Diana Rose

• PhD
• Professor (Full) at King's College London

Background It is unclear how best to identify and treat women with mental disorders in pregnancy and the year after birth (i.e. the perinatal period). Objectives (1) To investigate how best to identify depression at antenatal booking [work package (WP) 1]. (2) To estimate the prevalence of mental disorders in early pregnancy (WP1). (3) To develop...

Abstract This article is a response to Oliver et al.’s Commentary ‘The dark side of coproduction: do the costs outweigh the benefits for health research?’ recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlig...

This paper starts by reflecting on the nature of memory as the paper relies on the memory of the author. It speaks to what seemed an ‘epiphany’ when understanding of mental distress was radically reframed but then argues that this ‘epiphany’ was not a moment but embedded in personal and social history and that the journey it started is still unfini...

Introduction: Civic engagement (CE) has the potential to transform mental health services and could be particularly important for low and middle-income countries (LMICs), which are rapidly developing to respond to the burden of poor mental health. Research from high income countries has found many challenges associated with the meaningful implemen...

Background Patient and public involvement (PPI) has the potential to strengthen mental health systems in Indonesia and improve care for people living with psychosis. Current evidence from other parts of the world demonstrates the need to understand the contexts in which PPI is to be enacted to ensure optimal implementation. Objective To understand...

This paper examines the concept and practice of coproduction in mental health. By analyzing personal experience as well as the historical antecedents of coproduction, we argue that the site of coproduction is defined by the legacy of the Enlightenment and its notions of “reason” and “the cognitive subject.” We show the enduring impact of these noti...

Background To provide a model for Public involvement (PI) in instrument development and other research based on lessons learnt in the co-production of a recently developed mental health patient reported outcome measure called Recovering Quality of Life (ReQoL). While service users contributed to the project as research participants, this paper focu...

Introduction Research into what constitutes the best and most effective care for women with an acute severe postpartum mental disorder is lacking. The effectiveness and cost-effectiveness of psychiatric mother and baby units (MBUs) has not been investigated systematically and there has been no direct comparison of the outcomes of mothers and infant...

Background Although patients value evidence-based therapeutic activities, little is known about nurses' perceptions. Aims To investigate whether implementing an activities training programme would positively alter staff perceptions of the ward or be detrimental through the increased workload (trial registration: ISRCTN 06545047). Method We conduc...

This commentary concerns how the organisation of State welfare benefits in the UK have changed over the last 20 years, arguing that this has had harmful, even fatal, consequences for people with disabilities and particularly those with mental distress of psychosocial disabilities. This current situation may be called that of austerity. The paper de...

Background Despite the movement towards care in the community, 40% of the NHS budget on mental health care is still attributed to inpatient services. However, long before the Francis Report highlighted grave shortcomings in inpatient care, there were reports by service user groups on the poor quality of these services in mental health. The programm...

Background Indonesia has the highest rate of years of life lost to disability or early death from Schizophrenia than any other country in the world. More than 90% of people with mental illness do not get any treatment and tens of thousands of people with psychosis are illegally detained (‘pasung’) in the family home. Civic engagement, a core part o...

Background: Participatory research has as a central tenet that power relations between researcher and researched be reduced. In the last 20 years, a substantial literature has demonstrated the difficulties inherent in this as well as the troublesome nature of certain central concepts. Aims: (1) To describe and illustrate a new form of participat...

Purpose: Service user involvement in instrument development is increasingly recognised as important, but is often not done and seldom reported. This has adverse implications for the content validity of a measure. The aim of this paper is to identify the types of items that service users felt were important to be included or excluded from a new Rec...

Background: Cognitive problems in people with schizophrenia predict poor functional recovery even with the best possible rehabilitation opportunities and optimal medication. A psychological treatment known as cognitive remediation therapy (CRT) aims to improve cognition in neuropsychiatric disorders, with the ultimate goal of improving functional...

We discuss Norwegian service users' experiences with community mental health treatment in general, and the interprofessional Assertive Community Treatment (ACT) model in particular. To gain the right to treatment, service users have to accept certain limitations, such as medication and community treatment orders (CTOs). Seventy participants respond...

This current issues article is a brief critical examination of the recent Research Councils UK agenda and call for cross-disciplinary research in mental health. Our argument is based on the fact that patient and public involvement (PPI) is the only involvement and influencing strategy for service users and survivors in the agenda. Service user and...

Psychiatry is on the cusp of major changes. It is time to look at where the specialty has been, where it is now, and to try to imagine its future. What will psychiatrists do, and how will this be delivered and financed? How will psychiatry’s relationship with society change? How must mental health laws adapt? Can psychiatry go digital? And how will...

Coercion remains a central aspect of many people’s mental healthcare. It can include the use of legislation to restrict freedoms, the use of physical restraint, the restriction of freedom of movement and/or association, and the forced or covert administration of medication. There is good evidence that the use of such measures can traumatise service...

Background Poorer patient views of mental health inpatient treatment predict both further admissions and, for those admitted involuntarily, longer admissions. As advocated in the UK Francis report, we investigated the hypothesis that improving staff training improves patients’ views of ward care. Method Cluster randomised trial with stepped wedge...

Background: There are significant challenges across the research pathway, including participant recruitment. This paper aims to explore the impact of clinician recruitment decision-making on sampling for a national mental health survey. Method: Clinical teams in 20 English mental healthcare provider organisations screened caseload lists, opting-out...

This paper considers possible epistemologies for user-led and survivor research by drawing on four discourses: the mainstream English tradition, Canadian Mad Studies, critical theory more generally and feminist standpoint epistemology. It discusses general, universalising epistemologies, the extent to which these characterise the discourses at stak...

Aims Mental health stigma and discrimination are significant problems. Common coping orientations include: concealing mental health problems, challenging others and educating others. We describe the use of common stigma coping orientations and explain variations within a sample of English mental health service users. Methods Cross-sectional survey...

Background: Capturing service users' perspectives can highlight additional and different concerns to those of clinicians, but there are no up to date, self-report psychometrically sound measures of side effects of antipsychotic medications. Aim To develop a psychometrically sound measure to identify antipsychotic side effects important to service...

Objectives: Obsessive compulsive disorder (OCD) can be hugely disabling. Although very effective psychological treatments exist, many people delay years before seeking help or never seek treatment. There have been clinical observation and short questionnaire studies on why people delay, but little qualitative research exists on this complex subjec...

The paper presents user-led research projects with participatory roles for mental health service users as co-researchers. In a descriptive and accessible manner the authors highlight the development of user/survivor-led research projects from within user/survivor-movements as illustrated by 'The Well-Being Project' conducted by the California Menta...

The paper presents user-led research projects with participatory roles for mental health service users as co-researchers. In a descriptive and accessible manner the authors highlight the development of user/survivor-led research projects from within user/survivor-movements as illustrated by 'The Well-Being Project' conducted by the California Menta...

The paper presents user-led research projects with participatory roles for mental health service users as co-researchers. In a descriptive and accessible manner the authors highlight the development of user/survivor-led research projects from within user/survivor-movements as illustrated by 'The Well-Being Project' conducted by the California Menta...

Background This study focuses on health care received by people with serious mental illness (SMI). The aim is to examine the economic implications of different locations of management of care and the views of service users and staff regarding services set up as alternatives to secondary care. Objectives Specific objectives are to (1) identify peop...

S1 Using computerized adaptive testing Tim Croudace S2 Well-being: what is it, how does it compare to health and what are the implications of using it to inform health policy John Brazier O1 “Am I going to get better?”—Using PROMs to inform patients about the likely benefit of surgery Nils Gutacker, Andrew Street O2 Identifying Patient Reported Out...

Background: There is limited evidence for effective interventions in the treatment of post-traumatic stress symptoms within individuals diagnosed with schizophrenia. Clinicians have concerns about using exposure treatments with this patient group. The current trial was designed to evaluate a 16-session cognitive restructuring programme, without di...

Objective: This study evaluates English newspaper coverage of mental health topics between 2008 and 2014 to provide context for the concomitant improvement in public attitudes and seek evidence for changes in coverage. Method: Articles in 27 newspapers were retrieved using keyword searches on two randomly chosen days each month in 2008-2014, exc...

Objective Discrimination reported by mental health service users in England is high. The study aims to determine changes in mental health-related discrimination from 2008 to 2014. Methods Samples of mental health service users were interviewed from 2008 to 2014 using the Discrimination and Stigma Scale version 12. Social capital in terms of access...

Objective To better understand mental health service users’ experiences of stigma and discrimination in different settings. Method An annual telephone survey of people with a mental health diagnosis conducted to evaluate the Time to Change antistigma campaign in England. Of 985 people who participated in 2013, 84 took part in a qualitative intervie...

Objective To investigate whether public knowledge, attitudes, desire for social distance and reported contact in relation to people with mental health problems have improved in England during the Time to Change (TTC) programme to reduce stigma and discrimination 2009–2015. Methods Using data from an annual face-to-face survey of a nationally repres...

Patient Reported Outcome Measures (PROMs) assess health status and health-related quality of life from the patient/service user perspective. Our study aimed to: i. develop a PROM for recovery from drug and alcohol dependence that has good face and content validity, acceptability and usability for people in recovery; ii. evaluate the psychometric pr...

Depression is common in patients with coronary heart disease (CHD) but the relationship is uncertain. In the UK, general practitioners (GPs) have been remunerated for finding depression in CHD patients; however, it is unclear how to manage these patients. Objectives Our aim was to explore the relationship between CHD and depression in a GP populat...

The term “service user involvement in research” implies that service users are stakeholders in the research process, rather than mere participants. The principles of involvement have long been recognised in this journal (Callard & Rose, 2012; Callard et al. 2012; Evans et al., 2012; MacInnes et al., 2011; Rush, 2008; Thornicroft et al., 2002; Towne...

Purpose: People with severe mental illnesses (SMI) experience a 17- to 20-year reduction in life expectancy. One-third of deaths are due to cardiovascular disease. This study will establish the relationship of SMI with cardiovascular disease in ethnic minority groups (Indian, Pakistani, Bangladeshi, black Caribbean, black African and Irish), in th...

Background The Francis report highlights perceptions of care that are affected by different factors including ward structures. Aims To assess patient and staff perceptions of psychiatric in-patient wards over time. Method Patient and staff perceptions of in-patient psychiatric wards were assessed over 18 months. We also investigated whether the typ...

Background Substantial policy, communication and operational gaps exist between mental health services and the police for individuals with enduring mental health needs. Aims To map and cost pathways through mental health and police services, and to model the cost impact of implementing key policy recommendations. Method Within a case-linkage study,...

In 2010, South London and Maudsley NHS Foundation Trust (SLaM) established a programme replacing the borough directorates responsible for adult mental health services with three Clinical Academic Groups (CAGs), each of which took on a subset of adult services straddling all four boroughs. Care pathways were also introduced. We studied the Mood Anxi...

Background: Psychiatric ward design may make an important contribution to patient outcomes and well-being. However, research is hampered by an inability to assess its effects robustly. This paper reports on a study which deployed innovative methods to capture service user and staff perceptions of ward design. Method: User generated measures of the...

Background: Since 1990, health policy in England has stressed the importance of user involvement in shaping and delivering services. Aims: To explore mental health service user-led organisations (ULOs) in England, as they interact with decision-makers to bring about change desired by them with a focus on institutional norms behaviour and special...

Background: Research has found considerable variation in how far individuals with a diagnosis of mental illness experience discrimination. Aims: This study tested four hypotheses: (i) a diagnosis of schizophrenia will be associated with more discrimination than depression, anxiety or bipolar disorder; (ii) people with a history of involuntary tr...

Purpose: A large proportion of mental health costs is inpatient care but little is known about their variation between patients. The aim of this study was to measure and identify the predictors of costs of staff contacts and activities on inpatient wards. Method: Inpatients from psychiatric hospital wards in south London were interviewed in 2008...

Background: Continuity of care (COC) is central to the organization and delivery of mental health services. Traditional definitions have excluded service users, and this lack of involvement has been linked to poor conceptual clarity surrounding the term. Consequently, very little is known about the differences and similarities in the conceptualiza...

Patients can provide consent to have their clinical records linked to a research register, a process known as consent for contact (C4C). There is evidence about how to engage people with mental illness in C4C, but nothing specific to older adults. This is a priority area for research (for example, dementia trials), although sign-up rates to C4C are...

Aims In 2010, South London and Maudsley NHS Foundation Trust (SLaM) entered a new academic health science centre. As part of this, the borough directorates that had previously managed the delivery of adult mental health services were abolished; instead, three Clinical Academic Groups (CAGs), including a Mood Anxiety and Personality CAG were establi...

Aim: To identify indicators that diverse stakeholders believe are important when measuring recovery from addiction. Methods: Our previous work with service users had generated 28 indicators of recovery. Using Delphi group methodology (three rounds), we assessed the extent to which stakeholders working in the addictions field agreed that the 28 indi...

Background: Most research on interventions to counter stigma and discrimination has focused on short-term outcomes and has been conducted in high-income settings. Aims: To synthesise what is known globally about effective interventions to reduce mental illness-based stigma and discrimination, in relation first to effectiveness in the medium and...

Approximately 30 % of people with a diagnosis of schizophrenia receive little to no benefit from current medications. There is therefore an urgent need to develop more precisely targeted and effective treatments. Identifying biomarkers to predict response to treatment and stratify patients into groups may be a way forward. However, we know little a...

Stigma and discrimination in relation to mental illnesses have been described as having worse consequences than the conditions themselves. Most medical literature in this area of research has been descriptive and has focused on attitudes towards people with mental illness rather than on interventions to reduce stigma. In this narrative Review, we s...

Background: Patient-generated health outcome measures are important in the assessment of long-term treatment goals for Rheumatoid Arthritis (RA), but few psychometrically sound measures are available. The MAPLe-RA (Measuring Actual Patient-Led expectations in RA) is a new questionnaire and its psychometric properties are not investigated. This stu...

“Self-determination” is taken to mean a freedom from forms of control or coercion deriving from external limitations imposed through common treatment practices and social institutions. The relationship between self-determination and discrimination is noted. Four domains of mental health practice are considered in which patient self-determination ca...

Background A Joint Crisis Plan (JCP) aims to empower patients whilst facilitating early detection and treatment of relapse. Two studies have suggested that JCPs might reduce compulsory treatment and improve therapeutic relationships. Aim The CRIMSON randomised controlled trial compared JCPs with treatment as usual for people with severe mental illn...

Electronic Patient Health Records (ePHRs) contain information created, accessed, monitored and maintained by patients. This paper describes how an ePHR called myhealthlocker™ was used by people with severe mental illness to monitor and input their own health-related outcomes, and whether they derived any benefit from it. Individuals using local sec...

This study aimed to develop a clinically acceptable method of therapeutic drug monitoring (TDM) for olanzapine and risperidone and to evaluate the feasibility of its implementation. A non-randomised study of inpatients from five Mental Health Trusts was conducted, with a clinical interview at the time of TDM and a subsequent 6-week follow-up review...

Cognitive remediation (CR) is a psychological therapy, effective in improving cognitive performance and functioning in people with schizophrenia. As the therapy becomes more widely implemented within mental health services its longevity and uptake is likely to depend on its feasibility and acceptability to service users and clinicians. To assess th...

Research registers of potential participants linked to Electronic Health Records (EHRs) provide a basis for screening and identifying people suitable for studies. Such a system relies upon people joining the register and giving permission for their record to be used in this way. This study describes the process of training clinicians to explain EHR...

Despite increasing calls for shared decision making (SDM), the precise mechanisms for its attainment are unclear. Sharing decisions in mental health care may be especially complex. Fluctuations in service user capacity and significant power differences are particular barriers. We trialled a form of facilitated SDM that aimed to generate patients' t...

Depression is highly prevalent within individuals diagnosed with schizophrenia, and is associated with an increased risk of suicide. There are no current evidence based treatments for low mood within this group. The specific targeting of co-morbid conditions within complex mental health problems lends itself to the development of short-term structu...

Although studies suggest that fear plays an important role in shaping mental health service users' experiences, evidence is patchy and the contexts, conditions and consequences of fear have rarely been researched. This paper explores the role of fear in adult mental health service users' lives and describes its implications for mental health servic...

Outcomes for individuals with psychosis remain far from acceptable. Recently, prominent psychiatrists have called for an improved understanding of the impact of social contexts, and how social contexts might influence the development and maintenance of mental health problems. A key social context for individuals with psychosis is the therapeutic re...

Background Recruitment to mental health research can be challenging. `Consent for Contact¿ (C4C) is a novel framework which may expedite recruitment and contribute to equitable access to research. This paper discusses stakeholder perspectives on using a C4C model in services for people with psychosis.Method This is a cross sectional study investiga...

Therapeutic relationships are considered a key component of good psychiatric care, yet its association with outcomes for individuals with psychosis remains unclear. 569 service users with psychotic disorders and care coordinators in community settings rated their therapeutic relationship; outcomes were assessed 18 months later. In multivariate anal...

This study explores experiences of stigma and discrimination amongst people diagnosed with bipolar disorder (BD) or borderline personality disorder (BPD). Inspired by Margaret Archer's morphogenetic sequence and the ontological depth of critical realism, a temporal framework for stigmatisation, incorporating structure and agency, is developed and u...

Background Previous attempts to implement electronic Personal Health Records (ePHRs) underline the importance of stakeholder involvement. We describe the development of an ePHR for people with severe and enduring mental health problems, and provide a model of involving stakeholders throughout.Methods There were three stages to the development of th...

Background Over the last 20 years governments around the world have promoted user involvement in an effort to improve the quality of health services. Despite the growing emphasis placed on user involvement in England, there is a paucity of recent studies looking at how service users and professionals perceive the outcomes of user involvement polici...

Omeni, Edward, Barnes, Marian, MacDonald, Dee, Crawford, Mike and Rose, Diana (2014)

Background: Hospital care is still an integral part of mental healthcare services. But the impact of ward design on treatment outcomes is unclear. Aims: To review the effects of ward design on patient outcomes and patient and staff well-being. Method: A systematic review of literature was carried out on Medline, Embase and PsycINFO. Papers on...

ContextNational Health Foundation Trusts present opportunities for individual mental health service users to be active in the governance of trusts. This is one of a range of mechanisms for patient and public involvement and one which promotes an individual rather than collective approach to involvement.Objective Within the context of a broader stud...

Aims: To explore how service users’ views of measuring addiction recovery differ from those of service providers. Methods: Five focus groups conducted in two English cities with (i) people currently using Class A drugs (n = 6); (ii) people currently using alcohol (n = 12); (iii) individuals in residential detoxification (n = 12); (iv) individuals i...

Purpose Research suggests levels of discrimination among mental health service users in England are high, but fell over the course of the first phase of the Time to Change programme to reduce stigma and discrimination (2008–2011). The aim of this study was to determine changes in discrimination levels, both overall and by the area of life in which...

Objectives To develop user-generated quality standards for young people with mental health problems in primary care using a participatory research model. Methods 50 young people aged 16–25 from community settings and primary care participated in focus groups and interviews about their views and experiences of seeking help for mental health problem...

Aims: This study builds on existing research on the prevalence and consequences of mental illness discrimination by investigating and quantifying the relationships between experienced discrimination and costs of healthcare and leisure activities/social participation among secondary mental health service users in England. Methods: We use data fro...

Aims: To explore ways of measuring addiction recovery and the extent of agreement/disagreement between diverse service providers on potential recovery indicators. Methods: Separate online Delphi groups with (i) addiction psychiatrists (n = 10); (ii) senior residential rehabilitation staff (n = 9); and (iii) senior inpatient detoxification unit staf...

Recent legislation and guidance in England emphasises the importance of service user choice in care planning. However, it is not obvious how best to facilitate choices in care planning, and some clinicians are concerned that service users may make 'unwise' decisions. This study aimed to examine mental health service users' preferences and prioritie...

This study set out to measure the extent and perceived impact of service user involvement (SUI) in mental health services and to explore different forms of SUI, both collective and individual. The focus was on service users’ (SUs’) interactions with managers and other key decision-makers in the UK NHS and social care. The theoretical frameworks use...