Health Technology Assessment (Oct 2024)
Care models for coexisting serious mental health and alcohol/drug conditions: the RECO realist evidence synthesis and case study evaluation
Abstract
Background People with severe mental illness who experience co-occurring substance use experience poor outcome including suicide, violence, relapses and use of crisis services. They struggle to access care and treatment due to a lack of an integrated and co-ordinated approach which means that some people can fall between services. Despite these concerns, there is limited evidence as to what works for this population. Objectives To undertake a realist evaluation of service models in order to identify and refine programme theories of what works under what contexts for this population. Design Realist synthesis and evaluation using published literature and case study data. Setting Mental health, substance use and related services that had some form of service provision in six locations in the United Kingdom (five in England and one in Northern Ireland). Participants People with lived experience of severe mental illness and co-occurring substance use, carers and staff who work in the specialist roles as well as staff in mental health and substance use services. Results Eleven initial programme theories were generated by the evidence synthesis and in conjunction with stakeholders. These theories were refined through focus groups and interviews with 58 staff, 25 service users and 12 carers across the 6 case study areas. We identified three forms of service provision (network, consultancy and lead and link worker); however, all offered broadly similar interventions. Evidence was identified to support most of the 11 programme theories. Theories clustered around effective leadership, workforce development and collaborative integrated care pathways. Outcomes that are meaningful for service users and staff were identified, including the importance of engagement. Limitations The requirement for online data collection (due to the COVID-19 pandemic) worked well for staff data but worked less well for service users and carers. Consequently, this may have reduced the involvement of those without access to information technology equipment. Conclusion The realist evaluation co-occurring study provides details on how and in what circumstances integrated care can work better for people with co-occurring severe mental health and alcohol/drug conditions. This requires joined-up policy at government level and local integration of services. We have also identified the value of expert clinicians who can support the workforce in sustaining this programme of work. People with co-occurring severe mental health and alcohol/drug conditions have complex and multifaceted needs which require a comprehensive and long-term integrated approach. The shift to integrated health and social care is promising but will require local support (local expert leaders, network opportunities and clarity of roles). Future work Further work should evaluate the effectiveness and cost-effectiveness of service models for this group. Study registration This study is registered as PROSPERO CRD42020168667. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: NIHR128128) and is published in full in Health Technology Assessment; Vol. 28, No. 67. See the NIHR Funding and Awards website for further award information. Plain language summary People who experience serious mental illness (the kind that affects people’s daily life and needs long-term support) can also have problems with drugs and alcohol. This can affect access to care and treatment and result in a crisis. We wanted to develop a better understanding of how services could help those with co-occurring serious mental health and alcohol/drug conditions (or COSMHAD for short). To answer these questions, we carried out the following: We gathered information from publications to identify what treatments are available for co-occurring severe mental health and alcohol/drug conditions and which aspects of these were useful (evidence synthesis). We asked services across the United Kingdom about the local provision for people with co-occurring severe mental health and alcohol/drug conditions. We conducted focus groups in six locations with service users, carers and staff about their experiences of care for co-occurring severe mental health and alcohol/drug conditions. What we found There are very few services in the United Kingdom that currently provide a service for people with co-occurring severe mental health and alcohol/drug conditions. We identified a set of factors that are likely to promote better outcomes for people with co-occurring severe mental health and alcohol/drug conditions including commitment from leaders across organisations to address this issue and support staff training. A local expert clinical leader was seen to be important in enabling closer working between mental health and substance use. Service users and carers recognised that when care was co-ordinated, and staff demonstrated empathy and compassion, they were more likely to engage in treatment. Further work will be needed to evaluate how helpful some of the aspects of the models of care are in helping people in their recovery goals. Scientific summary Background Approximately 30–50% of people with serious mental health illness (SMI) have a coexisting alcohol/drug condition, leading to significant negative health and social outcomes. Despite the scale of these co-occurring conditions, there is limited evidence to inform treatment, with the evidence that is available failing to provide a definitive answer as to how services and treatments should be best delivered to improve health and other outcomes for this diverse group. Objectives The aim of this project was to use a realist approach to understand what works, how, for whom and in what circumstances by synthesising data from published and grey literature, mapping and describing the characteristics of UK services and service provision, and undertaking in-depth focus groups and interviews in locations picked to be representative of the range of provision identified in the mapping and review of the literature. The outcome was a set of refined programme theories (PTs), which underpin an explanatory framework that can be used to inform future research, policy and practice. Methods We conducted a series of distinct, yet interrelated work packages (WPs) to achieve our research objectives. Work package 1: development of programme theories The aim of WP1 was to (1) map the literature to provide a systematic overview of the nature of the published and grey literature on types of service provision for people with co-occurring severe mental health and alcohol/drug conditions (COSMHAD) and (2) develop realist PTs for interventions and service models for COSMHAD. An a priori protocol was registered with PROSPERO. In phase 1, in consultation with stakeholders (including clinical experts in COSMHAD and those with lived experience), we elicited a set of initial PTs in a workshop and analysed policy documents and articles describing COSHMAD services in practice in the UK. In phase 2, we followed the five stages for realist synthesis. A total of 172 papers were included in the synthesis. Work package 2: service mapping Work package 2a: mapping of United Kingdom co-occurring severe mental health and alcohol/drug conditions services The aim of WP2 was to gather information on the availability of COSMHAD treatment across the UK. To achieve this, information was gathered by direct requests to relevant health and social care organisations, either as speculative e-mails or as Freedom of Information requests. In addition, internet searches for relevant services were also conducted. The initial information requests were sent by e-mail in March 2020 and had to be halted due to the start of the coronavirus disease 2019 (COVID-19) pandemic. A second wave of requests was sent in October 2020 to organisations that had not responded. The information requested included the details of the approach/treatment pathway for COSMHAD that each organisation commissioned/provided, and whether treatment was commissioned/provided specifically for COSMHAD, knowledge of any other COSMHAD service being provided in the same location, and name and contact details of the organisation’s COSMHAD lead (if there was one). Work package 2b: service audit/survey Using the information gathered during the national mapping, 16 organisations were identified as providing COSMHAD services. This was on the basis that their response indicated that there was some form of dedicated resource (typically in the form of specifically funded staff roles) to deliver the COSMHAD model. The 16 services were asked to provide more detail using an online audit form. This included items on the approach to treatment, the range of treatments offered, staff training/supervision, commissioning and funding of COSMHAD services, and health economic data. This survey was sent to a key member of staff in each of the organisations to complete, with the option of a follow-up telephone call to aid response rates. The data were used to identify models of service delivery. Work package 3: refining programme theories The purpose of WP3 was to test and refine the PTs developed in WP1 in real-world settings. Six case study sites were selected that represented examples from the three types of service models identified in WP2. Staff were recruited and consented to participate in online focus groups. Service users and carers were approached by clinical staff in the service to inform them of the study and to pass on contact details to the realist evaluation co-occurring (RECO) researcher. The RECO researcher would then contact and discuss the project, and if they were interested, they would give informed consent. Service users and carers participated in online focus groups and individual interviews. One carer focus group was face to face. Topic guides were developed from the 11 PTs that were developed in the realist synthesis, and all the interviews and focus groups were conducted using realist interviewing style. All interviews were recorded using Microsoft Teams and the auto-transcription facility. The transcripts were anonymised and analysed in NVivo. Results Work package 1: realist synthesis A set of 11 refined PTs were identified from the literature and these broadly fell into three interconnecting categories: committed leadership; clear expectations regarding COSMHAD from mental health and substance use workforces; and clear processes to co-ordinate care. Work package 2: service mapping The initial mapping identified that most areas of the UK offer some form of integrated care or treatment pathway for people with COSMHAD. However, only 16 services indicated that they offered more than an agreed pathway and offered something more tangible. The information provided from the audit of the services was used to broadly divide into three main models of delivery: Network – this is a broad collection of staff from a range of local services that share agreed care pathways and come together for network meetings and shared training. Consultancy – a specialist team that provides consultancy to the mainstream mental health services, including joint assessment, advice on care planning and clinical management and continuous professional development (CPD) training. Lead and link – this model is led by a clinical expert leader (often a consultant nurse or equivalent) with ‘link workers’ or ‘champions’ based across the mental health service to support this role. However, there was significant variation in the level of investment in terms of dedicated staff. Six sites were selected to be case studies. Work package 3: case studies A total of 58 staff, 25 service users and 12 carers participated in the focus groups and interviews. Data were obtained that supported 10 out of 11 PTs. There were limited data regarding pre-registration/undergraduate training (despite prompts) because the participants had no connection to the curriculum development and delivery for nursing, allied health, social care or medical training. Some of the PTs had more supporting evidence than others. The main findings were that positive attitudes including empathy and compassion were seen as a critical context for engaging people in services. Positive attitudes were influenced by access to CPD training, and also ongoing support and supervision in practice. It was important that people could see that the clinical skills taught in CPD worked effectively in practice. This was also promoted by working alongside (shadowing) a clinical expert in COSMHAD. The role of a clinical expert (most commonly a consultant nurse in COSMHAD) was rated highly by the staff for a number of reasons, including keeping COSMHAD on the agenda both clinically and strategically; having an oversight of the whole care pathway; and fostering relationships between key agencies (such as substance use, housing, etc.). The expert lead also offered a training and supervision programme within the organisation, and in some cases facilitated local special interest networks which included peer support, sharing expertise across disciplines, and building interagency and interdisciplinary relationships. The quality of these inter-agency relationships was seen to be critical for integrating care for COSMHAD. Clear and collaborative care pathways that were needs led, person-centred and holistic were important. The service users and carers reported that fragmented local services were really difficult to navigate, and therefore service users often ended up falling through the gaps, increasing the need for crisis care including the police, ambulance service and emergency rooms, none of which is satisfactory in helping people to move forward with their recovery. For effective integrated care to occur, there was a clear need for organisational commitment to this agenda at a senior strategic level (including local commissioning) as well as commitment in operational managers. This commitment ensures investment in posts (such as the expert leaders); protected time for staff to access training, supervision and network meetings; and mandating standards of care for people with COSMHAD. In addition, there needs to be a commitment to recruiting and retaining the workforce that have the requisite knowledge, skills and values. This also links to the need to ensure that pre-registration education for nurses and allied health professionals as well as psychiatry and psychology includes content in working with COSMHAD, as well as offering placements where health and social care students get positive experience of assessing and planning care for people with COSMHAD. Carers felt that they carried a lot of the burden of caring for their loved one, and often felt excluded from the care team. They found that peer support was very helpful, but they too would benefit from more clarity in the care pathways and consistency of approach. Discussion Despite over two decades of attention and policy guidance to improve responses to people with COSMHAD, the mapping revealed a lack of investment in specific roles to support care pathways, workforce development and quality of care. Most of the services we identified had been in existence in some form or another for many years and were driven by enthusiastic champions with fragile funding, and often limited strategic or organisational support. Models of care were generally based on an expert lead role plus link workers (dedicated roles) or local champions (not dedicated roles, but supplemental to their role) to support the work within the service as well as co-ordinating services across several agencies. In addition to leadership and supporting care pathways, all of the case studies offered in-house training and consultation. One of the case studies involved a dedicated team of clinicians who offered consultation and training only, as opposed to carrying out any direct clinical work. One model operated as a network of link workers but was missing the strategic lead as that post had not been filled following the departure of the previous lead. The RECO study has been able to identify the important contexts under which integrated care can be provided (mechanism) which produces positive outcomes for service users (and their carers). It is clear that COSMHAD needs to be prioritised as a service development issue and this requires drivers from national and local policy-makers and commissioners. NHS mental health providers should be the main provider with key responsibilities for people with serious and enduring mental health problems irrespective of other comorbidities (in this case alcohol and or drugs). Staff in mental health services should have a minimum level of knowledge and skills regarding the interface between mental health and substance use. Training alone, without clinical supervision and/or other practice-based learning opportunities, is likely to be insufficient. The RECO study demonstrates how valued and multifaceted the role of the clinical expert is in promoting good practice for COSMHAD. They need senior organisational level support for this work. Strengths This is the first study to use realist methods to identify the contexts under which mechanisms work and identify the types of outcomes that are meaningful for staff, service users and carers. The PTs were generated from a number of sources (stakeholder consultation, literature and document synthesis and primary data) using robust methodology. This is also one of the first studies to include the lived experience of being a service user and carer and triangulate with the staff data. We sampled case studies across three types identified from mapping the broader UK service provision. Limitations The study was impacted by COVID-19. The national response to COVID-19 in health and social care impacted on responses to requests for information in the UK mapping exercise. Therefore, there may have been additional services in existence that we did not identify. Due to social distancing and various national and regional lockdowns, the data collection was almost entirely conducted online. While we collected our target sample of staff, we did not recruit to target for the service user and carer focus groups and interviews. Online methods were a barrier to some people. However, the data from the service user and carers were obtained across most of the sites and were sufficient to answer the research questions. Conclusion Co-occurring serious mental illness and substance use is a common phenomenon in mental health care, yet the mental health, substance use and related services remain ill-equipped to meet the needs of people with COSMHAD. The RECO study provides details on how and in what circumstances integrated care can work better for people with COSMHAD. This requires joined-up policy at government level and local integration of services. We have also identified the value of expert clinicians who can support the workforce in sustaining this programme of work. People with COSMHAD have complex and multifaceted needs which require a comprehensive and long-term integrated approach. The shift to integrated health and social care is promising but will require local support (local expert leaders, network opportunities and clarity of roles). Future research should focus on evaluating whole system approaches as opposed to reductionist individual interventions. This includes establishing the cost-effectiveness of key components of the COSMHAD models. Study registration This study is registered as PROSPERO CRD42020168667. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: NIHR128128) and is published in full in Health Technology Assessment; Vol. 28, No. 67. See the NIHR Funding and Awards website for further award information.
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