Vanessa Pinfold

Experiences of discrimination among people using mental health services in England 2008-2011

BACKGROUND Research suggests that levels of discrimination against people using mental health services are high; however, reports of these peoples experiences are rare. AIMS To determine whether the Time to Change (TTC) programme target of 5% reduction in discrimination has been achieved. METHOD Separate samples of people using mental health services were interviewed annually from 2008 to 2011 using the Discrimination and Stigma Scale to record instances of discrimination. RESULTS Ninety-one per cent of participants reported one or more experiences of discrimination in 2008 compared with 88% in 2011 (z = -1.9, P = 0.05). The median negative discrimination score was 40% in 2008 and 28% in 2011 (Kruskal-Wallis χ(2) = 83.4, P<0.001). CONCLUSIONS The proportion of participants experiencing no discrimination increased significantly over the course of TTC but by less than the initial target. The overall median discrimination score fell by 11.5%. Data from 2010 and 2011 suggest that these gains may be hard to maintain during economic austerity.

England's Time to Change Antistigma Campaign: One-Year Outcomes of Service User-Rated Experiences of Discrimination

OBJECTIVE This study evaluated the progress at one year of Englands Time to Change (TTC) program, launched in 2009, toward meeting its target to reduce mental health-related stigma and discrimination by 5%. METHODS TTC comprises three national components: antistigma marketing campaign activities, mass physical exercise events (Time to Get Moving) to facilitate social contact between people with and without mental health problems, and an online resource on mental health and employment (Time to Challenge). Part of the TTC evaluation consists of an annual national phone survey of mental health service users. Participants (537 in 2008 and 1,047 in 2009) were current outpatient service users aged 18-65 registered with National Health Service community mental health teams that are selected annually to represent the range of socioeconomic deprivation. Telephone interviews were conducted with service users with the Discrimination and Stigma Scale (DISC) to document experienced discrimination and anticipated discrimination in the past 12 months. RESULTS One or more experiences of discrimination were reported by 9-1% of participants in 2008 and 87% of participants in 2009 (p = .03). In 2009 significantly less discrimination was reported from a number of common sources, including family (reported by 53% in 2008 and 46% in 2009), friends (53% and 39%), finding employment (24% and 16%), and keeping employment (from 17% to 13%). Experiences of discrimination from mental health professionals did not change significantly (reported by about one-third of participants in both years). CONCLUSIONS Results suggest positive progress toward meeting the programs targeted 5% reduction in discrimination.

Challenging Stigma and Discrimination in Communities: A Focus Group Study Identifying UK Mental Health Service Users’ Main Campaign Priorities

Background: Stigma and discrimination experienced by people with mental health problems have been identified as major obstacles to treatment and recovery. Less is known about how to effectively tackle stigma-discrimination, although there are numerous international, national and local programmes attempting to improve public mental health literacy and anti-discrimination evidenced based practice. Aims: To explore mental health service users’ views on how campaigns to address stigma and discrimination should prioritise their actions. Method: Qualitative study using focus group discussions, involving 33 persons aged between 25 and 75. Results: A triad of diminished credibility, dis-empowerment with particular reference to communication problems and avoidance by their social network defined experiences of stigma. Reactions to stigma can be placed in four categories: avoid stigma, resign yourself to it, challenge it, or distance yourself from others with a mental health problem. A range of solutions was discussed with most favouring changes within the health services that are currently supporting them over traditional educational programmes with the public. Conclusions: For mental health service users stigma must be tackled on many different levels reflecting the varied and complex impact that negative social reactions have on an individual’s life. When asked to prioritise one area, most service users in our sample highlighted reforms within the health service for tackling stigma and discrimination.

Persuading the persuadable: evaluating compulsory treatment in England using Supervised Discharge Orders

Background: Supervised Discharge Orders (SDOs) were introduced in 1995, as an amendment to the Mental Health Act in England and Wales. They require patients to abide by specific conditions on discharge from hospital, but can not enforce medication compliance. On introduction, SDOs were received with scepticism by the psychiatric profession. The purpose of this study was to describe the use of SDOs in England and the characteristics of patients made subject to these orders, and to evaluate the effectiveness of the order in securing treatment compliance on discharge from hospital. Method: A survey was conducted of 170 mental health provider Trusts in England. Interviews with senior managers in 12 Trusts and associated Local Authorities were subjected to qualitative analysis, and a cohort of patients subject to SDOs in 56 randomly sampled Trusts was described. Results: SDOs were being used for 596 patients (1.2 per 100,000 total population) at the survey date in 1999, and use had been increasing steadily since its introduction. The order is not systematically considered for all potential cases. The majority of the 182 patients in the cohort had complied, if sometimes intermittently, with conditions of the order. Conclusions: For patients compliant with SDOs, the pressures necessary to treat effectively need not involve powers to enforce medication compliance.

The effect of disclosure of mental illness by interviewers on reports of discrimination experienced by service users: A randomized study

User involvement in research is widely valued, but evidence of its impact in quantitative research is lacking. We investigate whether survey responses are affected by interviewers’ experience of mental health problems. We hypothesized that when the interviewer has experienced mental health problems, participants would be more likely to consent to participate, leave fewer items unanswered, report higher levels of discrimination and express greater satisfaction with the interview. The study was nested within a telephone survey of service users’ experiences of discrimination. Participants were randomly assigned to three groups: peer disclosing, peer non-disclosing and non-peer interviewers, where ‘peer interviewers’ have personal experience of mental health problems. Analyses explored the impact on response rate, number of unanswered questions, reported discrimination and interview experience. No difference was found in prevalence of discrimination reported to interviewers. A significantly lower response rate was attained in the peer-disclosing group (5% compared to 6.5%, p = 0.005). Significantly fewer questions were left unanswered in the peer-disclosing group (Mean = 0.07 compared to 0.4, p = 0.004). Findings suggest that interviewers’ experiences of mental health problems broadly do not impact on quantitative data collected in structured interviews about discrimination. Disclosure of peer status prior to consent may have affected recruitment.

Discrimination against people with a mental health diagnosis: qualitative analysis of reported experiences

Abstract Background: Discrimination towards people with a mental health diagnosis has public health implications. Recently, efforts have been made to tackle discrimination through campaigns and education. Understanding experiences of discrimination is vital in targeting efforts effectively. Aims: The study aimed to explore experiences of reported discrimination described by service users in a national survey in England. Method: Structured telephone interviews were conducted with 537 mental health service users, randomly selected from five National Health Service Trusts in England. Interviews asked about experiences of discrimination in different life areas. Twenty-three interviews were audio-recorded and qualitatively analysed to develop a typology of discrimination experiences. Results: We identified seven types: organisational decisions; mistreatment; social distancing; stereotyping; lack of understanding; dismissiveness; and over-protectiveness. Conclusions: Discrimination should be understood as occurring within social relationships and influenced by expectations of contact within these relationships. A better understanding of these processes can help target more effective messages in anti-discrimination campaigns.

Implementing personalisation for people with mental health problems: a comparative case study of four local authorities in England

Background Enhancing choice and control for people using services is a mental health and social-care service priority in England. Personalisation is a new policy and practice for delivery of social-care services where eligible adults are allocated a personal budget to spend to meet their agreed support needs. Aims To describe approaches to introducing personal budgets to people with severe and enduring mental health needs, and to identify facilitators or barriers encountered. Method Within four English local authority (LA) areas, purposively selected to provide maximum variation, semi-structured interviews were undertaken with 58 participants from LAs, NHS trusts and third-sector organisations. An Interpretive Framework analysis considered within- and across-site insights. Results Issues arising from the implementation of personalisation for people with mental health needs are presented under two general themes: “responsibility and power” and “vision and leadership”. Key challenges identified were complexities of working across NHS and LAs, the importance of effective leadership and engagement with service user representatives. Conclusions Implementing personal budgets in mental health requires effective engagement of health and social-care systems. Change processes need strong leadership, clear vision and personal commitment, with ownership by all key stakeholders, including front-line practitioners.

Viewpoint survey of mental health service users' experiences of discrimination in England 2008-2014.

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.

Acceptability of compulsory powers in the community: the ethical considerations of mental health service users on Supervised Discharge and Guardianship

Objectives: To explore mental health service users’ views of existing and proposed compulsory powers. Design: A qualitative study employing in-depth interviews. Participants were asked to respond to hypothetical questions regarding the application of compulsory powers under the Mental Health Act 1983 for people other than themselves. Setting: Community setting in Southeast England. Participants: Mental health service users subject to Supervised Discharge/Guardianship. Results: Participants considered that the use of compulsory powers was justified if there were some ultimate benefit, and if there was evidence of mental health problems, dangerousness, or a lack of insight. However, participants rejected intrusions into their autonomy and privacy. Conclusions: This paper’s participants indicated that the proposed CTO may be unacceptable because it would threaten service users’ autonomy. Service users’ acceptance of proposed changes is conditional and they emphasised the importance of consent; there is no suggestion that consent will be required for the CTO. The findings also have implications for the exploration of mental health service users’ views and how they might contribute to policy, service planning, and research.

Qualitative analysis of mental health service users' reported experiences of discrimination.

To better understand mental health service users’ experiences of stigma and discrimination in different settings.