The Scottish Government

« Previous | Contents | Next »

Listen

EXECUTIVE SUMMARY

Background

1. According to the World Health Organisation ( WHO) "The single most important barrier to overcome in the community is the stigma and associated discrimination towards persons suffering from mental and behavioural disorders" ( WHO, 2001, p. 98). International research, as well as studies undertaken in the UK, reveal the extent of these negative attitudes and the very real impacts these have on the lives of people with mental health problems, on their families and those close to them (Glendinning et al, 2002; Braunholtz, et al, 2004; Braunholtz, et al, 2007; Manning and White, 1995; Payne, 2000; Read and Baker, 1996; Thornicroft, 2006).

'see me'

2. To address the negative attitudes and behaviours which systematically disadvantage people with mental health problems and those close to them, the 'see me' campaign was launched in October 2002, with the purpose of tackling the stigma and discrimination experienced by people with mental health problems. Funded as part of the Scottish Executive's ¹ National Programme for Improving Mental Health and Wellbeing ('the National Programme'), but managed by an alliance of five mental health organisations, the campaign has encompassed: national level publicity campaigns targeted at the general population; targeted publicity campaigns aimed at specific groups or environments through its young people and workplace strands; work with the media; and support for local activity through the provision of materials, advice and guidance.

3. The 'see me' campaign had five core objectives:

• To tackle stigma and discrimination by raising public awareness of how both affect individuals with mental health problems, and by improving public understanding of mental health
• To challenge individual incidents of stigma and discrimination
• To involve people in anti-stigma activities across Scotland at national and local levels and across sectors and communities of interest
• To ensure that the voices and experiences of people with mental health problems and their carers are heard
• To promote a culture of learning and evaluation through all its work, so that effectiveness can be demonstrated and lessons shared.

4. The campaign was initially conceived by an alliance of mental health organisations: the Scottish Association for Mental Health ( SAMH), the National Schizophrenia Fellowship (Scotland), the Royal College of Psychiatrists (Scottish Division), Penumbra and Highland Users Group. This group continues to provide the strategic management for the campaign. Operationally, 'see me' is run by a small staff team, comprising, at the end of the period covered by the evaluation, eight people. The operational team work closely with a communications agency which undertakes the creative design work and public relations activity.

5. The name 'see me….' came from comments made in the course of a campaign focus group. The four dots represent the statistic that one person in four will experience a mental health problem at some point in their lives.

Aims and objectives of the evaluation

6. This report presents the findings from an independent 15-month evaluation of the first four years of the campaign. The aims of the evaluation, which started in September 2006 and was commissioned by the Scottish Executive, were to:

• Co-ordinate a detailed account of the development and activities of 'see me'
• Determine the extent to which the campaign has met its own strategic objectives
• Make recommendations for the future development of anti-stigma work in Scotland.

7. The evaluation had five objectives:

• To examine how the campaign was established, funded, the infrastructure developed and activities decided upon; and what factors affected ongoing development and the focus of activities over time
• To assess effectiveness to date of the various strands of the publicity campaign (general public, young people and workplaces) in terms of reaching the target audience, raising awareness about stigma and discrimination, and changing attitudes towards people with mental health problems
• To assess whether and how the practice of media professionals had changed in relation to the reporting of mental health issues since the launch of the 'see me' campaign
• To explore the experiences of 'see me' media volunteers in relation to their involvement in the campaign
• To identify and consider ways in which anti-stigma and discrimination work could be taken forward in Scotland, including what the key objectives and activities should be and where such work might be hosted, through consultation with key stakeholders.

Evaluation methodology

8. To meet these aims and objectives, the evaluation used a combination of primarily qualitative methods. These included documentary analysis, face-to-face and telephone interviews, workshops and surveys. The participants represented a broad range of actual or potential stakeholders, including the 'see me' management group, operational team and communications agency, Scottish Government stakeholders, other National Programme delivery vehicles, 'see me' media volunteers, media professionals, agencies working with different equalities groups, statutory bodies, service users and carers, voluntary organisations and other organisations and agencies with a role in helping to tackle the stigma and discrimination experienced by people with mental health problems.

9. The number of other mental health related initiatives running in parallel to the implementation of 'see me' make it difficult to definitively attribute changes in attitudes (in any direction) to the campaign itself. Further, although the range of stakeholders was extensive, the number interviewed within these different groups was comparatively small. These limitations were however, counterbalanced by the strengths of the approach adopted: in particular the wide range of different organisations and agencies included in the process and the range of different methods employed. The findings and the conclusions therefore emerge from an extensive data source, encouraging confidence in the evaluation's conclusions.

Structure of the report

10. Chapters one to three of the report provide background contextual information, covering: understanding stigma and discrimination, the policy context, and the 'see me' strategy ( Chapter one); the aims and objectives of the evaluation ( Chapter two); and the evaluation methodology ( Chapter three).

11. Key findings and commentary can be found in Chapters four to nine. Chapter four presents the background and strategic development of 'see me'. Chapter five discusses the operational development of 'see me'. Chapter six describes the campaign in practice. Chapter seven considers the relationships 'see me' has with other stakeholders. Chapter eight illustrates how 'see me' works with the media. Chapter nine presents the experiences and views of users and carers who participated in the evaluation. Chapter ten assesses the effectiveness of the 'see me' campaign, as measured by its own five strategic objectives. Chapter eleven presents views on the future direction for work in Scotland addressing stigma and discrimination experienced by people with mental health problems and those close to them.

12. The conclusions drawn from the evaluation are presented in Chapter twelve and recommendations arising from the study findings are presented in Chapter thirteen.

Main findings

The background and strategic development of 'see me'

13. The four and subsequently five organisations which came to form the campaign management group identified stigma as an area in which they shared a common interest, and one which had been flagged up in the review of the Mental Health (Scotland) Act 1983 as needing to be addressed.

14. The campaign proposal was initially developed by this alliance of organisations, who then brought the proposal to the Scottish Executive. Following discussion and negotiation over a number of months the campaign came to form one part of the newly formed National Programme. This early development gave the campaign its strong internal cohesion, as well as a sense of relative autonomy from the Scottish Executive.

15. The campaign was funded through the Scottish Executive. Documentary and interview material suggests that aspects of the campaign surrounding the ability of 'see me' to support developments at local level were perceived to have been limited by funding constraints.

16. The core aim of the campaign was to eliminate stigma and discrimination. The campaign's five objectives evolved over time influenced by the knowledge and expertise of the management group, Scottish Executive imperatives and knowledge accruing from the field.

17. To meets its aims and objectives the campaign has taken a general population approach informed by a model of a 'journey', moving people from raising awareness to changing attitudes to effecting behaviours. This model of change determined the initial emphasis on stigma - on challenging ignorance/lack of understanding and negative attitudes, rather than discrimination in terms of behaviours. The one area where the focus was more directly on effecting behaviour change was through the campaign's work in challenging negative media portrayals of people with mental health problems.

18. To achieve its strategic objectives, the campaign has drawn on a social marketing model coupled with a community development approach for mobilising support and buy-in. The social marketing process has been influential in informing the direction and focus of the campaign.

19. The campaign management group comprised representatives from the five organisations which formed the original alliance. Strategically the value of this model was that it brought links to a range of different stakeholders. Operationally the small number of representatives on the group, and the consistency over time, enabled the group to cohere. It also encouraged greater understanding and dialogue between the organisations represented. Conversely, it has meant that only a comparatively narrow range of organisations are represented, potentially limiting the involvement of other equalities bodies, or agencies with a remit beyond mental health to support the process of "transformational change".

20. Three streams fed into the decision-making process; the within-group knowledge and expertise of the management group; 'bottom up' intelligence from the market research process and through contacts with the field; and 'top down' from the Scottish Executive as funder. The three streams informed each other and together, influenced the evolution of the campaign over time.

21. In terms of external accountability processes, the Scottish Executive and those involved in the campaign valued its relative autonomy. At the same time this relative freedom raised governance issues in terms of ownership and control over the message and the mode of its delivery.

22. In terms of internal accountability one issue to emerge was in relation to the boundaries between responsibility for strategic, creative and operational decision-making in determining the direction and look of the different campaign strands. A balance had to be found between a respect for the process of consultation undertaken in the course of campaign development and issues of accountability for the outcomes. The solution arrived at was for the 'see me' operational arm to be responsible for developing the creative approaches but for the management group to ensure that it saw, contributed to and signed off the outputs from this process.

Progress towards meeting its strategic objectives

23. A key aim of the evaluation was to determine the extent to which 'see me' had met its own strategic objectives over the period 2002-2006 and identify the barriers and facilitating factors. The following summarises the findings in relation to each of these five objectives.

Objective 1. To tackle stigma and discrimination by raising public awareness of how both affect individuals with mental health problems, and by improving public understanding of mental health

24. National surveys and surveys commissioned by 'see me' over the period 2002-2006 revealed positive shifts in mental heath awareness and in attitudes towards mental health problems. The number of other related initiatives over this period make it difficult to determine 'see me''s specific contribution, but the data may suggest the value of a number of different initiatives working in parallel to effect change.

25. The surveys also indicated the high levels of campaign awareness, with over one-third of the population surveyed in 2006 aware of the 'see me' name. Awareness was particularly high among people with direct experience of mental health problems.

26. 'see me' commissioned a pre and post-campaign 'tracking survey' for the young people's campaign strand. This revealed that half of the young people surveyed were aware of the campaign. The post-campaign survey also suggests that there were some positive changes in expressed attitudes towards people with mental health problems.

27. Qualitative data collected in the course of the evaluation suggests that among those interviewed awareness of the 'see me' campaign was high and the perceived impacts positive. These impacts included a perceived greater willingness for people to talk about mental health problems. At professional or organisational level, it was suggested that 'see me' had contributed to increasing mental health awareness. The campaign was also seen as having a 'galvanizing' effect across the mental health community in Scotland.

28. The perceptions of those interviewed also raised a number of questions which have implications for on-going work to tackle the stigma and discrimination experienced by people with mental health problems. First, it was suggested that the quality of the campaign and the recognised expertise vested in 'see me' may have had the unintended consequence of deferring responsibility for anti-stigma work to the campaign, rather than embedding it within agencies and organisations. Second, despite the high profile of the campaign, those interviewed questioned the extent to which it had been able to reach beyond the environments of the willing or already sensitised. Third, although the campaign itself sought to be inclusive, the perception among those interviewed was that it was not sensitive to the diversity of the population, including people who may be subject to multiple sources of discrimination. Fourth, a number of participants raised the question whether a public relations campaign alone could lead to a deeper understanding. Their view was that the campaign needed to be followed through with a 'call to action'. Related to this was the concern that the staged approach adopted by the campaign, based on the assumption that it takes a generation to achieve change, leaves unresolved the stigma and discrimination currently being experienced.

Objective 2. To challenge individual incidents of stigma and discrimination

29. For 'see me' this objective relates to negative representations of mental health in the media. In terms of affecting media reporting, the Stigma Stop Watch process demonstrated some successful outcomes. Media volunteers felt that they had been able to affect a shift in the way the media presented mental health related stories. Across the range of different stakeholder groups interviewed in the course of the evaluation there was a perception that media reporting in Scotland had improved, compared with that in England. This is tentatively supported by the findings from a brief content analysis, to the extent that positive reporting had increased during the period sampled.

Objective 3. To involve people in anti-stigma activities across Scotland at national and local levels and across sectors and communities of interest

30. As revealed by the NHS Board area survey and through interviews, an extensive range of organisations, agencies and individuals had become involved in the campaign. This was either through proactive contact on the part of 'see me', or through local organisations or agencies making contact with the campaign. This breadth of local 'see me' related activity had been established in spite of the fact that the campaign had not been funded to develop a network of local co-ordinators. To develop this network of local activity 'see me' had adopted an 'open door' approach to developing contacts, prioritising localities or organisations who indicated an interest and commitment to working with them. This may have meant, however, that the campaign's reach to date did not extend to some of the harder-to-reach environments, for example trade unions.

31. The survey responses suggest that without input from 'see me' a number of anti-stigma activities would not have happened. The campaign's input also helped to progress existing activities. Responses from the NHS Board survey and local area workshops suggest that partnerships between 'see me' and others could enable organisations to build on the PR profile and materials 'see me' has developed, and enable the campaign to build on local and organisational anti-stigma action. This joint activity was felt to have raised the profile of the stigma experienced by people with mental health problems to a level that would not have been possible on a local basis alone.

32. The NHS Board area survey revealed the different partnership arrangements in place to deliver local anti-stigma activity. In part these differences reflected local circumstances, but they also revealed the different factors that could act as barriers to, or facilitators of, local level activity. These factors included funding availability, local policy priorities, management or strategic buy-in, and staff capacity.

Objective 4. To ensure that the voices and experiences of people with mental health problems and their carers are heard

33. Whether as media volunteers and/or as participants in campaign design and implementation, 'see me' sought to develop mechanisms for giving a voice to users and carers. The membership of the pool of media volunteers was based on meeting the needs of the media and specific campaign launches at any time, rather than aiming to be representative of people with mental health problems more generally, as recruiting and training individuals for whom there is not demand generates false expectations and potential disappointment. Nevertheless, the scope for broadening the pool of volunteers to include those from different communities of interest and geographical communities was suggested by some evaluation participants.

34. In terms of campaign development, the data suggest a necessary and ongoing tension at the heart of 'see me', between the need to ensure the views of users and carers about stigma and the campaign are taken into account, while at the same time developing an effective campaign which targets a different, non-specialist audience to effect change.

35. The NHS Board survey and workshops suggest that at local level many activities involved users, and some involved carers, but this was not universal across Scotland.

Objective 5. To promote a culture of learning and evaluation through all its work, so that effectiveness can be demonstrated and lessons shared.

36. 'see me' has a strong within-campaign culture of research and evaluation. This included pre-campaign strand research and post-campaign strand evaluations of reach and recall. The campaign also sought to make its research available to others. There was, however, less evidence of this culture having extended to local areas.

Views on the future direction for work in Scotland to address the stigma and discrimination experienced by people with mental health problems

37. Across the different phases of the evaluation respondents were asked to give their perspectives on the future direction for work in Scotland to address the stigma and discrimination experienced by people with mental health problems. The themes which emerged reflect the perceptions and experiences of the wide range of organisations and agencies included within the evaluation. They may, however, not necessarily mirror what 'see me' sees as its role and remit or be a reflection on, or of, what 'see me' had undertaken to date.

38. In terms of the focus for future action, across those interviewed there was recognition of the different social processes underlying stigma and discrimination, but less clarity about the implications of these different processes for future action.

39. In developing its general population approach, 'see me' had sought to be as inclusive as possible. Comments from the field, however, suggest that the heterogeneity within and across different geographical communities and communities of interest may require a combination of both population and targeted approaches.

40. A number of groups were identified as potential future targets, both in terms of awareness raising, but also as comprising people at risk of experiencing stigma and discrimination because of a mental health problem. These groups included children and young people, people from black and minority ethnic communities and families. Although 'see me' had targeted the workplace as a major campaign strand, the perception was that this was also an area for future targeting, together with NHS services.

41. In terms of the types of actions required, respondents described the need for multi-dimensional approaches including legislation, tools and resources and positive reinforcement. Future approaches also needed to be multi-layered: at the macro level of government and government policy, at the middle-range level of local areas/organisations and at the level of individual practice.

42. Whether at local or national level, the view was that action needed to be integrated with the mental health service and mental health improvement agendas, wider human rights/equalities agendas and integrated across and within sectors. For those interviewed, integration also implied partnership working, including with people with lived experience and with a range of different stakeholders. This included ensuring different agencies/organisations recognised that they did have a stake in this agenda.

43. To sustain the gains made, participants suggested that there was a need not only to embed and integrate activities to address the stigma and discrimination experienced by people with mental health problems within and across other agenda, but also to maintain a specific mental health focus and for a mental health specific champion or figurehead such as 'see me', to give continued leadership, direction and impetus.

Conclusions

44. 'see me' is a groundbreaking campaign, responding to long standing concerns within the mental health community in Scotland that action needed to be taken to address stigma. It is also a high energy campaign generating a breadth of activities. A number of factors have, however, made it difficult to assess the specific extent to which 'see me' has met its own aspirations: the qualitative and broad-based nature of the campaign's objectives make it difficult to accurately measure and also to attribute change; attribution is also muddied by the 'repertoire' effect of a number of different mental health related initiatives coming on stream over the period 2002-2006. Nonetheless, it is possible to draw out a number of themes suggestive of the campaign's effectiveness over this time period.

45. The 'see me' campaign has been critical in drawing attention to the stigma and discrimination experienced by people with mental health problems. It has also given a high-level profile and identity to activities aimed at increasing mental health awareness and it has been important in creating a background 'noise' around these issues, to which other initiatives can add within their own contexts. Issues for the future include further consideration of issues of equality and diversity in campaign targeting, design and delivery; and the need to consider ways for addressing discrimination, not just at an individual level, but also as it is embedded in the processes and practices of organisations and agencies. The complexity of achieving changes not just in expressed attitudes, but also in behaviours also suggests not just a long-term process but actions at a number of different levels and drawing on a range of approaches.

46. In terms of media reporting, the campaign has had an important role in creating an environment in which it becomes increasingly unacceptable to use derogative terms or negative story lines. This has included supporting individual complaints to the Press Complaints Commission about derogatory high profile stories, leading to changes in the behaviour of the press and of advertising companies and challenging remarks made by public figures.

47. The campaign has encouraged a breadth of local activity. Developing an approach of 'knocking on open doors' has been productive in the early stage, but different processes of engagement may need to be considered in those areas still behind 'closed doors'.

48. 'see me' has sought to give a voice to users and carers. At local levels user and carer involvement is variable. This may suggest scope for 'see me' to support and encourage greater user and carer involvement at local area level.

49. The campaign has developed a strong within-campaign culture of learning and evaluation. This has not yet trickled down to local areas. There may be potential for 'see me', working in partnership with other relevant agencies and organisations, to encourage a similar culture at local levels.

50. The experiences of participants in local areas suggest certain factors within 'see me''s environment may have limited realisation of its own objectives. These include the level of campaign funding, which may have meant some activities have not been developed. The funding levels may also have created a tension between providing a national campaign and supporting developments at local level. Consideration may need to be given to the capacity required to maintain both a high level national campaign, together with local community development work.

51. Factors within the campaign that have supported the realisation of its objectives include: a clear sense of purpose and direction, strategically and operationally; its professionalism, skills, expertise; and its relative independence from the Scottish Executive, giving it a credibility and freedom of action that may not have been available to a more centrally controlled campaign.

52. To sustain the gains that 'see me', together with its partners at local and national level have achieved, requires a strategic approach involving all agencies and bodies who have remit and responsibility for tackling discrimination and stigma. This should place 'see me' at its heart to provide leadership while also encouraging others to take responsibility for overcoming the inequalities and systematic exclusions people with mental health problems continue to experience.

Recommendations for the future development of actions to address the stigma and discrimination experienced by people with mental health problems

53. The refocusing on inequality and discrimination underpinning a number of Scottish Parliament and Scottish Government initiatives launched since 2006 suggests that now is an opportune moment not only to reflect on the future strategic direction for 'see me', but also to locate action to tackle the stigma and discrimination experienced by people with mental health problems within a broader based framework.

54. The work of 'see me' has revealed the complex dynamics that underpin stigmatising attitudes and discriminatory behaviours as well as the outcomes of these processes as they affect people with mental health problems. Research by 'see me' and by other agencies has also helped to illustrate how these attitudes and behaviours expose people with mental health problems to social and economic exclusion, and how, in turn, exclusion and disadvantage are detrimental to mental health and well-being.

Promoting fairness and equality for people who experience mental health problems means addressing the stigma and discrimination both at the level of individual attitudes and behaviours, and at the wider structural level

55. This suggests the need for approaches that differentiate more sharply between the processes resulting in stigmatising attitudes and those processes resulting in discriminatory behaviour. As a corollary, this points to the need for a broader base framework to use a 'bundle' of approaches to address both stigma and discrimination at different levels simultaneously, rather than sequentially or separately. This work can be pursued within a broader inequalities and human rights framework.

The active engagement of other agencies, organisations and policy areas to integrate an understanding of the stigma and discrimination experienced by people with mental health problems within their own 'domains' and take responsibility for appropriate remedial action

56. In the next phase 'see me' would remain one valued part of a wider programme of work, playing an enabling role, supporting others in striving towards common objectives. To support 'see me''s facilitative role there needs to be greater, shared clarity about the respective roles of the campaign and of other agencies and organisations and how these inter-relate.

A multi-dimensional approach is needed with supporting action at policy and legislative levels, but also through the development of interventions and approaches, tools and resources

57. In addition, future action needs to be multi-layered to comprise developments within and across policies at national level; developments at local level and within organisations and institutions; and developments at the level of individual awareness raising or training.

The focus for this future work should be informed by the evidence base and include:

• Targeting those environments where the greatest 'injury' may be sustained
• Targeting action on those groups whose exposure to stigma and discrimination may have an impact on their mental health and well being
• Targeting those groups where the evidence base suggests opportunity for positive change.

58. There is clearly a continued need to maintain a high level national campaign able to provide a focal point, keep the issue high on the "radar", and act as a resource for people to learn from and draw upon. However, the complexity of the issue suggests that the next stage requires broadening out responsibility, so that the stigma and discrimination experienced by people with mental health problems is more sharply integrated into actions to tackle fundamental sources of inequality.

A three-tiered model of change

59. To inform this strategic approach and drawing on a health improvement paradigm, a three-tiered model is proposed . This model encompasses: primary level awareness raising of stigma and discrimination; secondary level prevention of stigma and discrimination; and a tertiary level of more direct action such as recourse to legislation to address instances of stigma and discrimination. Each tier is distinguished in terms of the focus for action and in terms of the roles and responsibilities of the key players.

60. As a first step, opportunities should be made available to establish a forum for dialogue between different agencies and organisations to further progress this agenda for change.

ABBREVIATIONS

« Previous | Contents | Next »