Joanna Fox

Best Practice in Maternity and Mental Health Services? A Service User’s Perspective

The birth of a baby is a much-anticipated event. However, for some women diagnosed with mental health needs their pregnancy and potential parenting are seen as problematic. Even if the child is much wanted and the pregnancy is planned, this news can be greeted with uncertainty and concern by the medical and maternity services. They need to plan how they will “manage” the mother’s behavior and protect the child from her potentially risky behavior. Most literature focuses on the negative impact that mental illness has on the development of the baby and the young child.1,2 It emphasizes the risk factors that specific mental illness diagnoses might have and the mother’s potential for abuse of her offspring.3,4 However, qualitative literature, which has been undertaken with mothers with a diagnosis, introduces a different perspective. Indeed fear of removal of the child,5 a perception of the intrusiveness of services5,6 and the stigma of mental ill health dominate their contact with mental health and child development services.7,8 In this article, I use a synthesis of first person narrative and research to explore the experience of being a both a pregnant woman and new mother who has a diagnosis of schizophrenia and my relationship with both mental health and maternity services. I describe the best practice care I received from the mental health services and the reactive, diagnosis led service that was set in motion by the maternity services. I intertwine the 2 elements of research and experience to explore how service provision can be more effective when it is built on a model that promotes shared decision-making and a sense of trust with shared responsibility. I seek to challenge the process led nature of care that leads professionals to become unquestioning actors in a game of risk management and discuss how practitioners can work with people as individuals. In this discussion, I highlight the importance of the strengths led approach, which is underpinned by a belief in clients’ capabilities and strengths, not their deficits.

‘The view from inside’: understanding service user involvement in health and social care education

Service users are increasingly involved in health and social care education, whilst the government is committed to increasing access to employment for people with mental health needs. The benefits of involving service users in social work education have been identified, including increasing skills, confidence, and building capacity; yet there is little research that reflects on the personal costs of involvement. An understanding of the social model of disability underpinned by the recovery approach enables us to conceptualise more equal involvement of experts by experience in health and social care education. This enables us to respect their inclusion by noting that it is our non‐disabled environment which disables and excludes people from the work place, whilst an understanding of recovery requires us to accept that people with mental distress may have to manage the limitations of their distress in the work place rather than live a life completely free of symptoms.

The Importance of Expertise by Experience in Mental Health Services

Drawing partly on personal experience, the author of this article seeks to unpack the expertise that service users bring to the design and delivery of mental health services. Service user involvement cannot be imposed by policy diktat from above, she argues. Rather, it must be nurtured at the grass roots, by allowing service users to take control over their own lives, and their care and treatment.

Recovery: Bringing service users in

We introduce the new meaning of recovery and refl ect on its potential to develop current thinking and practice in mental health with adults, and look at its implications for service providers and service users. We analyse the relevance of this concept to the context of the UK government’s policy to move disabled people, including mental health service users, from ‘welfare to work’. The social and economic climate that drives this policy agenda and the implications for society of the focus on employment are outlined, as we refl ect on the role of work in supporting or hindering the recovery process and identity re-formation, in part through the experience of the fi rst author. We conclude by suggesting how practice can enable a process of returning to ordinary living, including employment, that supports recovery through a process of shared responsibilities.

The Contribution of Experiential Wisdom to the Development of the Mental Health Professional Discourse

Experiential wisdom, which is expert knowledge derived from the lived experiences of service users and carers, has the potential to influence the professional discourse of UK mental health. This is a concept developed by Foucault which highlights the development of new knowledge in relation to the normative framework of professional practice. Recent developments in the UK recognise the importance of experiential wisdom as service users influence the knowledge base of practice through their involvement in research, are included in making shared decisions with professionals about their care and treatment, and influence the professional development of the workforce as they contribute to education and training. My experiences of recovery are presented to explore the potential contribution of service user expert knowledge to the development of the mental health professional discourse. My story relates the onset of mental distress, exploring the nature of paranoia, and highlighting how these very real symptoms are experienced. The on-going nature of recovery after the trauma of mental health crisis is identified with a discussion of support which can enable the person in their journey. Experiences of shared decision-making in care and treatment are related. The presentation of this story illustrates the application of service user expert knowledge to the practical and theoretical development that underpins the mental health professional framework. The article concludes with reflection about the role of service user expert knowledge in beginning to dissolve the artificial barriers between professionals and service users, and its potential to influence the professional discourse.

Being a service user and a social work academic: balancing expert identities

Abstract I am a service user and academic working in a university social work department. My hybrid identity allows me to draw on different types of knowledge in all aspects of my work, including: academic, practice and experiential wisdom. Service user involvement is mandated across social work education but the scope and breadth of different kinds of participation is developed in diverse ways across university contexts. This article affirms the value of service user involvement in health and social care education, exploring its positive impact on students. When lecturers share personal experience of using services alongside practice and academic wisdom in the course of teaching, sometimes the value of experiential knowledge is doubted and its influence dismissed. I examine the importance of experiential wisdom in social work education, specifically when it is embedded in an academic role in a university social work department, and consider how it can be respected and valued. The parallel experiences of involving peer support workers in mental health services, who use their knowledge of recovery to mentor other service users, are then briefly examined, together with reflection of the concerns across mental health with professionals sharing their experiential wisdom with the people that they support.

Exploring the value of involving experts-by-experience in social work research: experiences from Slovenia and the UK

ABSTRACT The evidence base for the methodological validity of conducting participatory research is becoming established. This article reviews the experiences of two researchers undertaking Ph.D. studies in Slovenia and UK, respectively, and considers the value of involving service users and carers in social work research. The Slovenian research involved user-researchers who developed research tools and undertook qualitative research. The first author explores the co-researchers’ impact on the research process and its outcomes, identifying both individual and collective empowerment of the co-researchers. The English study involved people from diverse backgrounds, who developed a recovery training programme for carers of people with schizophrenia. The second author describes how the steering group, and the carers who participated in the programme were impacted by the research process and experienced a sense of empowerment and how they influenced the development of new knowledge through the reflexive cycle. The authors draw out the commonalities and differences in our research that add to the existing evidence base supporting the development of participatory inquiry. We conclude by affirming the value of user participation in research in leading to the empowerment of users, the development of new research perspectives, and in contributing to theory in social work research and practice.

Defining expertise by experience

Drawing partly on her own experience, Joanna Fox seeks to unpack the expertise that service users bring to the design and delivery of mental health services. Service user involvement cannot be imposed by policy diktat from above, she argues. Rather, it must be nurtured at the grass roots, by allowing service users to take control over their own lives, and their care and treatment.