Coronavirus (COVID-19) opioid substitution treatment in prisons - evaluation: patient experience follow-up report

2. Buvidal patient experience

2.1 Overview

The interviews with Buvidal patients and healthcare staff provided in-depth, qualitative perspectives about the impact of changing their OST to Buvidal, which for most patients was from methadone to Buvidal. High levels of satisfaction were reported by almost all patients. From analysis of the interview transcripts, several themes were identified. These included 1) motivations for changing to Buvidal; 2) benefits patients experienced from changing to Buvidal; 3) concerns and drawbacks as a result of switching to Buvidal; 4) implications of Buvidal for throughcare; and 5) the future of Buvidal.

2.2 Motivations for switching to Buvidal

Most patients had been motivated to switch to Buvidal because they did not like how methadone made them feel and because they felt there was a stigma associated with it. Most patients described how they felt sluggish and emotionally closed off when taking methadone. One likened being on methadone to living like a 'zombie'. Several patients were also keen to shed the stigma they experienced as methadone patients, which was partly associated with having to stand in a queue in prison every day to receive their prescription. Whilst exploring OST patients' views about methadone was not an objective of this research, the views of Buvidal patients suggest that methadone has a poor reputation among some OST patients. An example of this was given by the one patient who started taking Buvidal but had not previously been prescribed methadone. They described how they had been using opioids illicitly in prison but resisted attempts by healthcare staff to prescribe them methadone. Such was their strength of feeling about not wanting methadone, they described how they would 'rather die than take it'.

Other motivations given by patients for switching to Buvidal were tied to life outside of prison. In this group, most patients referred to how taking Buvidal would mean that they would no longer have to attend a community pharmacy every day to receive their prescription. For some patients, this was framed as addressing a barrier to employment. However, for many interviewees, attending a pharmacy everyday was a situation where they felt at risk of relapsing into drug use. Patients described how community pharmacies were settings that brought them into contact with peers that they shared a drug taking past with or people who tried to sell them drugs. Other motivations given by several patients relating life outside of prison were that they wanted to take Buvidal as they thought it would improve relationships with their families and children – for example, one female patient hoped that Buvidal could help them regain custody of their child after they were released because they felt it would give them more stability in the community. The emphasis that some patients placed on Buvidal helping them live what they saw to be an 'ordinary lifestyle' after their release from prison suggests that they saw Buvidal as an enabling treatment.

Healthcare staff described observing broadly similar motivations among patients wanting to switch to Buvidal. However, staff also perceived several additional motivating factors. Some staff members reported that patients wanted to start taking Buvidal because they had observed positive changes in others. As one staff member described it, the 'good word' about Buvidal was spreading in prison. Several staff noted that the influence of peers could be especially powerful in prompting people to switch to Buvidal. They described how some patients on their caseloads who had been prescribed methadone for a long time, in some cases over 20 years, and had previously shown little interest in reducing their dose or trying to come off OST, had requested to change to Buvidal.

Healthcare staff also described motivations related to bullying and diversion. For example, several described how they were aware of some patients who had wanted to switch to Buvidal because of the pressure they were under to divert their methadone. However, it was also noted that patients were typically unwilling to disclose that they were being bullied. An example of the harmful effects that bullying to divert their OST can have on patients was given by one healthcare worker. They described how a patient had been caught attempting to divert their methadone prescription and wanted to switch to Buvidal but did not have enough time left in custody to change over. The staff member explained how this patient told them that they were being threatened on a daily basis to divert their medication and that they would be violently assaulted if they refused. This example illustrates the high stakes and danger that people in prison can face if being pressured to divert their OST. An inference from this example is that widening uptake of Buvidal could improve OST patient safety in prisons, given healthcare staff thought it would likely be impossible to divert Buvidal. A broader population safety benefit from Buvidal could also be that if diversion is prevented then there is not a controlled drug in circulation which could cause harm to others.

Healthcare staff noted that OST patients currently prescribed daily buprenorphine tablets typically did not want to change to Buvidal, despite it being the same drug in a different format, and a small number who had changed to Buvidal subsequently reverted to buprenorphine tablets. A conclusion drawn by healthcare staff was that people on daily buprenorphine tablets were involved in diverting their prescription, either due to bullying or seeking to sell it illicitly. A final observation regarding motivations relates to trends in the uptake of Buvidal. Several healthcare staff described how there had been a steady upwards trend of people deciding to switch to Buvidal once it had been introduced. However, they noted that, when the future of funding of Buvidal became less clear (i.e. prior to the Scottish Government announcement that support would be extended until the end of the 20/21 financial year), fewer people were switching to Buvidal because of uncertainty about whether they would be able to stay on it. This indicates that patients were more willing to switch to Buvidal when there was greater certainty about its future.

2.3 Benefits to patients switching OST to Buvidal

Patients described several benefits they had experienced since starting Buvidal. These included reduced cravings and usage of illicit substances, improved health, and wellbeing, and, in some cases, better relationships with families and friends in the community.

2.3.1 Addiction benefits

From an addiction perspective, most patients described how they found themselves thinking less about drugs and experienced fewer cravings. None reported using illicitly. Several patients described how drug seeking behaviour had previously dictated the pattern of their daily living – sourcing drugs was the first thing on their minds when they woke up and several described how they would seek to source other drugs illicitly inside prison after they received their methadone prescription. Most patients perceived Buvidal as a more enabling treatment than methadone, seeing Buvidal as a path to a better future and possible abstention from drugs. Healthcare staff reported a decline in illicit substance use by Buvidal patients. In those prisons that carried out drug screening on Buvidal patients, only one instance of a Buvidal patient having taken something illicitly was recorded. Healthcare staff noted that Buvidal patients exhibited fewer instances of drug seeking behaviour. For example, several described how methadone patients would regularly seek top-up doses or other forms of medication for minor ailments; one described methadone patients as 'always wanting a wee bit more'. Whereas now these behaviours had largely ceased in patients taking Buvidal.

2.3.2 Health and wellbeing benefits

From a health and wellbeing perspective, patients described feeling more 'normal' and able to experience emotions since taking Buvidal. One gave an example where they found themselves becoming emotional while watching the TV, which was something that did not happen while they were taking methadone, and they perceived this change positively. This and other examples showed that Buvidal patients were more emotionally present in their lives. While this was described as a positive for most patients in this study, interviews with healthcare staff showed that the increased emotional clarity could be a drawback for others, particularly those coping with past trauma. Patients described feeling brighter, having more energy, and feeling cognitively sharper. There was a sense here that a veil had been lifted from their lives by coming off methadone. Patients spoke about how they were able to perform better at work, were taking fewer sick days, and had more energy and motivation for other activities, including going to the gym and learning the guitar. No longer being bullied for their prescription was a benefit to their lives that was only mentioned by one patient but was hailed as a positive more commonly by healthcare staff. The patient who spoke about the pressure they experienced to divert their OST prescription described diversion as a 'major thing' in the prison they were living in and that switching to Buvidal could make patients' lives safer. Healthcare staff also noted that Buvidal had made a positive impact on patients' health and wellbeing. Several described the differences they had seen in Buvidal patients was 'remarkable' and that Buvidal as a 'game changer'. Staff described how Buvidal patients appeared healthier, happier, could think more clearly, and were feeling more optimistic about their future. Patients experiencing heightened clarity was thought to be particularly impactful. One staff member described how a patient said to them that taking Buvidal was "like looking at life with different eyes". One interviewee gave examples where they were supporting Buvidal patients who had been on methadone for up to 20 years and now they had a 'spring in their step'. As they describe more fully:

They [Buvidal patients] look fantastic. It's like a different person… guys that have been on methadone for years, you never thought that you would have seen them in a gym. You can see them in the morning with a towel under their arms heading for the gym. On Buvidal they are starting to see a future for themselves, they are starting to see a distance from other drug users that they haven't seen before. It's changing people's lives in a way that people have never seen before.

2.3.3 Family and relationship benefits

Patients were asked if switching to Buvidal had impacted on their relationships with other people in their lives, including family and friends in the community or those they were living alongside in prison. Of those patients who were in contact with people in the community, most felt that Buvidal had a positive impact on their relationships. Several patients described how their families were pleased they had stopped taking methadone and, like the patients themselves, had negative perceptions about methadone, whereas Buvidal was viewed more positively. Patients described how their families were less worried about them and were proud of them for starting Buvidal. When asked why this was, patients described how their families had a poor opinion of methadone and did not think it was helping them with their addiction. Several patients spoke about how they felt more communicative when interacting with their families and that they could connect more clearly with them. Examples of this included talking longer on the phone and starting to write letters. One patient described how the tone and content of the conversations they were having with people in the community had become more positive – to illustrate this, they described how they were no longer frequently asking family and friends to put money in their prison account, which they would then spend on illicit drugs.

A healthcare interviewee gave an example of the positive impact on patients' family relationships from switching to Buvidal. They described how two Buvidal patients were set to leave custody and return to living with their families as a result of starting Buvidal. They reflected that returning to live with their families would likely not have happened if these patients were still being prescribed methadone because they had previously been unable to stabilise themselves in the community. However, not all patients reported changes in relationships with people in the community and one described that any positive change to their relationship would likely only be seen over time, due to their relationships being strained by their history of offending and drug use.

2.4 Concerns and drawbacks about switching to Buvidal

Whilst patient experience of Buvidal was almost entirely positive, some concerns and drawbacks were raised. Most of the patients interviewed and all healthcare staff described how the transition from methadone to Buvidal could be challenging, particularly if this process involved patients having to reduce their dosage of methadone beforehand. Most patients described symptoms of opiate withdrawal during the changeover to varying degrees and most reported being anxious about experiencing withdrawal before they started Buvidal. Patients said they felt well supported by healthcare staff if they struggled with the transition. The most common responses to patients experiencing withdrawal were either for them to receive a top-up injection of Buvidal or have their dosage increased. However, several staff mentioned that in some cases they felt that Buvidal patients were asking for top-up injections because of the drug-seeking behaviour that is prevalent among the OST client group and that if further medication were available to OST patients, they would likely request it, irrespective of clinical need. Almost all of the patients interviewed who experienced withdrawal symptoms noted that these abated after they received a top-up injection or had their dosage increased. And they reported feeling stable on Buvidal by the time they were into the second month. There was one exception among the patients interviewed in this study who struggled with the transition to the point where they decided to revert back to their methadone prescription, despite having received top-up injections and their Buvidal dosage increased to the maximum available.

Other side effects reported included headaches, hot flushes, and some difficulty sleeping. The experiences of Buvidal patients in this study suggests that some discomfort is to be expected during transition, particularity where people have previously been prescribed a high dose of methadone. These kinds of reactions are not unexpected, as experiencing withdrawal is part of the changeover process to Buvidal for methadone patients, who are required to reduce their dose down to a maximum of 30ml per day and then go one day without methadone before starting Buvidal. Encouragingly, though, these experiences were mostly not severe enough that patients decided to revert to methadone.

Healthcare staff cited several concerns raised by patients prior to starting Buvidal. Most noted that patients had worries about the changeover process, particularly about whether they would experience withdrawal. Other concerns included the newness of the treatment and about how Buvidal worked, with patients voicing concerns that it would 'run out' and they would start to experience withdrawal. Staff described how this apprehension led to some patients becoming anxious in the days before their next injection was due. Staff also described how some patients were uneasy about the new sense of clarity they would experience when taking Buvidal, particularly if their drug use were related to a suppressing/coping strategy for past traumas. Staff described that this was a factor considered in early discussions with prospective Buvidal patients and could lead to some patients being advised not to change to Buvidal until their mental health was more stable. In some cases, healthcare staff described how patients' concerns about the changeover period were based on how they had seen others struggle. In response, however, staff noted that patients were reassured by seeing that most patients did become stable on Buvidal. Added to which, healthcare staff were now more knowledgeable about the difficulties people could face and were better able to support them and make the transition smoother. Other patient concerns reported by healthcare staff included the continuity of their prescription and whether they would be able to access Buvidal once they left prison. From a mental health perspective, staff noted that some patients struggled with the clarity that Buvidal provides, to varying degrees. Mostly this was the result of people having to cope with past traumas that they were now more aware of. The effects of these varied, but in one case, the effect was particularly severe, and the patient attempted suicide.

2.5 Patient satisfaction

Patients were asked whether Buvidal had met their expectations, if they had any, and whether they were satisfied with Buvidal. While most patients did not have a concrete sense of what starting Buvidal would mean for them, and in some cases, they thought it would be 'just another drug' or 'like methadone', most described how Buvidal had exceeded any expectations they had. A common theme was that patients had not expected such positive changes to how they felt. Consequently, almost all of them described feeling very satisfied with Buvidal. As evidence of their satisfaction, several described how they had been encouraging other OST patients in prison to change. Allied to this, several spoke about how they felt that being able to share their experiences would help others to make the decision to change.

2.6 Buvidal and throughcare

As noted above, several patients cited anticipated changes to their lives after leaving prison as a reason to change to Buvidal. These included not having to attend a chemist daily, regaining custody of their children, and being more able to look for or hold down employment. Healthcare staff were also asked to reflect on the implications of Buvidal for patients once they returned to the community. Their main observation was that accessing Buvidal in the community was now easier than it had been when it was first offered to OST patients in prison. According to several healthcare staff, when Buvidal was first prescribed to OST patients in prison there had been some initial uncertainty about whether they would be able to continue to receive their prescription in the community. In some instances this had led to some patients having to transfer back to methadone because Buvidal was not available in their home Health Board. This was felt to be a negative outcome for the patients affected. However, several healthcare staff described how firmer links were now in place with community prescribers and Buvidal patients could now continue to receive their prescription after their release.

Implications of Buvidal for the transition from custody to community were viewed by all healthcare interviewees as positive. Several described how being on Buvidal had alleviated some of the anxiety experienced during their release, as patients often had a list of things to arrange and, in many cases, these would have to wait until their methadone prescription had been arranged. One healthcare interviewee described how methadone patients could become panicky about release and this could lead to them delaying other commitments until they had their prescription arranged. One staff member described how Buvidal would lessen the challenges associated with release on a Friday, when there is heightened pressure to have arrangements in place ahead of services being closed or only offering limited support over the weekend. Like most patients, healthcare staff also saw benefits to not having to attend a chemist on a daily basis as it would keep them away from a 'scene' that could trigger relapse into using illicitly.

2.6.1 The future of Buvidal as an OST in Scotland's prisons

The final question to healthcare staff was whether they were aware of, or had any plans for, the future of Buvidal once Scottish Government support ends at the conclusion of the 20/21 financial year. From a patient perspective, several healthcare staff were in the process of establishing Buvidal peer groups so that patients could share their experiences. Given the success attributed to word of mouth as a way of promoting Buvidal among OST patients, this was felt to be an important step. Regarding the future of Buvidal, staff were mostly uncertain about what was happening with funding in the longer term. Several described how they had been told not to commence any new Buvidal patients after the end of 2020 and, while funding would remain in place for those patients to be maintained on their prescription, there had been no announcements about whether their health board would resume offering Buvidal to new patients in the new financial year. Whilst several staff highlighted that Buvidal could demonstrate cost savings across a host of areas, they felt that the higher cost of Buvidal per dose compared to methadone would likely be a factor in determining whether Health Boards decided to fund the treatment. Staff opinions on the uncertain future of Buvidal as an OST for people in prison reflected a mixture of resignation and frustration. Several questioned the ethics of offering one form of treatment to some OST patients while denying it to others. As one observed, 'If it was to come to an end due to funding, I think it would be a sad thing'.