The committee's discussion
- Section 1.1 First contact with services
- Section 1.2 Referral to secondary care mental health services
- Section 1.3 The care plan: multi-agency approach to address physical health, social care, housing or support needs
- Section 1.4 Partnership working between specialist services, health, social care and support services and commissioners
- Section 1.5 Improving service delivery
- Section 1.6 Maintaining contact between services and people with coexisting severe mental illness and substance misuse who use them
- Other points the committee discussed
- Evidence reviews
- Gaps in the evidence
Evidence statement numbers are given in square brackets. For an explanation of the evidence statement numbering, see the evidence reviews section.
The discussion below explains how we made recommendations 1.1.1 to 1.1.6.
Committee members were aware from their experience that people with coexisting severe mental illness and substance misuse may present in crisis (for example, at A&E). But they may be also be found opportunistically in other settings (for example, homeless shelters) and identified as needing immediate assistance with a range of needs. This includes their mental or physical health, substance misuse or social care needs.
They noted that the physical health and social care needs of this group are often overlooked because of the challenging nature of dealing with both mental health and substance misuse issues. They also noted that this group is often excluded from services because no one wants to take responsibility for them and they need help to access a wide range of services.
In addition, members noted that a policy guide in 2002 (Department of Health's Dual diagnosis good practice guide) has advised that care for people with coexisting severe mental illness and substance misuse should be delivered within mental health services.
The committee noted from the evidence and members' experience that people with coexisting severe mental illness and substance misuse are a vulnerable group, who often have poor physical health, are unemployed, homeless or are at risk of other people taking advantage of them. The latter includes being subjected to sexual exploitation or being taken advantage of in relation to their housing or financial situation.
It noted there was strong evidence from a meta-analysis of 3 cohort and case–control UK studies (2 high quality [++] and 1 low quality [−]) that people with coexisting severe mental illness and substance misuse (compared with those with severe mental illness only) were more likely to have a history of homelessness or housing problems. There was also evidence from 1 high-quality UK case–control study that this group of people are more likely to live in the most deprived areas. There was moderate evidence from 3 high-quality UK cohort studies that showed a greater number of people with coexisting severe mental illness and substance misuse are unemployed than those with severe mental illness only [ES1.1.9].
The committee noted that a meta-analysis of 2 UK case–control studies (1 high and 1 moderate quality [+]) showed no difference in social functioning between this group and people with a severe mental illness only. However, 1 high-quality UK cohort study showed poorer social functioning in people with coexisting severe mental illness and substance misuse than in those with substance misuse [ES1.1.9].
The committee also noted that this evidence was mainly from people in contact with secondary care mental health services and may not reflect the needs of the wider population of people with coexisting severe mental illness and substance misuse [ES1.1.9].
The committee noted inconsistent evidence for educational outcomes [ES1.1.9]. But members also noted from their experience that the point at which a person is diagnosed would have an effect on their educational attainment.
The committee was aware, from the evidence and its experience, that this group is often stigmatised by staff or because of the type of services they are using. For example, this may be a negative attitude towards substance misuse within mental health settings or vice versa. This is based on evidence from 7 qualitative studies (2 high, 3 moderate and 2 low quality) reporting on barriers related to stigma and attitudes towards this group [ES2.1.3].
Six qualitative studies showed that people with coexisting severe mental illness and substance misuse face a number of barriers or facilitators when accessing social care services, particularly housing support. Of the 4 studies that identified barriers to accessing housing support, 1 high-quality qualitative study reported that people with coexisting severe mental illness and substance misuse often feel there is a social stigma associated with seeking help [ES2.2.1]. Also, services are often not easy to access.
The committee felt that it is important for all services to address these issues from an inequalities perspective and to prevent further deterioration in the person's mental and physical health, social care and substance misuse needs. It was also aware from 7 qualitative studies (2 high, 3 moderate and 2 low quality) reporting on fragmented care, that a consequence of fragmented care is a negative impact on a person's experience of care and willingness to engage with services [ES2.2.4].
So it made a strong recommendation that all staff coming into contact with this group should be able to understand their needs and help them access services.
Committee members were aware from their practice and the evidence from 1 high-, 3 moderate- and 2 low-quality qualitative studies (3 set in the UK) that mental health and substance misuse services often fail to take responsibility for people with coexisting severe mental illness and substance misuse [ES2.1.10].
The committee also noted the evidence from 1 low-quality UK qualitative study that highlighted commissioners' views that the health and wellbeing of this group need to be addressed [ES2.1.2]. The committee noted that wherever people with coexisting severe mental illness and substance misuse present, a similar approach to helping them access care is needed.
The committee advised that secondary care mental health services need to be the lead organisation responsible for delivery of services and therefore made a recommendation to refer people with coexisting severe mental illness and substance misuse to secondary care mental health services.
The committee heard from an expert about the physical health issues that can affect people with coexisting severe mental illness and substance misuse [EP4]. It noted that although the expertise was from a perspective of primary care services for homeless people, the range of health needs identified could be transferable to the wider population of people with coexisting severe mental illness and substance misuse. So the committee made a weak recommendation on the range of physical health conditions (for example, cardiovascular, cancer or communicable diseases) that staff need to be aware of. However, it noted that this is not an exhaustive list.
It also reflected on the lack of evidence on the prevalence of coexisting physical health problems [ES1.1.8] and agreed further research is needed (see research recommendation 1).
The committee noted that because of the complexity of their needs, people with coexisting severe mental illness and substance misuse are at increased risk of poor self-care, losing contact with family and friends, social isolation or living in poor housing or having their homes abused by others as venues for substance misuse or drug dealing.
Based on moderate to strong evidence from 4 cohort and 6 case–control studies, committee members were aware of the range of social care needs of people with coexisting severe mental illness and substance misuse in the UK [ES1.1.9]. They were also aware from expert testimony [EP2], and their own experience of working with this group, of the detrimental effects that unmet needs (such as social isolation or poor housing) can have on a person's health and recovery, which could lead to relapse [ES2.2.1, EP2]. This was based on 2 high-quality and 1 moderate-quality qualitative studies reporting on barriers when seeking housing support.
The committee was aware that these unmet needs may lead to physical health problems, offending behaviour or disengagement from services. It was also aware that a person may have issues with both poor housing and physical health and that this may not always be a 'cause–effect' relationship.
Committee members agreed that recommendation 1.1.1 is for staff working in all general services. But they also noted that it would be applicable to other services, such as criminal justice system and urgent care.
Committee members were aware that the criminal justice system was not included in the scope and that the evidence reviews did not specifically search for studies on the transition between criminal justice systems and healthcare services. They were also aware that NICE is developing guidance on the mental health of adults in contact with the criminal justice system. However, they felt it was important to include because it is a potential route for people with coexisting severe mental illness and substance misuse to come into contact with healthcare services. This was also reflected in the expert testimony on primary care services for homeless people [EP4].
The committee was aware from its experience of the importance of highlighting safeguarding issues for this vulnerable population. It felt that this point needs to be for general services. The committee acknowledged that safeguarding has been made a statutory duty under the Care Act 2014. It was also aware of statutory safeguarding arrangements specific to children (see the Department of Education's guidance on working together to safeguard children) and statutory guidance to the 1989 and 2004 Children Acts (see Ofsted's report What about the children? ). The committee was also aware of the safeguarding needs of dependents and carers.
The discussion below explains how we made recommendation 1.2.1.
The committee was advised by the topic experts that secondary care mental health services are usually the lead agency that supports people with coexisting severe mental illness and substance misuse.
Although this guideline focuses on people with diagnosed coexisting severe mental illness and substance misuse, the committee felt it was important to address the general issue of ensuring people are properly assessed so they can be offered an effective care plan.
The committee noted from 1 moderate-quality study, 1 low-quality UK study and members' experience that timely assessments can help people to access services and stay involved with their care plan [ES2.1.1].
The committee agreed with the recommendations on the principles of recognition and assessment in NICE's guideline on coexisting severe mental illness (psychosis) and substance misuse: assessment and management in healthcare settings, even though it has a narrower focus than this guideline. The committee also agreed that the recommendations on identification and diagnosis were useful (identification and diagnosis was outside the scope of this guideline). Although the psychosis with substance misuse guideline was specific to psychosis and not the range of severe mental illnesses covered in this guideline, members agreed it would be useful for readers to refer to both recommendations.
The committee agreed to develop a recommendation on what needs to happen once a person is referred to and accepted into secondary care mental health services based on the evidence, expert testimony and members' own experience.
The committee agreed that substance misuse should not be a reason to exclude people from secondary care mental health services. Based on the evidence and from members' experience this is a common problem [EP2]. The committee also noted from members' experience that the person's wider needs are often not recognised, or they are not given a routine assessment of their mental health or substance misuse needs to develop a care plan.
From their experience, committee members were aware of the importance of a person-centred approach. This was reinforced by review 2. The committee was also aware of NICE's guidelines on coexisting severe mental illness (psychosis) and substance misuse: assessment and management in healthcare settings and service user experience in adult mental health. Both outline the need for a non‑judgemental and empathetic approach built on trust and respect. The committee felt it was important to take a person-centred approach when developing and reviewing the care plan and made a strong recommendation on involving people in their care planning. This was based on evidence from:
5 qualitative studies (2 high, 2 moderate and 1 low quality) reporting on facilitators related to the relationship between people who use services and practitioners. 1 of these studies was conducted in the UK [ES2.1.4]
7 qualitative studies, of these 2 qualitative studies (1 moderate and 1 low quality) reporting on benefits of consistent care. 1 of the studies reporting on facilitators was conducted in the UK [ES2.2.4]
8 qualitative studies (2 high, 3 moderate and 3 low quality) reporting on barriers and facilitators to engagement with healthcare and support services. 3 of these studies were conducted in the UK [ES2.2.7].
The discussion below explains how we made recommendations 1.2.2 and 1.2.3.
The committee agreed that secondary care mental health services take the lead in coordinating services and developing a care plan. The committee noted that care planning is usually led by a care coordinator because this is part of the Department of Health's Care Programme Approach.
The committee was aware of the importance of continuing care. It was also aware that the continuity provided by a key contact encourages people to keep in touch with services (evidence review 2). This was based on the evidence from:
5 qualitative studies (1 moderate- and 4 low-quality) reporting on barriers or facilitators associated with organisation and continuity of care, 3 based in the UK [ES2.1.11]
7 qualitative studies (2 high, 3 moderate and 2 low quality) reporting on barriers or facilitators associated with the impact of fragment care provision on continuity of care [ES2.2.4].
Based on their expertise and the responsibilities outlined in the Care Programme Approach, committee members made a strong recommendation that a care coordinator from community mental health services is assigned once a person has been referred to secondary care mental health services.
They agreed that the care coordinator should take the lead in developing and reviewing the care plan and should take responsibility for organising delivery of a range of services, with the support of a wider team.
Committee members advised that the role of care coordinator already exists within secondary care mental health services. They noted that care coordinators are part of a multidisciplinary team. But they also noted that overall responsibility (for example, for discharging a person) would lie with a consultant psychiatrist.
The discussion below explains how we made recommendations 1.2.4 to 1.2.6.
The committee agreed that it is important to take a person-centred approach, by focusing on actions that are agreed with the person and by offering, not imposing, services on them. So it developed a set of recommendations on 'involving people' in care planning. These recommendations are deliberately separate from the recommendations on the actual content of the care plan (section 1.3 on the care plan: multi-agency approach to address physical health, social care, housing and other support needs).
The committee took into account qualitative evidence from 3 studies reporting on the barriers or facilitators that face people with severe mental illness and substance misuse face when trying to make decisions about their care [ES2.2.9]:
1 low-quality UK study about encouraging the person to be involved in their care plan decisions
2 moderate-quality qualitative studies about respecting their preferences.
It felt that these factors can help a person adhere to their care plan.
The committee was also aware from the evidence (5 qualitative studies: 2 high quality, 2 moderate quality and 1 low quality) and their experience that a good relationship between the health or social care professional and the person with coexisting severe mental illness and substance misuse is key to effective delivery of health and social care services [ES2.1.4]. Members noted that a good relationship can affect a person's willingness to engage with and respond to care, and can also affect their recovery.
Bearing in mind all these factors, it made a strong recommendation on the need to take them all into account when developing a care plan.
The committee noted from members' experience that providers need to understand what is having an effect on the person each time they see them, so that they can provide the right level of support, including information, each time. It noted that the frequency of contact can vary depending on the person's circumstances. It also noted the importance of sharing the care plan between services.
The committee noted that people can recover. But it also noted that for this group of people, 'recovery' may not necessarily only be about reducing their substance use but about leading a productive life. The members felt that although recovery may take time, providers need to always convey a sense of optimism whenever possible.
The committee was aware that changing behaviour may be a lengthy process and that NICE's guideline on behaviour change: individual approaches may provide useful strategies on personalising messages.
The discussion below explains how we made recommendations 1.2.7 and 1.2.8.
The committee was aware of current legislation that entitled carers to an assessment of their needs (Care Act 2014).
The committee was aware from the evidence and members' experience, that a carers assessment may be particularly important if the carers are children [ES2.1.9; 1 UK study of low quality]. Members' experience highlighted that a point of contention for carers is that they may not be privy to the person's plans and wishes. Evidence from 2 qualitative studies (1 moderate quality and 1 UK study of low quality) highlighted the barriers faced by families and carers in relation to receiving support for themselves [ES2.2.10]. So the committee developed a recommendation based on the evidence, expert testimony and their expert knowledge to highlight young people and adult carers' needs and ways to support them [review 2, EP2].
The committee was aware, from its own experience, that carers may not be offered the opportunity to decline caring responsibilities that are beyond their capacity when they are being assessed. That is why it is important to highlight that carers may be entitled to further support, even though this is specified in the Care Act.
The discussion below explains how we made recommendations 1.5.6 to 1.5.9.
The committee was aware of moderate evidence from 13 UK studies (2 high, 9 moderate and 2 low quality) that there were inconsistencies in the current configuration of 'dual diagnosis' services in NHS trusts across the UK [ES1.2.1]. These inconsistencies lie in several areas, including sources of funding, structure of services, type of staff members, services delivered and coordination of care. The committee considered the evidence on configuration of services and observed there were few specialist services for adults [ES1.2.1].
The committee agreed that the recommendations for specialist services (secondary care mental health services and 'dual diagnosis' services) need to focus on improving existing services using the expertise that is available instead of creating a specialist 'dual diagnosis' service. It felt that the standard care delivered in the UK could be improved by increasing the level of engagement people with severe mental illness and substance misuse have with existing services and that existing capacity and resources could be used to deliver this.
The committee made recommendations about the design, delivery and content of the service model, based on the evidence, economic model, expert testimony and members' expertise.
The committee considered the evidence for the effectiveness and efficiency of service delivery models, which included randomised controlled trials (RCTs) and observational studies [ES3.1, ES3.2, ES3.3, ES3.4, ES3.5, ES3.6, ES3.7, ES3.8, ES3.9, ES3.10]. The evidence covered a range of service delivery interventions, showing some positive outcomes and that there was value in what the models were aiming to achieve. However, the members agreed that there was no overwhelming evidence of benefit to indicate a particular model should be recommended.
The committee agreed that there was limited evidence of effect for assertive community treatment and integrated treatment interventions in relation to mental health and substance misuse outcomes [ES3.1, ES3.2, ES3.3]. The committee noted that fidelity to delivery of interventions (whether the intervention was delivered as designed) in the service models was reported for only 5 studies. Where reported, the fidelity was considered to be good.
There was weak evidence for assertive community treatment based on 5 US RCTs [ES3.1]. The committee noted that the assertive community treatment intervention model is no longer used in the US and is rare in the UK. There was moderate evidence from 6 RCTs and 1 observational study (3 studies based in the UK) for integrated treatment interventions compared with treatment as usual [ES3.2]. There was weak evidence from 1 RCT for integrated treatment intervention compared with enhanced assessment and monitoring. The RCTs did not all show a clear evidence of benefit [ES3.3].
There was some improvement in service use outcomes (increase in physical and telephone contact) but members noted that it was debatable whether this was necessarily an evidence of benefit, because the reasons for contacts were not reported [ES3.1]. There was some evidence of effect on social care outcomes such as housing, employment and social functioning [ES3.1].
The committee felt that although the follow-up in the studies ranged from 24 weeks to 3 years, the length of time needed to observe small improvements can sometimes be 5 to 10 years [ES3.1, ES3.2].
There was moderate to weak evidence from 8 RCTs and 1 non-randomised controlled trial evaluating a range of interventions. The intervention included:
brokerage case management [ES3.4]
contingency management [ES3.5]
time-limited care coordination [ES3.6]
shelter-based psychiatric clinic [ES3.7]
staff training [ES3.8]
supportive housing [ES3.9]
supportive text messaging. [ES3.10]
The comparator arms were no intervention, treatment as usual or an active comparator.
The committee noted that there was mainly weak evidence from small studies, with short follow-up (ranging from 16 to 78 weeks). Three studies were based in UK and Ireland but most of the evidence was from US. It noted that fidelity to delivery of the intervention was reported in only 2 studies (1 reported as low and 1 as high fidelity). Members discussed the potential value of service models incorporating contingency management, peer support (delivered as part of a care coordination intervention in 1 US study) or text messaging, and considered these further under research recommendations [ES3.5, ES3.6, ES3.10] (see research recommendation 2).
The committee agreed that there was weak evidence for a staff training intervention considered in the review of effectiveness of service delivery models [ES3.8]. It noted that the 2 UK studies were of low quality, the evidence was inconsistent and did not appear to show an overall benefit. In addition, a committee member reflected on their own involvement in delivery of the intervention in 1 of the studies. The committee member noted that there were a number of challenges: staff often moved between services, there was a high turnover of staff, and low fidelity to delivery of the intervention.
The committee agreed not make a recommendation on training because the evidence did not show an overall benefit.
The committee agreed there were several gaps in the evidence from review 3 including:
population (limited evidence on young people and vulnerable groups)
interventions or measures – for example, measures looking at improving accessibility and availability of services
outcomes (no evidence on physical health outcomes)
efficiency of service delivery models – for example outcomes on accessibility of services (waiting times).
The committee was aware of evidence from 4 qualitative studies (1 moderate- and 3 low-quality studies) of barriers or facilitators associated with integrated services. One low-quality UK study, for example, described mixed views among staff in a specialist 'dual diagnosis' service on whether services should be separate or integrated with mental health or substance misuse services [ES2.1.13]. It noted that there was evidence from the same study indicating that most commissioners felt that integrating services is essential for the effective and efficient delivery of care for people with complex needs. Some commissioners also noted that relationships between different services could be expected to improve if they were required to share budgets and resources.
Committee members felt this finding (published in 2006) should be treated with caution because the funding landscape has changed considerably since 2002. Based on their experience they noted that:
a third tier of provision may not necessarily meet the needs of people with coexisting severe mental illness and substance misuse, and
'integration' in this context should be about joint working and coordinated care rather than developing a specialist service.
The committee noted that there was limited description of the comparator arms (often described as 'treatment as usual') in the studies included in review 3 and that most of the studies were conducted in the US. The committee's view was that 'usual care' in the US is likely to differ from that in the UK and the level of 'usual care' in the UK was considered to be of a better standard.
The committee used members' expert knowledge and the evidence to develop a recommendation on aspects that could be included in a service. This includes interventions that have shown to be effective in NICE guidelines for either severe mental illness or substance misuse. The committee was aware of the study by Wenze (2015) (Adjunctive psychosocial intervention following Hospital discharge for Patients with bipolar disorder and comorbid substance use: a pilot randomized controlled trial) included in the economic model. It reflected on the components of the 'treatment–engagement' sessions in the Wenze (2015) study as well as members' own experience to develop a recommendation on ways to improve engagement.
The committee noted that any recommendation on improving service delivery needs to take into account the needs of those who reach crisis and those who experience a relapse after discharge. This recommendation was based on members' expertise. Members were aware from the evidence and their experience that people's care is often fragmented and that plans need to be in place to allow people to return for additional support after being discharged or losing touch with the system. They noted the evidence on facilitators for consistent care, including from 1 low-quality UK study that highlighted that good aftercare is an important means of preventing relapse [ES2.2.4]. They also noted that the Department of Health's Mental Health Crisis Care Concordat has information on developing an action plan for people in a crisis.
The discussion below explains how we made recommendations 1.5.10 to 1.5.12.
It is good practice for care coordinators working with people with severe mental illness who misuse substances to be offered support and supervision in secondary care mental health services. But practice may vary.
The committee noted the importance of support and supervision from their experience and the evidence from 2 high-, 1 moderate- and 2 low-quality qualitative studies (3 set in the UK) [ES2.1.15]. Because of the complexity of the care coordinator's role, the committee felt it was important to highlight in the recommendation the importance of a support structure for this role.
Committee members were also aware from the evidence that lack of training may act as a barrier to the effective delivery of care [ES2.1.16]. This was based on 10 qualitative studies (2 high, 3 moderate and 5 low quality), with 5 studies set in the UK. They also noted from the evidence and their experience that addressing gaps in practitioners' knowledge on substance misuse and mental health can encourage them to establish links with other services and help improve delivery of services.
Evidence from 1 high-, 3 moderate-, and 1 low-quality qualitative studies (2 set in the UK) found that staff having different perceptions of people with drug and alcohol problems, depending on the focus of the service they work in, is a barrier to service delivery and partnerships. This view was consistent among providers and commissioners across various settings [ES2.1.14].
Providers' views across 6 qualitative studies highlighted services not taking responsibility for people with coexisting severe mental illness and substance misuse, and the potential impact of this on meeting people's wider health, social care or support needs [ES2.1.10]. Three of the studies were set in the UK, 1 was of moderate quality and 2 were low quality. The committee noted that although 1 of the UK studies was of low quality it was recent and reflected voluntary sector providers' views. Members drew on the evidence and their own expertise and noted that helping overcome negative attitudes in staff will help make sure people with coexisting severe mental illness and substance misuse are not excluded from services.
Committee members were aware from the evidence from 5 qualitative studies (2 high-, 2 moderate- and 1 low-quality studies) of the importance of establishing good relationships between practitioners and people with coexisting severe mental illness and substance misuse and its impact on delivery of care [ES2.1.4]. They also noted there was high-quality UK evidence from 1 study to show that practitioners perceived that behaviours such as misusing drugs could affect relationships and act as a barrier to delivering care [ES2.1.4].
Based on the evidence and their experience, the committee made a strong recommendation on the need to build services that are tolerant and resilient. It agreed that services need to be able to help people work through relapse, poor attendance or a crisis to ensure they are not discharged too soon.
The committee heard from an expert on a service delivery model in early intervention services [EP3]. It noted that these services offer a more consistent and coordinated approach. That is because the staff working in them have lower caseloads, so can have more contact with the people they work with and provide stability. The committee noted a similar approach needs to be considered for staff who work with people with severe mental illness and substance misuse.
Taking into account the evidence, members' experience and expert testimony, the committee made strong recommendations on providing the right kind of support for staff.
The committee discussed the evidence from the cost effectiveness studies and the economic model when developing the recommendations on improving service delivery.
An economic analysis was undertaken. This comprised a review of existing cost effectiveness studies and a bespoke economic model.
The findings from the review of evidence (from 1 UK and 7 US studies) were inconsistent [ES4.1, ES4.2, ES4.3, ES4.4, ES4.5]. The US studies found that integrated treatment leads to minor cost savings but the UK study found that the intervention resulted in an increase in public sector costs.
In all studies, integrated treatment appears to result in improvement in some outcomes. But economic analyses used different outcome measures, reported as changes on various scales, making comparisons challenging. Three studies adopted before-and-after design, studies used different perspectives and time horizons, only 1 included economic study was judged to be directly applicable, 3 studies were judged to be characterised by minor limitations [++], 4 by potentially serious limitations [+], and 1 by very serious limitations [−]. Overall, there is little evidence to support one service delivery model over another, based on existing economic evidence.
The model was based on 3 studies. The first study, conducted in the US, comprised a treatment–engagement intervention (using resources more intensively than in standard care) for people with bipolar disorder and substance misuse. It was a small study whose health outcome was inconclusive, but yielded resource use data. The remaining 2 studies, both from the UK, were used to estimate baseline admissions rates for people with dual diagnosis.
The model's time-horizon was 1 year only. So increases in life expectancy that might have occurred as a result of an intervention were not included as benefits in the model. Because of the lack of data a further conservative assumption was that wider costs, particularly those falling on the criminal justice system, were not included. Further, the model's measured outcome might not have measured all of the health outcome benefits.
The model showed that an intervention that combined enhanced engagement with standard care would need to reduce relapses by about 12% for the intervention to become cost saving.
The committee members had differing views about whether UK standard care is better than that reported in the US studies. It was felt that standard care in the UK may be more similar to the enhanced intervention modelled.
Assuming standard care in the UK is equivalent to the enhanced intervention modelled, it would be offering better outcomes at the same cost. By definition, that would be a cost effective approach. However, assuming standard care in the UK would need to be enhanced and therefore need additional resources, at a cost of £226 per person and assuming an effect size of 10% the intervention would need to result in a small quality-adjusted life year (QALY) gain of 0.002 (equivalent to 0.73 days in full health) to be considered cost effective at an incremental cost effectiveness ratio threshold of £20,000 per QALY [ES4.6].
Given the results that were obtained even though a number of potential benefits were not considered because of the lack of data (for example on a person's life expectancy, improvement in the substance misuse problem, improvement in the mental health of service users the reduction in health and social care and the criminal justice system costs) the treatment–engagement intervention is very likely to be a cost effective option.
Section 1.6 Maintaining contact between services and people with coexisting severe mental illness and substance misuse who use them
The discussion below outlines how we made recommendations 1.6.1 to 1.6.5.
Committee members decided to make recommendations on encouraging people to stay in contact with services and making services accessible. That is because they were aware, from the evidence and their own experience, that this group may find it hard to start or maintain contact with services [evidence review 2, EP2]. Also, their physical health, social care, housing or support needs are not being met.
The committee noted from its experience that it is important to take a long-term, realistic view in relation to involving the person in their care plan and coordinating their care. It noted from experience and evidence (previously noted in the discussion for section 1.3) that this is particularly true in light of the challenging nature of working with this group [ES2.1.8].
Committee members were aware – from the evidence, expert testimony and their own experience – of the importance of providing continuity and adopting a flexible approach. The committee heard from experts working with people who are homeless about a range of methods that could be used to engage and stay in touch with this group [EP2]. The committee also considered evidence from 4 qualitative studies (1 high, 1 moderate, 2 low quality), of which 2 were UK studies [ES2.2.4]. This highlighted that a lack of continuity of care, along with changes in staff, can result in a lack of trust or reluctance to engage with services. It also highlighted that good aftercare was an important aspect of preventing relapse.
Committee members reflected on their experience and the evidence from 8 qualitative studies of mixed quality (2 high, 3 moderate and 3 low). Three of the studies (low quality) were set in the UK. The studies showed that a non-judgemental empathetic approach was needed when encouraging a person to stay in contact [ES2.2.7].
The committee noted barriers to access or uptake of social care or physical health services as highlighted in review 2 [ES2.1.3, ES2.2.1, ES2.2.2, ES2.2.4, ES2.2.5, ES2.1.12]. These included:
lack of support during a transition period (for those who had criminal convictions)
failure to recognise cultural differences
mistrust of healthcare professionals
poor links to services
negative connotations of being labelled as having problems with both mental health and substance misuse
stereotyping or stigma about mental health diagnoses in substance misuse settings or about substance misuse in mental health settings.
The committee was aware from evidence review 2 and members' experience that having continuity of contact encourages people to keep in touch with services. The committee made a weak recommendation on a range of approaches based on members' experience and expert testimony [EP2, EP4].
The committee recognised that everyone with coexisting severe mental illness and substance misuse faces difficulties in receiving care, but it wanted to highlight that some groups are particularly vulnerable. It acknowledged that factors contributing to this include not being able get to, or stay in contact with, the services they need [ES2.1.10].
The committee noted moderate to strong evidence from 11 cohort studies and 7 case–control studies on the characteristics of the coexisting severe mental illness and substance misuse population [ES1.1.5]. It noted that it is more common in younger people and men [ES1.1.5]. It also noted that homelessness is a frequent outcome for this group [ES1.1.9]. Members also acknowledged that pregnant women or women who have recently given birth are particularly vulnerable. This was based on their experience and evidence review 2. The committee noted from its experience that people with coexisting severe mental illness and substance misuse frequently have a history of trauma and that this can lead to disruptive attachments and challenging behaviour. It also noted that, from a 'life course' perspective, older people may be a particularly vulnerable group.
The committee noted that the evidence linking ethnicity with coexisting severe mental illness and substance misuse was inconsistent [ES1.1.5]. Apart from age, gender and ethnicity, there was a lack of evidence to show that groups identified in the equality impact assessment are more likely to have a coexisting severe mental illness and substance misuse. This includes, for example: people with a learning disability; teenage parents; Gypsies and Travellers; asylum seekers or refugees; lesbian, gay, bisexual, transsexual or transgender people; and sex workers [ES1.1.5].
The committee was aware from its experience that everyone has a range of social care needs, but noted that the evidence did not identify particular social care needs for groups identified in the equality impact assessment. That includes, for example, those who are socially isolated, on low income, have a history of being 'looked after' or are adopted or have a history of experiencing or witnessing domestic violence and abuse [ES1.1.9].
Although no evidence was identified, the committee was aware from its experience that some groups may be reluctant to engage with, or may encounter difficulties when engaging with, services for people with coexisting severe mental illness and substance misuse. This includes people who are recent migrants, have language difficulties or are from specific religious communities. From an equality perspective, committee members recommended including people with language difficulties.
Although it is not an exhaustive list, the committee highlighted the groups identified in recommendation 1.6.4 based on the evidence, their expertise and expert testimony [ES1.1.5, ES1.1.9, review 2, EP2].
The committee noted that, although the evidence from review 2 provided insight into barriers and facilitators to delivery of care, it agreed that research was needed to understand the experience of people at different stages of recovery (see research recommendation 4).
Committee members were aware, from the evidence and their experience, that lack of emotional support and empathy can be a contributing factor to non-attendance at appointments or loss of contact [ES2.2.7]. They were also aware that non-attendance can often lead to discharge [review 2]. Based on the evidence, their expertise and expert testimony, they made a strong recommendation on actions services can take to ensure that non-attendance or loss of contact is treated as a matter of concern [review 2, EP2].
Committee members reflected on their experience and expert testimony and noted the importance of maintaining contact and reaching out to people to help them remain engaged with services [EP2]. Based on their experience, they made a weak recommendation on the follow-up actions to address non-attendance.
The committee discussed the exclusion criteria in the scope and noted that exclusion of mental health disorders such as eating disorders was a major gap.
The committee noted that criminal justice system settings were excluded from the scope, but was aware of NICE guidelines currently in development on the mental health of adults in contact with criminal justice system and the physical health of people in prison. It also recognised that young people and adults with coexisting severe mental illness and substance misuse who need a safe place to stay may come into contact with people within this setting, for example, the police. The committee noted that resources for helping the police to support people with vulnerabilities are available in the Home Office's Crisis Care Concordat.
The committee considered a range of expertise that would be helpful to inform the development of the guideline and invited expert testimony in early intervention services, primary care, homeless, and local partnership working. The committee also acknowledged other groups (refugees, veterans) but recognised that there is a general set of needs that would subsume the specific needs of particular populations.
The committee considered all the evidence available in developing this guideline. However some evidence statements provided background information and could not be explicitly linked to recommendations [ES1.1.1, ES1.1.3, ES1.1.4, ES1.1.6, ES1.1.7]. The committee heard from an expert in early intervention services who described a study on contingency management (see the CIRCLE study) that provided background information and was not linked to a specific recommendation [EP5].
The committee discussed the various forms of support groups or mechanisms for peer support. It was aware of mutual aid organisations including Alcoholics Anonymous (AA), Narcotics Anonymous (NA), Dual Recovery Anonymous (DRA) and SMART recovery and discussed the merit of adding a reference to such forms of support as examples in the guideline recommendations.
It was also aware of Public Health England's briefing on the evidence-based drug and alcohol treatment guidance recommendations on mutual aid but noted it was not aware of evidence establishing use of mutual aid in people with coexisting severe mental illness and substance misuse. In addition, because peer support and mutual aid were areas identified for a research recommendation, the committee did not recommend specifying examples of mutual aid groups in the guideline recommendations.
The committee also noted that there is a stigma attached to the term substance 'misuse' but recognised that this term is used in other NICE guidelines.
Details of the evidence discussed are in evidence reviews, reports and papers from experts in the area.
Studies reported in evidence review 1 were all based in the UK. For evidence statements derived from evidence reviews 2, 3 and 4 we have noted the number of studies based in the UK in the committee's discussion section. Please refer to the full evidence statements in the evidence reviews on the applicability of the evidence base to the UK.
The evidence statements are short summaries of evidence. Each statement has a short code indicating which document the evidence has come from.
Evidence statement (ES) number 1.1.1 indicates that the linked statement is numbered 1 in review question 1.1 of review 1. ES1.2.1 indicates that the linked statement is numbered 1 in review question 1.2 of review 1. ES2.1.1 indicates that the linked statement is numbered 1 in review question 2.1 of review 2. ES3.1 indicates the linked statement is numbered 1 in review 3 and ES4.1 indicates the linked statement is numbered 1 in review 4. EP1 indicates that expert paper 1: 'Local partnership working: examples drawn from the work of the Making Every Adult Matter coalition' is linked to a recommendation. EP2 indicates that expert paper 2: 'St Mungo's: people who have a dual diagnosis and are homeless' is linked. EP3 indicates that expert paper 3: 'Early Intervention in psychosis services' is linked. EP4 indicates that expert paper 4: 'Dual diagnosis among homeless people: primary care perspective' is linked.
If a recommendation is not directly taken from the evidence statements, but is inferred from the evidence, this is indicated by IDE (inference derived from the evidence).
Section 1.1: ES1.1.8, ES1.1.9, ES2.1.2, ES2.1.3, ES2.1.10, ES2.2.1, ES2.2.4; EP2, EP4; IDE
Section 1.2: ES2.1.1, ES2.1.4, ES2.1.9, ES2.1.11, ES2.2.4, ES2.2.7, ES2.2.9, ES2.2.10; EP2; IDE
Section 1.3: ES1.1.8, ES1.1.9, ES2.1.7, ES2.1.8, ES2.2.1, ES2.2.2, ES2.2.3, ES2.2.4, ES2.2.6; EP1, EP2, EP3, EP4; IDE
Section 1.4: ES2.1.5, ES2.1.6, ES2.1.7, ES2.1.10, ES2.1.11, ES2.2.3, ES2.2.4, ES2.2.8, ES2.2.10; EP1, EP2; IDE
Section 1.5: ES1.1.2, ES1.2.1, ES2.1.3, ES2.1.4, ES2.1.10, ES2.1.12, ES2.1.13, ES2.1.14, ES2.1.15, ES2.1.16, ES2.2.4, ES2.2.5, ES2.2.9, ES2.2.10, ES3.1, ES3.2, ES3.3, ES3.4, ES3.5, ES3.6, ES3.7, ES3.8, ES3.9. ES3.10, ES4.1, ES4.2. ES4.3, ES4.4,ES4.5, ES4.6; EP1, EP2, EP3; IDE
Section 1.6: ES1.1.5, ES1.1.9, ES2.1.3, ES2.1.8, ES2.1.10, ES2.1.12, ES2.2.1, ES2.2.2, ES2.2.4, ES2.2.5, ES2.2.7; EP2, EP4; IDE
The committee's assessment of the evidence on coexisting severe mental illness and substance misuse identified a number of gaps. These gaps are set out below.
1. Evidence on the characteristics of people with coexisting severe mental illness and substance misuse in the groups identified in the equity impact assessment. This includes: people with a learning disability; teenage parents; Gypsies and Travellers; asylum seekers or refugees; lesbian, gay, bisexual, transsexual or transgender people; and sex workers.
(Source review 1)
2. Social care needs of people identified in the equity impact assessment. This includes those who are socially isolated, are on a low income, have a history of being 'looked after' or are adopted, or have a history of experiencing or witnessing domestic violence and abuse.
(Source review 1)
3. Views and experiences of:
b) primary care practitioners who work with vulnerable groups
c) groups identified in the equity impact assessment (with the exception of young people and ex-offenders).
(Source review 2)
4. Interventions or measures assessing efficiency of services (for example, measures looking at improving accessibility and availability of services).
(Source review 3)
5. Different models of service delivery (for example, a comparison of specialist, integrated or separate services) and efficiency of service delivery models.
(Source review 3)