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CHAPTER ELEVEN VIEWS ON THE FUTURE DIRECTION FOR WORK IN SCOTLAND TO ADDRESS THE STIGMA AND DISCRIMINATION EXPERIENCED BY PEOPLE WITH MENTAL HEALTH PROBLEMS
Introduction
11.1 Across the different phases of the evaluation respondents were asked to give their perspectives on the future direction for work in Scotland to address to address the stigma and discrimination experienced by people with mental health problems. This included views on: the emphasis to be given in future work in relation to stigma, self-stigma and discrimination; target groups and target settings; mechanisms and structures for future action; and sustainability. The themes emerging 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' has undertaken to date. These views have been drawn upon to inform, but do not constitute the draft recommendations, which are set out in Chapter 13.
Future focus: stigma and discrimination
11.2 In phases 1, 2 and 3 people who took part in interviews were asked whether they drew a distinction between stigma and discrimination, and, if so, whether different approaches were required to tackle each. Across the different groups of people interviewed, the common view was that, although different, stigma and discrimination were linked. Stigma was seen as largely about attitudes or beliefs. These attitudes and beliefs were assumed to be based on fear and "worry". This sense of anxiety was felt to result from a lack of, or inaccurate, knowledge, including the misconceptions that people with mental health problems lack competence and/or are "odd". Fear could also derive from a sense of 'threat' based on an assumption of unpredictable or violent behaviour, or from a sense that "it could be me". One interviewee drew the comparison between attitudes to people with physical illnesses and those with mental health problems. In relation to the former the attitude tended to be the more patronising one of "it's a shame". People with mental health problems however, were viewed as bringing "shame" upon themselves.
11.3 For people with experience of mental health problems the internalisation of the negative attitudes of the wider community, coupled with the fear or actual experience of exclusion or rebuff, contributed to self-stigma.
11.4 The point was made that beliefs were not held in isolation, but were shared, particularly with peers. The view was that individuals changed their attitudes (for good or ill) if they found these attitudes were out of kilter with those of their peers. It was suggested that currently while there remains a sense of community sanction against people who experience mental health problems, there is no equivalent sanction against those who articulate stigmatising views against this group of people.
11.5 This 'community sanction' against people with mental health problems was linked to, or a precursor of, discrimination i.e. behaviours of exclusion. Several of those interviewed suggested that while stigma is pernicious it becomes particularly so if those holding stigmatising attitudes are also in positions of power or authority act on these attitudes.
11.6 While recognising different processes at work in relation to stigma and discrimination, it was not clear from the responses that people had fully worked through the implications of these differences for action. Nonetheless the view was expressed that if the processes underpinning stigma and discrimination were undifferentiated something might get "lost". While it may be possible, for example, to begin to address 'stigma', people with mental health problems could still find that their opportunities are unfairly limited because of the ways organisations operate.
11.7 As will be returned to in Chapter 13 below, what this also begins to suggest is the need for a more sophisticated conceptualisation of the structural processes of discrimination, which may differentially disadvantage people with mental health problems.
Future target groups and target settings
A whole population and/or a targeted approach?
11.8 Among evaluation respondents there were different views on the relative advantages or disadvantages of taking a population as opposed to a 'targeted' approach. 'Targeting' was used in three different ways: to refer to actions to tackle the stigma and discrimination experienced by those groups of people felt to be particularly exposed to negative attitudes and behaviours, such as those with a particular diagnosis; actions aimed at particular population groups to address potentially stigmatising attitudes and/or improving mental health awareness; actions aimed at settings or contexts where stigmatising attitudes may be "institutionalised" in processes or practices. Clearly there are overlaps between these different dimensions; particular groups, for example, could be both recipients and perpetrators of stigmatising attitudes. Self-stigma, too, cuts across these different dimensions.
11.9 The 'see me' campaign has initially employed a population wide approach, designed to raise awareness and to challenge stigmatising attitudes in the public as a whole across Scotland. There was support from outwith 'see me' for this approach, particularly as a first phase of a campaign to prime the public in general about this issue. It was also suggested that if what was required was widespread culture change, as opposed to pockets of individual change, then the whole population approach was appropriate both now and in the future.
11.10 Arguments were, however, also put forward as to why a population wide approach alone would not achieve changes in attitudes and behaviours. First, it was recognised that there is not just one homogeneous culture in Scotland and that different "subcultures" exist within communities, localities and organisations. Consequently, a population wide approach risked being too broad-brush and could overlook these nuances within Scottish society. It was also recognised by evaluation participants that there can be different experiences, views, belief and value systems within communities and settings, for example between older and younger people within particular black and minority ethnic communities. There may, therefore, be a need to develop a range of approaches to reflect within target group differences, to ensure inclusiveness.
11.11 Second, it was felt by participants that stigma was not equally distributed throughout Scotland, and that there were sectors and settings where stigma was more keenly felt, or that were viewed as a higher priority for targeted action to effect change in attitudes and behaviours. A number of these target sectors and groups had been identified by 'see me' themselves through their consultation work, such as children and young people and workplaces, and had resulted in specific campaigns using these themes as a focus.
11.12 Insofar as future actions took a 'targeted' approach along any of the three dimensions described above, it was recognised that this needed to be evidence-based. This supports the need for evaluation and research at local and national levels and mechanisms for sharing and learning 'what works', as discussed in Chapter 10.
11.13 Overall, what seems to emerge is a perceived continued need for evidence based population-wide and targeted approaches to maximise the impacts of anti-stigma and discrimination activity.
Future target groups
11.14 Participants in the evaluation highlighted a number of specific target groups that they felt 'see me' could consider prioritising in the future. Some of these were suggestions about how to further the work with existing target groups identified in earlier stages of the campaign, such as children and young people. Others were suggestions for how 'see me' could reach out to new target groups that were viewed to be of importance. The main groups identified for continuing or future 'targeting' include children and young people, people from black and minority ethnic communities and families. Although respondents referred to 'see me''s role in undertaking anti-stigma and discrimination activities in relation to these identified groups, it is recognised that they may not all fall within 'see me''s remit. The potential roles and responsibilities for 'see me' and for other sectors in the future are mapped out in Chapter 13.
Children and young people
11.15 Children and young people have been consistently viewed as a priority target group both by the 'see me' campaign and by the National Programme as a whole. On the basis that it takes a generation to change attitudes, interviewees at local and national level argued for the continued need to work with this age group. In this way it was felt that 'see me' would be investing in future adult attitudes and behaviours towards mental health and mental health problems.
11.16 More than that however, children and young people were also viewed as populations that were currently susceptible to stigmatising attitudes, both as recipients and perpetrators. It was advocated that anti-stigma work should be based in school settings, and start from an early age.
11.17 In terms of the broad themes to cover with this group, some participants felt that the issues of self harm and eating disorders covered by 'see me' to date were appropriate and significant. Others suggested that the focus could be broadened out so that children and young people were aware of the impacts of stigma and discrimination on people who experience other forms of mental health problems.
11.18 It became clear that it was thought important that challenging stigma with young people involved not only campaigning action, but also a move towards direct interventions to raise awareness of mental health, and support the development of emotional resilience. This is beyond 'see me''s remit, but reinforces the importance of the work being undertaken by other National Programme delivery vehicles such as Scottish Mental Health First Aid.
BME communities
11.19 It was recognised by 'see me' and external agencies that making the campaign appropriate for BME communities was an important issue. Again, this 'targeting' implied action to address the experience of stigma and discrimination experienced by people from BME communities who have mental health problems, (including the "double whammy" of experiencing both racism and stigma related to mental health problems) and to target potentially stigmatising attitudes towards people with mental health problems within different communities.
11.20 As discussed in Chapter 10, although the campaign had contact with BME communities through a number of initiatives, it was agreed with representatives from BME communities, including the NRCEMH, that 'see me' would not run a specific BME anti-stigma campaign, but rather would put resources into finding out more about the specific ways in which mental ill-health and stigma were experienced by different BME communities. Therefore, 'see me' contributed funding and resources to Glasgow Anti Stigma Partnership's 'Mosaics of Meaning' research project, which is intended to provide a platform for further activity by 'see me' and partners.
Families
11.21 One criticism of the campaign materials issued over the period covered by the evaluation was that, by and large, they were not felt to consider individuals with mental health problems in the context of the wider families in which they lived. Families had the potential to be supportive and open about mental health, or could be dismissive and critical of those near to them with mental health diagnoses. Families, particularly children, could also be recipients of stigmatising attitudes and behaviours, based on their parents' mental health problems.
11.22 Among those interviewed, part of the solution to this problem was felt to lie in equipping family members with reliable information about mental health problems, which could help them to understand the reasons for certain behaviours, and to challenge some of the negative stereotypes others may hold. This is outwith the current remit of 'see me', (although the campaign has prepared factsheets on different mental health problems), but does flag up a role for other agencies in terms of providing information to support family members.
Future target settings
Workplaces
11.23 Workplaces have been highlighted as an important focus for anti-stigma work since the inception of the 'see me' campaign. As well as the Employment and Workplace campaign strand, 'see me' has worked with individual employers including ASDA, Standard Life, various NHS Boards and local councils amongst others (see Chapter 7).
11.24 Among those interviewed it was suggested that employers and workplaces should continue as priority as it was felt that there was still a long way to go in terms of addressing stigma and discrimination towards people with mental health problems in the workplace.
NHS Services
11.25 The NHS was identified as an early target for an anti-stigma campaign before the launch of 'see me'. Since then it had been raised as an important target in consultations and focus groups run as part of the campaign development process. It was recognised both through these processes, and through evaluation interviews that the NHS could be experienced as or perceived to be stigmatising both as an employer, and as a provider of support to people with mental health problems. As a provider, there was, it was claimed an "institutional stigma", built into processes and practices that neither empowered individuals nor supported recovery.
11.26 'see me' had sought to integrate the NHS within the Employment and Workplace campaign strand. Work had also been undertaken with a number of NHS Boards to raise awareness of stigma and encourage action to challenge stigmatising attitudes and behaviours amongst staff. However, it was widely felt by those interviewed in the course of the evaluation that increased emphasis needed to be placed on challenging stigma within the NHS as a whole, and particularly within NHS settings that people with mental health problems were likely to come into contact with, such as mental health services, A&E and primary care.
11.27 It was recognised that approaches to challenge stigma in the NHS should be broached with some sensitivity, so as not to "slap down" professions that were already experiencing problems with morale. However, it was also argued that to have any impact on the culture of the NHS as a whole, buy-in at a strategic level and purposeful action to address stigma would be important. To begin to effect this change in culture and behaviours within the mental health service system, Delivering for Mental Health (Scottish Executive, 2006b) includes as its first commitment the objective of developing a tool to assess the degree to which organisations and programmes meet expectations in terms of equality, social inclusion, recovery and rights.
11.28 Tayside and Lanarkshire had also included anti-stigma training within the course content of medical and nursing degrees. It was thought that breaking down stigmatising attitudes before individuals enter the medical professions would contribute to changing the culture in the NHS in the future.
Mechanisms and structures
11.29 From the interviews the mechanisms and routes for targeting actions to address stigma and discrimination need to be multi-layered and multi-dimensional.
A multi-dimensional approach
11.30 Suggestions drawing on legislative frameworks included actions to reinforce the fact that disability discrimination legislation also covers people with mental health problems. It was also argued that consideration needed to be given to making the harassment of people with disabilities not just a 'moral' but also a legal wrong. One participant proposed that tougher action was required to prevent the use of inflammatory language, particularly in the media.
11.31 Although people felt there continued to be a need for the "big stick" of legislation, this should only be "20%" of the solution. A legislative framework provided principles and set out expectations, but too much emphasis on legal measures could be counter-productive. The view was that the emphasis had to be on the "carrot" of positive endorsement and actions.
11.32 In terms of concrete actions, several respondents argued that to get employers to pursue the employability agenda and enable people with mental health problems to return to work, it was necessary to develop the business case and target the 'bottom line'. Other tools and resources proposed were the development of support packages to enable people to stay in work or to return to work more quickly. A further 'resource' was the development of training and education packages targeted at front line staff to tackle stigma and discrimination.
11.33 The value of positive reinforcement and modelling of appropriate behaviours was suggested by a number of those interviewed. This included the need for demonstrable top-level buy-in within an organisation, not just to champion anti-stigma and discrimination work, but also to give legitimacy and authority to this agenda, and to 'model' appropriate behaviours to support change among those working at the front line.
Multi-layered approaches
11.34 At a macro level, participants felt that it was important to keep or place the anti-stigma and discrimination message, as it related to mental health problems, high on the government's policy agenda, and also for this message to be embedded across different policy agenda. One respondent, for example, (speaking before the elections in May 2007) argued that, because of its impact on well-being, it should be top of the First Minister's agenda. Another respondent was looking for a "bold statement" about stigma and mental health from the Scottish Executive.
11.35 It was also felt that action needed to be taken at the meso-level of local areas, agencies, organisations and employers. Local level action included the need for "buy-in" from Community Health Partnerships, Community Planning Partnerships and NHS Boards, but it was suggested that local work needed to be supported by funding. To address the perceived discrimination and stigma embedded within institutional processes and practices, however, it was argued that agencies and organisations needed to take greater responsibility for addressing the stigma and discrimination experienced by people with mental health problems. In relation to public authorities in particular, it was felt that there needed to be greater public accountability in this arena and mechanisms to demonstrate action taken.
11.36 At the micro level, it was felt that training and education was needed for front line staff, employees, and practitioners including GPs, and mental health professionals. Several interviewees suggested that there was a need for training and education that went beyond making people aware of their statutory duties to also consider how their attitudes and behaviours have implications for the services that they provide. It was proposed that the input of people with lived experience of mental health as trainers would be a powerful mechanism in shifting attitudes.
Vehicles for effecting change
11.37 As mechanisms for implementing future actions, the view was that there continued to be a need for a central driver, a 'see me' , to give leadership and a high profile to action to address the stigma and discrimination experienced by people with mental health problems, and to develop the knowledge base and act as a resource. It was suggested that, although having a specific focus on mental health and mental health problems, this central body should work alongside, and in tandem with, other equalities bodies. In addition to this national 'figurehead', there was also reinforcement for a strengthened bottom up "community development approach" to support action at local level.
11.38 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. To support employability, for example, it was suggested that there was a need both for mental health professionals to recognise the importance of employment, as well as an understanding among employers of the capacities and abilities of people with mental health problems. For one professional working in the field of employability the message that needed to be put across was "see me….I can get a job". Integration also implies embedding action through existing systems. One respondent described the use of the Condition Management System 10 as a way of supporting people and enabling them to return to work quickly, or the inclusion of issues of stigma in a NHS Board's staff governance plan.
11.39 For those interviewed, integration also implied partnership working, including with people with lived experience and with a range of different stakeholders. This includes ensuring different agencies/organisations recognise that they do have a stake in this agenda. One respondent felt that there is scope for cross agency learning through shared diversity training.
Embedding campaigns and approaches aimed at tackling the stigma and discrimination experienced by people with mental health problems within wider equalities and diversity agenda
11.40 Consistently the view was expressed that while it was important to embed activities to address the stigma and discrimination experienced by people with mental health problems within broader human rights, equalities and diversity initiatives, there was a continued need for a central body to give leadership, direction and impetus. In other words, there needed to be both more integrated activity, particularly across the different 'equalities' strands, but also a continued need for a separate mental health specific 'strand'.
11.41 Greater integration was felt to be important, both as an opportunity for learning from other approaches to addressing stigma and discrimination and as an important route for embedding consideration of mental health related stigma and discrimination as experienced by people with mental health problems across the equalities and diversity and social inclusion agendas.
11.42 On the other hand, the need to maintain a separate mental health profile was based on a concern that although much had been achieved (See Chapter 10 above), the dynamics of stigma and discrimination as they related to mental health problems were still, comparatively, less well understood. There was a risk that, by putting stigma and discrimination activity into one larger 'pot', it would get 'lost' and the 'messages' diluted, at a time when, it was felt, there was still "a long way to go".
11.43 Several respondents suggested that what was required was a "mainstreaming phase" before stigma and discrimination activity in relation to mental health problems could be integrated without a diminution of momentum.
11.44 The evaluation interviews took place before the Equalities and Human Rights Commission became operational in October 2007, replacing the Disability Rights Commission, Commission for Racial Equality and Equal Opportunities Commission. Insofar as reference was made to the potential impact of the new Commission it tended to reflect this tension between the value of integration versus loss of focus.
11.45 Although it is outwith the scope of the evaluation to consider different models in practice, it is interesting to note that different agencies were themselves taking different approaches. In two public sector organisations and one voluntary sector organisation, for example, consideration of stigma and discrimination as experienced by people with mental health problems was embedded within 'generic' equalities and diversity strategies. The respondent in one organisation felt this approach more closely reflected individual experience: people did not fit easily into one 'strand' but could have a range of different needs to which the service had to be responsive. A further public sector organisation specifically chose not to 'add' mental health on to an existing equalities strategy, but instead developed a separate Mental Health and Well-being strategy, to give a specific profile and focus to mental health, including challenging discrimination within the organisation and with those with whom it interacted. As the respondent commented "I want to see [organisation] as being hot on mental health and well-being issues".
Sustainability
11.46 Across the interviews a key theme was the importance of continuing the work that 'see me' had started. Although much had already been achieved it was felt that this was just the start and not the end of a process. Discussions of sustainability therefore had two dimensions: sustaining and building on gains made to date; and 'see me''s role into the future.
Sustaining and building on gains made
11.47 It was suggested by participants that evidence from other campaigns indicated that stopping a campaign too soon would put achievements to date in jeopardy. The 'see me' management group, for example argued that although they felt much progress had been made, the impact of 'see me' would be under threat if the campaign was to cease at this point. It was felt by the then Campaign Director that although the aim of getting the issue of stigma on to the public "radar" had been achieved it would require further action to maintain this public recognition through ongoing media work and general public campaigns.
11.48 In order to build on impacts achieved to date, the 'see me' management group felt that a degree of consistency was required. Bringing in alternative messages or an alternative brand at this stage of development may be counterproductive.
11.49 One question, however, to arise in analysing the legacy of a social marketing campaign such as 'see me', is how long a campaign should run for to achieve the outcomes it desires. It was consistently suggested by those interviewed in the course of the evaluation that "it takes a generation to change". It was the subject of discussion within the 'see me' management group as to whether this change would be the result of a slow constant chipping away of attitudes, or a build up to a tipping point after which rapid change would be achieved.
11.50 It was also acknowledged that 'see me' was not acting alone in changing attitudes towards people with mental health problems and mental health awareness. Other actions to improve knowledge and understanding of mental health issues in Scotland would contribute to the ongoing anti-stigma message. Examples of other activities with the potential to promote anti-stigma messages included the Scottish Centre for Healthy Working Lives' Commendation Award schemes, and the Scottish Health Promoting Schools Unit's emotional literacy work.
11.51 The work on recovery by the Scottish Recovery Network, and reflected also in the rights and recovery approach proposed in the national review of mental health nursing (Scottish Executive, 2006a), may also work to give a different and more positive understanding of the lived experience of mental health problems. In addition, as noted above, Commitment 1 of Delivering for Mental Health (Scottish Executive, 2006b) seeks to effect changes in the culture and behaviours within the mental health system.
11.52 The development of local level activity to address stigma and discrimination was also felt to be important to ensure the sustainability of gains to date. However, as indicated in Chapters 7 and 10, lack of local capacity whether in terms of staff and/or funding could undermine or stall any gains made or future progress. In this context, continued funding for a national level campaign and resources to support local activity was viewed as an important component of achieving the goal of addressing the stigma and discrimination experienced by people with mental health problems. The Scottish Government was therefore seen as continuing to be an important force for ensuring the anti-stigma message was taken up by the general public.
'see me''s role into the future
11.53 'see me''s role and the avenues for sustaining and developing on the gains made overlapped in the responses of those interviewed in the course of the evaluation.
11.54 As noted above, participants saw a clear need for a central driver, to give leadership to actions to address the stigma and discrimination experienced by people with mental health problems. In terms of activities, several individuals from within and outwith 'see me' suggested that the campaign had a national level role in helping to embed anti-stigma messages within other policy agendas. Action was also thought to be needed within large-scale organisations, such as the Royal Colleges, not just to raise but also to keep anti-stigma work and discrimination on their agendas. At a local level, further support from 'see me' was deemed necessary, to enable local areas to build on and bolster existing developments, and encourage new activity in areas where anti-stigma action has been slow to get off the ground thus far.
11.55 While across the different groups of participants it was felt important for 'see me' to achieve a balance between local and national action, the views of those interviewed, within and outwith 'see me' placed more emphasis on local activity, as an avenue where greater sustainability could be achieved. One representative from a National Programme delivery agency suggested that 'see me''s role should be as facilitator of local action, rather than as an implementer: 'see me' was in a position to use their experience, systems and support for others to use in their own anti-stigma activities.
11.56 From the point of view of several national level respondents, the campaign's internal structure: specifically the management group and the clear decision making process which had been developed would help to support the sustainability of the campaign.
11.57 Conversely, for other interviewees the fact that the campaign management group had stayed limited to five mental health specific organisations was perceived as limiting the potential scope for integrating activities relating to the stigma and discrimination associated with mental health problems with other equalities and social justice agenda. Further, it was considered important that perpetuating the 'see me' 'brand' did not come to act as an unintentional barrier to other agencies and initiatives taking responsibility for tackling stigma and discrimination.
Key Points
- In terms of the focus for future action, across those interviewed there was a recognition of the different social processes underlying stigma and discrimination, but less clarity around the implications of these different processes for future action.
- In developing its population wide 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.
- A number of target 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.
- Potential future target settings included workplaces and NHS services.
- 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.
- To sustain and also to mainstream activities to address the stigma and discrimination experienced by people with mental health problems was suggested that there was a continued need for a mental health specific champion or figurehead.
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