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Executive Summary
Background
This document describes a research project on the nature, scope and impact of existing service provision in Scotland for people with co-existing mental health and substance misuse problems. The study was commissioned by the Scottish Executive in 2003 to extend current international evidence regarding co-morbidity, address perceived gaps in information on the quality of the provision of care for this client group and help inform the development of the co-morbidity agenda in Scotland.
The research fits within the wider strategic context in the UK, complementing other initiatives or strategies, such as the National Service Framework recommendations for people with dual diagnosis, the Mind the Gaps report of the SACAM/ SACDM Working Group, the Health Advisory Service publication on Standards for Mental Health Services, the Royal College of Psychiatrists information manual on co-morbidity and the Department of Health Mental Health Policy Implementation Guide for Dual Diagnosis.
Aims and objectives
The main aim of the study was to identify the broad range of health and social care needs of people with co-morbid mental health and substance misuse issues in Scotland. Key issues included the quality of current provision and organisation of health, social care and the voluntary and independent sectors in addressing these needs, common factors that might impede this provision, the interrelation of different services and examples of good practice.
The researchers interviewed commissioners, service providers and service users to obtain a range of perspectives on these issues. As decision makers and future planners, the commissioners helped to establish local strategic and bureaucratic contexts. Providers from the independent, voluntary and statutory sectors gave the research an operational perspective. The views of service users on the services they utilised, their expectations and experiences, provided valuable new insights and made a unique contribution to the project.
Methods
The main methods of data collection included in-depth, semi-structured face-to-face interviews with 38 service users and 26 commissioners, and focus group discussions, held with 90 service providers directly delivering interventions to service users. The narratives were explored using Framework Analysis (Ritchie and Spencer 1994); a type of thematic analysis specifically developed for the public sector.
Commissioners
Commissioners interviewed for the project were core individuals from different sectors who occupied senior managerial positions and had planning and commissioning responsibilities for their respective service sectors. They included Directors of Social Services, Public Health Physicians, Drug and Alcohol Team co-ordinators and Lead Officers in Mental Health.
Interviews explored the commissioners' broad views of issues relating to co-morbidity and examined specific features of relevant policy and practice.
Providers
The providers consisted of a cohort of participants from diverse backgrounds, with either primary contact with co-morbid individuals, for example, addiction services or mental health services, or secondary contact, such as homeless associations and housing agencies.
The discussions were conducted in relation to real co-morbid case histories in the form of vignettes. The vignettes covered different mental health and substance misuse combinations frequently encountered, including depression/anxiety and alcohol misuse and possible schizophrenia and cannabis use. Focus group topics included issues around practice and policy, assessment, treatment interventions and wider organisational issues.
Service users
The sample of 38 respondents included more males (30) than females (8), similar numbers across different age-bands, a spread of co-morbid combinations, some people with complex personal and social situations and some respondents with less severe issues.
Interviews were based around service users' experiences and perceptions of service provision in relation to their mental health and/or substance misuse problems. The interviews provided insight to the different ways of accessing services, the types of treatment received, helpful and limiting experiences and what might be better provided in the future.
Accessibility and availability
Signposting: The degree to which services were advertised and the level of knowledge regarding the nature, remit and limitations of services were insufficient to guide the service user either to or through the service maze. Booklets and pamphlets went out of date quickly and often appeared or were available only in a limited number of facilities, most notably in general health facilities. In the absence of a 'live' and regularly updated directory of service remit and availability, providers were likely to continue to rely on historical links to services rather than on what was actually available.
Structural obstacles: The structure of existing services and their service philosophies were considered by many as creating barriers for co-morbid service users who might need input from a number of different service providers. Reports suggested that traditional trajectories rather than client-centred thinking often influenced decision-making about approaches to service users. As a result, there were debates between services as to who should take responsibility for service users with different presenting problems.
Management of mild to moderate mental health problems in substance misusers: Individuals with substance misuse-related issues often did not have sufficiently severe mental health problems to be eligible for attention from community mental health teams which prioritised severe and enduring mental illness. The majority with mild to moderate mental health issues were then sometimes inappropriately managed by substance misuse agencies or by primary care services.
Management of mild to moderate substance misuse problems in those with mental health problems: Similarly, individuals who used substances such as cannabis that were commonly thought to be relatively innocuous often did not qualify for eligibility to substance misuse services. These concentrated largely on opiates and other injectable drugs. This service configuration created obvious gaps in provision for people who needed help for both substance use and mental health issues.
Particular tensions:
Accommodation: Positive experiences were reported in relation to supported accommodation, though the availability of such living arrangements was scarce and often restricted to those who did not use substances.
Contentions between drugs misuse and alcohol: Many of the respondents, commissioners and providers included, expressed dismay and frustration over the ways in which generally more money and other resources were made available for drug misuse compared to alcohol.
Specialist provision: Frustrations were expressed at the difficulty experienced in accessing specialist help in a crisis. The responsiveness of the 'system' to the needs of a group of people with multiple needs was challenging for all concerned.
Service characteristics
The need for flexibility and consistency: The research highlighted the contrast between the inflexibility of services and the chaotic characteristics of co-morbid service users' lives. The narratives described how people living with mental health and substance use problems had ordinary life goals such as obtaining work, forming meaningful relationships, and generally improving the quality of their lives. The services set up to support their recovery, however, were heavily medicalised and not sufficiently flexible or appropriate to their needs, concentrating largely on 'diagnosis' and ignoring the wider picture.
The need for responsiveness and continuity: Providers and users alike reported that when service users asked for help they needed it immediately. They did not want to be placed on a waiting list and told to come back later. Equally, throughout the research project, it was generally felt that service users were often isolated and cut off from appropriate services after formal treatment had ended. A particular example cited was of a service user leaving a hospital environment, where no-one appeared to be 'in charge' of that person to help them access further support services to address their total need. There was a clear need for case managers or co-ordinators.
The need for strengthening psychotherapeutic approaches: Participants agreed that the most effective interventions took the form of warm, friendly, empowering services usually provided by one individual on a continuous basis. Concern was expressed at the relative lack of psychotherapeutic interventions available and the consequent lack of opportunity to develop trusting, therapeutic relationships with one person.
The need for holistic care: While there were examples of good practice and many positive experiences of different therapeutic relations, service users, commissioners and providers alike commented with regret that several services did not treat problems holistically and in a joined-up manner. They continued to consider mental health and substance misuse issues in relative isolation from one another and deal with them sequentially.
Service organisation
The need for specialists: There was a lack of dedicated co-morbidity specialists who appreciated the interaction of substance misuse and mental health problems and had the expertise and the resources to undertake this work. Both service users and providers identified the potential benefits of such specialists, either embedded within mainstream substance misuse or mental health teams or in specialist units.
The need for training to underpin provision: Service providers stated that they needed specific training and support that would help them deal with the complexities co-morbid individuals brought to the services. A minimum requirement would be to have access to workers who did have the knowledge and expertise of supporting people with co-morbid issues.
Multi-agency partnerships: In many parts of Scotland, health services and local authorities were working together and shared funds, yet evidence of joint working remained patchy. Where it did exist, experiences were positive. There was evidence to suggest that putting joint working into operation was envisaged differently across the researched localities. Although multiple engagements were considered to be inevitable, limits to the number and complexity of arrangements needed to be put in place. For some, more informal intersectoral agreements remained a realistic option. For others, change in infrastructure, in terms of coterminous partnerships between health, social and non-statutory sectors, was viewed more favourably than implementing service change per se.
Shared assessment protocols and development of care pathways: As a result of patchy joint working arrangements, shared assessments and the creation of care pathways for co-morbid individuals were lacking or under-developed in several locations. Again, there was some controversy regarding the usefulness of uniform integrated care pathways for such a heterogeneous group of people with quickly changing but ongoing needs. Discussions with commissioners indicated that the requirement for joint-funding approval in creating a care package could help to bring about closer collaborative efforts between health and social care.
Bureaucratic quagmire: Providers and commissioners voiced concern over the expediency of policy and directional changes and associated changes in remit, despite the consistency of the joint planning, joint commissioning and joint delivery messages for mental health and other needs over the past decade. These structural and procedural modifications were believed to act as barriers to developing functional and successful collaborative efforts and providing consistency in care and support. The volume of information and guidelines to wade through were also a cause of concern and their relevance to local contexts was questioned, especially in relation to rural areas.
Exclusion: Service users felt excluded from decisions about their care and wanted greater involvement and empowerment. Many providers and commissioners thought that only lip service was paid to service users during formal meetings. Their opinions were not taken into account and were not followed through by action at the planning level. Although user involvement was acknowledged by some to be important, others considered that service users were not necessarily best placed or informed to direct and advise on service provision and practice. Service users interviewed also stressed their need for peer support groups.
Stigma and inclusion: All participants spoke of aspects of wider cultural and social problems that needed addressing. Stigma was an enduring feature of mental health and substance misuse problems alike. Since the late 1990s, a marked policy shift towards recognising the importance of social inclusion had taken place and good progress was being made in Scotland on challenging stigma around mental ill-health. Although the structures within which care and support are provided had changed for many, the language of the various professional silos and the theory that underpinned them frequently remained the same.
Concerns about the medicalisation of co-morbid issues and neglect of social factors did not imply that providers and commissioners were ignorant of their professional limitations or the need for a holistic outlook. Most practitioners appeared to value their relationships with users as individuals with wider needs. Nonetheless, tension continued to exist between the real needs of co-morbid service users and the resources to provide 'holistic care' and the treatment interventions currently available and administered. As social and health care workers operated as members of a wider collective social culture, understanding this culture offered insights into some of the social forces that shaped their work and in turn could allow attitudinal change to take place at the societal, professional and individual level.
Conclusions and implications
The picture that emerged from this study was one of a group of people who struggle daily with the realities of living with co-morbid mental health and substance misuse problems and for whom existing support services have often been inappropriate, inadequate and which may further undermine their already fragile self esteem and coping strategies. The lives of service users were characterised by a series of loss: loss of a routine life, loss of social networks, including loss of friends and family, loss or inability to obtain employment and loss of financial security. Service users were generally considered by providers to lead 'chaotic' lives with a multiplicity of problems jostling for attention.
Services for co-morbidity varied in number and quality across the different research localities. With notable exceptions, the care that services provided was unsatisfactory and inadequate. Exceptionally, key individuals established a therapeutic relationship with service users within a holistic framework, regardless of the primary 'diagnosis' or 'diagnoses'. This applied to both statutory and non-statutory service provision.
There were examples of good practice. However, the themes identified were lack of awareness of available help, lack of clarity about pathways for help, and a lack of ongoing support. How professional roles and responsibilities within a particular socio-cultural context impinged on responses to the co-morbid client were still poorly understood, as were the reasons, causes, consequences and evidence-based treatment interventions for this group. What was clear is that there were considerable training needs across all professional groups and agencies.
Some commissioners remained undecided whether following the national guidance to implement services was ideal. Together with service providers they were, however, unanimously agreed that specialist staff should be based within mainstream mental health and/or substance misuse services and not necessarily reside in stand alone specialist co-morbidity teams. The demand was for specialist mental health and substance misuse competencies provided by a number of practitioners and greater general awareness for all staff working in these services.
Training, information and awareness raising are required for service users, carers, service providers, commissioners and the general public in order to contribute to a greater understanding of combined mental health and substance misuse issues and to engender attitude change.
The human and economic cost to people with substance problems and mental health difficulties, to the wider community and to health and social services is difficult to quantify. A planned prioritised response, however, can augment clinical, service, training and research agenda.
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