form part of the data used within the analysis presented in this paper.

Funding

Funding for this research and Open Access publishing was provided by the National Institute for Health and Care Research (NIHR) [Applied Research Collaboration North East and North Cumbria (NIHR200173)].

Authors’ contributions

Riley, Fleur: Data Collection, Project Administration, Formal Analysis, Investigation, Writing- Original draft preparation, Writing -Original Draft, Writing- review & editing

Harris, Magdalena: Conceptualisation, Funding acquisition, Methodology, Investigation, Writing- review & editing

Ahmed, Danny: Conceptualization, Funding acquisition, Writing- review & editing

Moore, Helen: Conceptualization, Funding acquisition, Project Administration, Methodology, Ethical approval, Writing- review & editing

Poulter, Hannah: Conceptualization, Funding acquisition, Data collection, Methodology, Project Administration, Writing- review & editing

Towl, Graham: Conceptualisation, Funding acquisition, Writing – reviewing & editing

Walker, Tammi: Conceptualization, Funding acquisition, Ethical approval, Methodology, Data collection, Project Administration, Formal Analysis, Investigation, Writing- Original draft preparation, Writing -Original Draft, Writing- review & editing, Supervision

Acknowledgements

We wish to acknowledge the participants who shared their stories and knowledge. We also wish to acknowledge the staff at the Middlesborough HAT centre and others who contributed to making this study possible.

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Table 1 is available in the Supplementary Files section

No competing interests reported.

FRHATpaperTable1.xlsx

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You are reading this latest preprint version

‘I feel like I found myself again’ – Rethinking ‘recovery’ in a qualitative exploration of Heroin Assisted Treatment (HAT) service users’ experiences

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Journal Publication

Version 1

Abstract

Background

Drug Treatment In The Uk

Heroin Assisted Treatment: International Evidence

Heroin Assisted Treatment In The Uk

Heroin Assisted Treatment – Service Users’ Perspectives

Methods

Study setting

Data collection

Data analysis

Participant characteristics

Findings

Theme 1: Overcoming Barriers To Treatment Engagement

Lack of awareness and concerns about treatment longevity

Eligibility criteria and lack of confidence in treatment

Service User Motivation

Theme 2: Overcoming Barriers To Treatment Retention

Twice-daily commitment and travel

Contact with other people who use drugs and poly-drug use

De-stigmatisation, medicalisation and supportive staff relationships

Theme 4: Experiences Of Healing And ‘recovery’

Criminal activity and physical health

Social engagement and relationships

Emotional and psychological wellbeing

Discussion

Limitations

Conclusion

Abbreviations

Declarations

References

Table

Additional Declarations

Supplementary Files

Status:

Journal Publication

Version 1