Editorial

Citation

Repper, R.P.a.J. (2014), "Editorial", Mental Health and Social Inclusion, Vol. 18 No. 1. https://doi.org/10.1108/MHSI-02-2014-0004

Editorial

Article Type: Editorial From: Mental Health and Social Inclusion, Volume 18, Issue 1.

Rachel and Julie in action!

We are delighted to be offered the opportunity to become the co-editors of MHSI, but we also know that we have a hard act to follow in Adam Pozner. I am sure that you will all wish to join with us in thanking him for all he has done to grow MHSI during his tenure as editor – I only hope that we continue to build on what he has achieved.

Who are we?

We have worked and developed ideas together for over 30 years and together we have over 60 years’ experience of working in mental health services and over 40 years of living and working with our own mental health challenges and using mental health services. Our careers have spanned clinical, management, academic and policy domains and together we have co-authored three books and many papers. The focus of our endeavours has always been recovery and social inclusion for people who face mental health challenges, especially those who have historically been the most marginalised and excluded from our communities. We have led the development of recovery-focused practice within mental health services and pioneered the development of recovery colleges and peer support workers. Julie also has a particular interest in the challenges faced by relatives and friends of people who face mental health challenges and Rachel has a particular interest in the development of services to enable people who face such challenges to gain and prosper in employment.

Currently, we both work as senior consultants with the national “Implementing Recovery through Organisational Change” initiative (a programme, delivered by a partnership between the NHS Confederation and Centre for Mental Health, that is designed to help organisations to better support people who experience mental health challenges to recover satisfying, valued and contributing lives) and provide consultancy and training on issues relating to recovery and social inclusion both nationally and internationally. Julie is the Recovery Lead at Nottinghamshire Healthcare NHS Trust and Rachel is Chair of the English Department of Health Working Group on Equalities in Mental Health and a member of the English Mental Health Strategy Ministerial Advisory Group.

Over the years we have worked alongside many wonderful mental health practitioners who have fuelled our thinking and practice, but we have also had the privilege of knowing many thousands of amazing people with lived experience of mental health challenges. It it is the narratives of their lives, and the wisdom and insights they have shared, which have probably been most influential in shaping our work and our thoughts.

Where are we coming from?

Throughout our work in the mental health arena and beyond, we have always been committed to improving the life chances of people who face mental health challenges: ensuring that those who have been marginalised and excluded are able to participate as equal citizens in all facets of the life of our communities.

Recovering a life can be very hard. To be diagnosed with mental health problems is a devastating and life-changing event. Not only do you have to cope with strange, and sometimes frightening, experiences but all that these mean in our society. People start treating you differently. It is easy to lose confidence in yourself. Many feel alone and very frightened. Frightened about what is happening and the prospect of using mental health services. Frightened you will lose everything you value in life – like your friends, your work, your home, your college place, your position in the community – and that you will never be able to do the things you had planned to do in life, like have a good career, travel, raise a family. These fears are well founded: the continuing exclusion of people with a diagnosis of mental illness from all facets of economic, social and civic life is well documented (Sayce, 2000; Repper and Perkins, 2003, 2012, 2013; Social Exclusion Unit, 2004; Thornicroft, 2006).

Between 1999 and 2009, the National Service Framework for Mental Health (Department of Health, 1999) saw increased availability of therapy, treatment and support services in the form of Assertive Outreach Teams, Early Intervention Services and Psychology Services in Primary Care but the exclusion of people with mental health challenges continued unabated. The recently published Mental Health Dashboard (Department of Health, 2013) shows that, despite an increase in access to psychological therapy, unemployment rates for people with mental health conditions have risen and now stand at an appalling 72.3 per cent for all people with a mental health condition and 92.1 per cent for those who face more serious mental health challenges. At the same time the proportion in stable and appropriate accommodation has fallen to 61.7 per cent and data produced by the Office for Disability Issues (2013) shows that, in comparison with other disabled people, those facing mental health challenges are more socially isolated and face greater barriers in education. Data from the “Time to Change” campaign shows that 88 per cent report experiencing negative discrimination in at least one area of their lives, most commonly being shunned or feeling avoided by other people, and 72 per cent feel they had to conceal their mental health problems for fear of the prejudice and discrimination that they would experience if they were open about them (Corker et al., 2013).

Clearly there is much to be done and the need for MHSI has never been greater!

We feel that the way in which issues of inclusion and participation are approached is critical and there are a number of issues that need to be considered.

A clinical or a social model of exclusion?

The clinical framework underpinning most mental health services locates problems of exclusion largely within the individual and endeavours to change people (via treatment, therapy, skills training, etc.) so that they “fit in”: become “normal” and “independent” of support and services. Indeed, largely as a consequence of the poverty and social isolation that so often accompany mental health challenges, a much higher degree of “independence” is often required of people facing such challenges than of other citizens. Most of us are, in many ways, “dependent” (both practically and emotionally) on partners, friends and colleagues, and how many of us who have the financial resources to do so, make up for “lack of motivation” or “skill deficits” in “activities of daily living” (like cooking and cleaning) by purchasing “ready meals”, ordering “take-aways” and employing a cleaners?

We would argue strongly that inclusion and citizenship are not about “becoming normal” or “changing people so they fit in”, but creating inclusive communities that can accommodate all of us and enable us to use and contribute our talents. Not about “becoming independent” but having the right to support and adjustments (in line with our choices and aspirations) to ensure full and equal participation and citizenship. This means that, like the broader disability movement, we need to think about replacing a clinical framework for understanding and addressing exclusion with one predicated on a human rights and a social model of exclusion:

It is society that disables people. It is attitudes, actions, assumptions – social, cultural and physical structures which disable by erecting barriers and imposing restrictions and options (Oliver, 2004).

The human rights of “persons with disabilities” – including those with mental health conditions – are outlined in the “United Nations Convention on the Rights of Persons with Disabilities” (United Nations, 2006a). These include the “right to live independently and to be included in the community” (Article 19). This right is not contingent on “getting better” or living without support. Article 19 explicitly includes the right to access the “[…] assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community” (United Nations, 2006b).

Participation and inclusion do not involve changing people to fit in, but changing the world. As Patricia Deegan argued back in 1992:

[…] having a psychiatric disability is, for many of us, simply a given. The real problems exist in the form of barriers in the environment that prevent us from living, working and learning in environments of our choice […] [the task is] to confront, challenge and change those barriers […] that impede and thwart our efforts to live independently and gain control over our lives and the resources that affect our lives (Deegan, 1992).

Relationships with peers

Historically, the exclusion of people with mental health conditions was ensured by segregation in remote asylums. While community care initiatives have ensured that people are physically located within communities, for many, this has not resulted in their being a part of those communities. In an effort to move away from the segregated living, working and social environments (like “hostels”, “day centres” and “sheltered workshops”) that replaced the old institutions, efforts to promote inclusion and citizenship have sometimes valued relationships with “normal” people outside the mental health arena over relationships with peers who have also faced mental health challenges.

We believe this to be a grave mistake.

Most citizens inhabit a number of different social networks among friends, family, colleagues, fellow football players, stamp collectors, dog owners, horse riders, etc., and some of these networks are likely to be among people who have shared experiences with us (like old school or college friends, people in our ante-natal class, etc.). Too many people who use mental health services have been denied access to the usual range of networks that most people enjoy. Just as the identity of mental patient too often replaces all other identities, so the social network within mental health services replaces all other social networks. We would argue that the challenge is not replacing one social network (with others who have experienced mental health challenges) with another (outside the mental health diaspora) but of expanding networks and horizons so, like all other citizens, we have networks among those who have shared the significant experience of mental health challenges and using mental health services, as well as networks among friends and associates outside the mental health arena.

There is a wealth of evidence of the value of peer support (Repper and Carter, 2011) in the journey of recovering a life with mental health challenges, especially in relation to enabling people to develop social networks and explore opportunities and possibilities outside mental health the mental health system. There is a world of difference between the support of a peer as a traveling companion and being corralled into segregated, professionally run, services. We feel that there is enormous scope for fostering peer support networks and peer leadership in enabling people to participate in all facets of community life.

The role of mental health services

In the hard economic times that we are facing, it is tempting to argue “no cuts”: to attempt to defend existing services against the onslaught of recession on the assumption that everything would be all right if we only had more mental health professionals and more mental health services. This may be a mistake. In the times of relative plenty, we saw the development of mental health services, but no decrease in the marginalisation and exclusion of those who use them and international data indicate that social recovery is better in the developing world where services are less extensive (Warner, 2009). Mary O’Hagan (2007) has argued that mental health services – statutory or voluntary – and the expert professionals who inhabit them can (albeit unwittingly) perpetuate exclusion in a kind of vicious cycle. People with mental health problems believe that experts hold the key to our difficulties, our nearest and dearest believe we are unsafe in their untrained hands – they should leave it to the experts, and we all become less and less used to finding our own solutions and embracing distress as a part of ordinary life.

Mental health services cannot “do” social inclusion, the challenge is what part we can play in creating communities that can accommodate all of us: in helping those living with mental health challenges and those without to live, work, learn and play together and on equal terms. This involves supporting a relationship – and both parties may need support: the individual and their family, the employee and their employer, the student and their tutors, the person and their friends, etc.

It is too easy to regard “the community” as “the problem” because of the negative stereotypes and prejudice that prevail and to seek either to protect people from “the community” or act as the person's advocate within it. This blinds us to the resources and possibilities that exist within communities, including communities of people with lived experience of mental distress. Perhaps the real challenge is to help people with mental health challenges and communities to recognise that they hold most of the solutions to human problems. To move mental health services from centre stage to the margins: catalysts and facilitators rather than solely providers of services (New Economics Foundation, 2011).

Not just “them out there”

In promoting social inclusion and participation, we cannot simply think about the community outside mental health services – we need to look to “our own back yard”. “Them” and “us” barriers continue pervade mental health services. Sometimes this is manifested in small, everyday instances of infantilisation, disbelieving what you say and the assumption that professionals know best. Sometimes the manifestations are more extreme in nature – like separate staff and patient toilets, cups, plates and cutlery. The evaluation of the “Time to Change” campaign (Corker et al., 2013) shows that around one third of people using services report experiencing negative discrimination in the mental health services they use – more than reported such discrimination from physical health services, finding a job, education, police or benefits.

It is important to think about how we can ’put our own house in order’. This should involve not only thinking about attitudes, values and practices in relation to the support provided for individuals, but also considering:

* mental health services (both statutory and voluntary) as employers: ensure access to employment (and career progression) and actively valuing, and making use of, the expertise of lived experience within our staff teams; and

* moving from traditional “user involvement” (involving “them” in “our” services) to genuine co-production that:

[…] promotes equal partnership between service workers and those intended to benefit from their services – pooling different kinds of knowledge and skill, and working together […] designing and delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours (New Economics Foundation, 2011).

Our vision for MHSI

Our aim is not to create another academic research journal. We are committed to MHSI being a journal for practitioners by practitioners and those whom they serve.

We want to draw together wisdom and expertise about enabling those of us living with mental health challenges to participate as equal citizens in all facets of the life of our communities (including the communities that exist within the mental health arena). We will welcome input from everyone who has something interesting to communicate around mental health and social inclusion: people working in the mental health arena, people living with mental health challenges and their relatives and friends, individuals and organisations outside mental health services, etc., and if writing isn’t your strong suit then we are happy to help you think about how to put across your ideas and experience!

We hope to include intelligence gained from the narratives of lived experience (of both people living with mental health challenges and practitioners within and outside the mental health arena); innovations, practice-based evidence and examples of good practice; as well as innovative ideas, approaches and theories and the implications of these for thinking differently about practice.

We are looking to introduce two new regular features in the next issue:

* “The Journey to Work”: a narrative account from someone with mental health challenges who has returned to work: including what helped you in your journey, what you have learned from the experience and any hints and tips that you would like to pass on to mental health practitioners and others facing similar challenges. We know that many vocational services collect “return to work” stories, so please let us know if someone would like to turn their story into a short article for MHSI.

* “A Day in the Life of a Peer Support Worker”: a narrative from someone with lived experience who is working as a peer support worker within mental health services – either statutory or voluntary, with a focus on insights they have learned from the dual perspective of provider and recipient of support.

We would also value ideas from you about what you would like to see included in MHSI. Do you have particular ideas for special issues? Are there areas of inclusion or barriers to inclusion that have not received the attention they deserve (e.g. access to elected office or public appointments or ways of decreasing mental health hate crime)?

If you have any ideas, please get in touch!

Rachel Perkins and Julie Repper

References

Corker, E., Hamilton, S., Henderson, C., Weeks, C., Pinfold, V., Rose, D., Williams, P., Flach, C., Gill, V., Lewis-Holmes, E. and Thornicroft, G. (2013), “Experiences of discrimination among people using mental health services in England 2008-2011”, British Journal of Psychiatry, Vol. 202 No. S55, pp. 58-63
Deegan, P. (1992), “The independent living movement and people with psychiatric disabilities: taking back control over our lives”, Psychosocial Rehabilitation Journal, Vol. 15 No. 3, pp. 3-10
Department of Health (1999), National Service Framework for Mental Health, Department of Health, London
Department of Health (2013), No Health Without Mental Health: Mental Health Dashboard, Department of Health, London
New Economics Foundation (2011), In This Together. Building Knowledge About Co-Production, NEF, London
Office for Disability Issues (2013), Fulfilling Potential Building a Deeper Understanding of Disability in the UK Today, Department for Work and Pensions, London
O'Hagan, M. (2007), Parting Thoughts. Mental Notes (Vol. 18), Mental Health Commission, Wellington, pp. 4-5
Oliver, M. (2004), “If I had a hammer: the social model in action”, in Swain, J., French, S., Barnes, C. and Thomas, C. (Eds), Disabling Barriers – Enabling Environments, Sage, London, pp. 7-12
Perkins, R. and Repper, J. (2013), “Prejudice, discrimination and social exclusion: reducing the barriers to recovery for people diagnosed with mental health problems in the UK”, Neuropsychiatry, Vol. 3 No. 4, pp. 377-84
Repper, J. and Carter, T. (2011), “A review of the literature on peer support in mental health services”, Journal of Mental Health, Vol. 20 No. 4, pp. 392-411
Repper, J. and Perkins, R. (2003), Social Inclusion and Recovery. A Model for Mental Health Practice, Balliere Tindall, London
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Sayce, L. (2000), From Psychiatric Patient to Citizen. Overcoming Discrimination and Social Exclusion, MacMillan, Basingstoke
Social Exclusion Unit (2004), Mental Health and Social Exclusion, Office of the Deputy Prime Minister, London
Thornicroft, G. (2006), Shunned. Discrimination Against People with Mental Illness, Oxford University Press, Oxford
United Nations (2006a), “Convention on the rights of persons with disabilities”, available at: www.un.org/disabilities/default.asp?id=150 (accessed 12 January 2013)
United Nations (2006b), “Convention on the rights of persons with disabilities – Article 19”, available at: www.un.org/disabilities/default.asp?id=279 (accessed 12 January 2013)
Warner, R. (2009), “Recovery from schizophrenia and the recovery model”, Current Opinion in Psychiatry, Vol. 22 No. 4, pp. 374-80