Repper, R. (2014), "Challenging discrimination within mental health services: the importance of using lived experience in the work place", Mental Health and Social Inclusion, Vol. 18 No. 3. https://doi.org/10.1108/MHSI-07-2014-0023Download as .RIS
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Challenging discrimination within mental health services: the importance of using lived experience in the work place
Article Type: Editorial From: Mental Health and Social Inclusion, Volume 18, Issue 3
Traditional wisdom asserts that mental health services provide an accepting environment for people who experience mental health challenges – a place of respite free from the prejudice and discrimination that they face in the big wide world outside. While it is undoubtedly true that negative stereotypes and discrimination are encountered in most areas of life (see, e.g. Thornicroft, 2006; Corker et al., 2013; Office for Disability Issues, 2013; Perkins and Repper, 2013), it is not true to say that within mental health services people experience a world free from such prejudice and negative images.
Corker et al. (2013) show that around one third of people report experiencing negative discrimination within mental health services. Often it is the little indignities that erode the soul. All the manifestations of the barriers that divide “them” from “us”, “staff” from “patients”, the “mad” from the “sane”. Like people disbelieving what you say – checking out that it is correct with other more reliable sources. Like being treated like a child who does not know what is good for them and needs others to make decisions for you. Like the continuing existence of separate “staff” and “patient” plates, cups, toilets (Perkins, 2007) […] can there be any more degrading message than being unfit to use the same toilets as staff?
Over the three years of the “Time to Change” anti-stigma campaign there have been significant decreases in the negative discrimination reported from family, friends and neighbours; in social life and religious activities. However, the experience of negative discrimination from mental health staff has not decreased significantly. More people report negative discrimination within mental health services than in physical health services, dating, finding a job, housing or benefits.
Perhaps the persistence of negative stereotypes among mental health professionals is not surprising. Mental health workers typically see people when they are at their most distressed and disturbed. Rarely do we see people when they are out there, living their lives as friends, parents, workers, employers, football players, artists, etc.
The research and professional literature on which our professions are founded invariably focuses on deficits, dysfunctions, risk and the burden we impose on our nearest and dearest in particular and on our communities in general:
[…] even the briefest perusal of the current literature […] will immediately reveal to the uninitiated that this collection of problems is viewed by practitioners almost exclusively in terms of dysfunction and disorder. A positive or charitable phrase or sentence rarely meets the eye […] Deficit-obsessed research can only produce theories and attitudes which are disrespectful of clients and are also likely to induce behaviour in clinicians such that service users are not properly listened to, not believed, not fairly assessed, are likely treated as inadequate and are also not expected to be able to become independent and competent individuals in managing life's tasks (Chadwick, 1997, pp. xi-xii).
When people come to services, we typically focus on an exploration of their “presenting problems” in order to determine ways in which these might be reduced. Despite exhortations to adopt strengths based approaches’ (see, e.g. Rapp and Goscha, 2006) we wonder how many times the strengths and possibilities listed in the documentation we keep about people outweigh itemisation of their deficits and problems? How much of our review meetings, ward rounds, handovers between shifts is taken up challenges and dysfunctions rather than assets and achievements?
This focus on deficits, dysfunctions and problems matters because the way we talk about people determines how we think about them and how we treat them […] and indeed how people think of themselves. If all anyone talks about is your problems it is hard to see your own skills and opportunities. The foundations on which we build and rebuild our lives lie not in their problems but in our strengths and possibilities. If these are hidden then recovery is not possible.
It matters because people look to mental health professionals for expertise in mental health matters. If the messages we convey are ones of problems and needs, rather than strengths and possibilities, thus reinforcing the negative stereotypes that prevail within our communities – among, for example, employers, housing authorities, colleges, families – thus perpetuating exclusion.
It also matters because prejudice against the client group is one aspect of burnout, which is not uncommon among mental health professionals (Onyett, 2011).
So one of the biggest challenges we face is breaking down the negative stereotypes and prejudice that exist within mental health services. This must involve breaking down the destructive barriers that divide “them” from “us”, “staff” from “patients” and recognising our common humanity.
Eroding prejudice and discrimination: the importance of contact
We know that one of the most important factors in decreasing discrimination is contact. But to be effective this contact must be in “conditions of equal status, in situations where stereotypes are likely to be disconfirmed, where there is intergroup cooperation, where participants can get to know each other properly, and where wider social norms support equality”. (Hewstone, 2003, p. 352). Although mental health professionals have extensive contact with people who experience mental health challenges, this contact is not generally in conditions that erode prejudice. Major power differentials exist between “staff” and “patients” so contact is not on equal terms and social norms do not promote equality. Clinicians see people when they are at their most distressed, therefore it is not in a situation where stereotypes are likely to be confirmed. Prevailing practice means that there is a focus on problems and dysfunctions and clinicians are exhorted to preserve “professional boundaries” and reveal little of themselves, so participants do not get to know each other properly.
If negative discrimination and “them and us” barriers within mental health services are to be eroded, then it is important that clinicians have contact with people who experience mental health challenges in conditions that erode prejudice. This might best be achieved by including people with lived experience in the workforce. Working alongside someone in the same team towards common ends the necessary conditions.
This may, to some extent, be achieved by the inclusion of Peer Support Workers in the workforce. Peer Support Workers certainly offer images of possibility to both staff and people using services and are hugely beneficial in supporting people in their journey of recovery. They create a recognition of the value of lived experience and may also change attitudes and practices within teams (Repper and Carter, 2011). While the employment of Peer Support Workers certainly creates a more equal contact between clinicians and people with lived experience and the possibilities of co-operative working towards common ends, “them” and “us” barriers can still be maintained because people are employed in “special”, different’ posts specifically designated for those with lived experience.
The conditions necessary to reduce prejudice are likely to better created by (in addition to the employment of Peer Support Workers) having within the workforce mental health professionals – doctors, nurses, psychologists, social workers, occupational therapists – with lived experience of both mental health challenges and using mental health services. If you are working alongside someone in the same profession, at the same grade, then conditions of equal status exist where stereotypes are likely to be confirmed, intergroup cooperation exists and social norms support equality. Some “user employment programmes” were designed to make this possible (see, e.g. Perkins et al., 2010), as is the recent guidance from NHS Employers (2014) on supporting staff who are experiencing mental health problems.
It is undoubtedly the case that a large proportion of the mental health service workforce have themselves experienced mental health challenges. For example, confidential equal opportunities monitoring in South West London (response rate 95 per cent) showed that 23 per cent of all recruits (and 31 per cent of those recruited to more senior positions – bands 8 and 9) had experienced mental health problems (Perkins et al., 2010). A survey within Dorset Healthcare Foundation NHS Trust (response rate 31 per cent) found that 37 per cent of respondents reported accessing a mental health service or treatment (Dorset Wellbeing and Recovery Partnership, 2013).
However, including staff with lived experience on mental health challenges in the workforce is only of value in reducing prejudice if those staff are able to be open about this experience and use it in the workplace. If people hide their experience then “contact” between “them and us” cannot really be said to have occurred. Sadly, another consequence of the prejudice that exists within mental health services is that many staff who do face mental health challenges keep very quiet about these for fear of the discrimination that might result if they were known:
My very first experience of disclosing to a colleague was not a positive one. After I told them that I had personal experience of mental health problems they said that they wished I hadn’t said anything as they felt uncomfortable knowing that about me, and wouldn’t know how to act when we were on shift at the same time (Dorset Wellbeing and Recovery Partnership, 2013, p. 22).
Using the expertise of lived experience that clinicians bring
All clinicians bring three types of expertise. In addition to their professional training and experience, they also bring their life experience – their culture, talents, skills, interests, networks and experience outside the mental health arena – and their lived experience of trauma, including mental health challenges. Too often, because of ideas about “professional boundaries” staff feel they can only take their professional expertise to work.
This is problematic.
In order to create the type of contact that can really break down prejudice and negative stereotypes within services, it is vital that staff feel able to use the expertise of their own lived experience. Without this the necessary “contact on equal terms” and “situation where people can get to know each other properly cannot be achieved and discrimination within services is not challenged” and “them and us” barriers cannot be eroded and replaced by relationships that recognise our common humanity.
Such relationships are important not only in breaking down the negative discrimination, but also in promoting the recovery of those whom we serve and improving their experience of using services”:
Communication was the theme most central to the perception of relationships and an essential ingredient of the patient experience. How a relationship was experienced related to the nature and quality of the communication. The largely positive relationships of service users in this study with other patients, and staff who had personal experience of mental illness may be indicative of the value of collaboration, self-disclosure by both parties in developing relationships (Gilburt et al., 2008, p. 9).
Many mental health professionals who have used their lived experience in their work have remarked on the positive impact that it had on their relationships with clients:
I’ve asked many of my patients what it has meant for them to know about my history, and there is one consistent and resounding refrain: HOPE! (A mental health professional cited in Hyman, 2008, p. 19).
However, as with any expertise, the expertise of lived experience must be used in ways determined by the needs of the client, not the needs of the worker:
Disclosure, when it is geared to the needs of the client rather than the provider, can nourish hope and add a valuable human dimension to the relationship (Fisher, MD cited in Hyman, 2008, p. 19).
Any mental health worker must have the right to decide what experience they share and with whom. But keeping a “big secret” from colleagues and clients can also have its down-side and there may be benefits to the professional who chooses to be open about their experience of mental health issues:
Self-disclosure had a most positive impact on my life. Through self-disclosure, I have accepted that something had changed and that I was different. It was too difficult and painful to deny what was happening to me (cited in Hyman, 2008, p. 22).
However, prejudice and discrimination exist and it is important also to acknowledge the difficulties and risks for the mental health worker in using their lived experience at work. As Kay Jamison PhD, who has published many books about her own mental health challenges, remarks:
There is no easy way to tell other people that you have manic-depressive illness; if there is, I haven’t found it. So despite the fact that most people that I have told have been very understanding – some remarkably so – I remain haunted by those occasions when the response was unkind, condescending, or lacking in even a semblance of empathy (cited in Hyman, 2008, p. 20).
Making it possible for clinicians to use their lived experience
Clinicians with lived experience of mental health challenges and using mental health services have a great deal to offer. The expertise of lived experience can be critical in breaking down the prejudice and negative stereotypes about life with mental health challenges, breaking down “them” and “us” barriers and promoting the recovery of those whom we serve:
We have certainly come a long way since the days of the Clothier Report (1994) which advised against employment within the NHS within two years of having received treatment for a mental health condition.
In recognition of the way in which the expertise of lived experience can enhance the work of mental health professionals, it is not uncommon for mental health organisations to explicitly state that personal experience of mental health challenges is “desirable” in “person specifications for posts (see e.g. Perkins et al., 2010). Some organisations have developed networks of staff with lived experience both to assist in doing this and support staff, and others have begun to develop guidelines and frameworks for the use of lived experience (see, e.g. Hyman, 2008; Dorset Wellbeing and Recovery Partnership, 2013).
However, prejudice and discrimination exist within services and this is likely to make many reluctant to use their lived experience at work:
I choose not to disclose but that is not because I’m not comfortable with my Lived Experience, because I am very comfortable with that, but because I don’t trust the environment not to be stigmatising. It's “catch 22” I know (Dorset Wellbeing and Recovery Partnership, 2013, p. 22).
It is critical that we create an organisational culture that explicitly values the expertise of lived experience, where it is safe to use this experience, and where people are supported to do so. There is still a long way to go and much to be done. We will not only have to change hearts and minds, and sanction any prejudice/discrimination that does occur, we will also have to work out ways of supporting staff when they do experience mental health challenges and examine any policies, procedures customs and practices – like occupational health issues and guidance on “professional boundaries” – that may directly or indirectly create an environment mitigate against the creation of an environment in which barriers are broken down and everyone feels free to use their lived experience to enhance their work.
Some of these issues have already been explored in the pages of Mental Health and Social Inclusion. We sincerely hope that we can explore them further in future issues. Unless we can address the negative discrimination that exists within our services we cannot effectively address that which limits possibilities in a wider society.
Rachel Perkins and Julie Repper
1. Leeds and York Partnership Foundation Trust have produced a short animated film in which mental health professionals talk about the benefits and challenges of working for a mental health organisation and having personal experience of mental health difficulties (see vimeo.com/80071626).
2. For example, the “Living in Both Worlds” network in Nottingham www.nottinghamshirehealthcare.nhs.uk/aboutus/equality-diversity-and-inclusion/?locale=en and the “Hidden Talents” network in Dorset www.dorsethealthcare.nhs.uk/services/recovery/recovery-and-wellbeing-partnership.htm.
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