Specialist care - Threats to dignity in mental health care
Research evidence broadly identifies three areas as threats to dignity in mental health care, although there is considerable overlap between them:
- stigma and discrimination
- acute inpatient care
- human rights violations
Stigma and discriminationOpen
Stigma and discrimination have the potential to violate dignity through their effects on individuals as well as on society as a whole. Both the UK Human Rights Act (1998) and the UN Convention on the Rights of Persons with Disabilities (2006) include the right to live free from discrimination.
According to the Social Exclusion Unit (2004), adults with mental health problems are one of the most socially excluded groups in society. For older people the stigma attached to mental health problems is combined with ageism. The Unit’s wide-ranging study looking at mental health and social exclusion found that fewer than a quarter of people with mental health problems were in employment – the lowest employment rate for any of the main groups of disabled people.
The Unit’s consultations revealed that stigma and a lack of understanding made it difficult for people to work, access health services, participate in their communities, and enjoy family life. As many as 83 per cent of those consulted identified stigma as a key issue affecting social exclusion; 55 per cent identified stigma as a barrier to employment; and 52 per cent mentioned negative attitudes towards mental illness in the community.
More recently, the Stigma Shout survey (Time to Change, 2008) confirmed that stigma and discrimination is pervasive – 87 per cent of people with mental health problems reported that stigma had a negative impact on their lives. Two-thirds had stopped doing things because of the fear of stigma and discrimination.
Stigma and discrimination take place on several different levels in society: social, political, economic and individual. In considering dignity, we are often concerned primarily with their effect at the individual level, but we should not forget the structural levels at which they operate. For example, people with a psychiatric history are barred from sitting on a jury, frequently encounter barriers to employment and differential treatment by the financial and insurance industry. All of these impact on dignity.
There is a distinction between the terms ‘stigma’ and ‘discrimination’. Sayce (2000) argues in favour of the term discrimination, because it ‘[shifts] the emphasis from the victims of unfair attitudes and treatment to the individual and collective perpetrators.’ However, it is the felt experience of stigma as well as the effects of actual unfair treatment that have the potential to violate dignity.
People who perceive themselves to be members of a stigmatised group, whether it is obvious to those around them or not, often experience psychological distress and may view themselves with contempt (Heatherton et al 2000). The concept of a mental illness diagnosis leading to a ‘spoiled identity’ was evoked by Erving Goffman (1963) who defined stigma as 'the process by which the reaction of others spoils normal identity'.
The concept of ‘internalised discrimination’ or ‘self-stigma’ is discussed by Warner (2011). He mentions a number of research studies which demonstrate that internalised stigma, characterised by low self-esteem, disempowerment and low levels of hope, undermines the possibility of recovery. He advocates the need to treat people with mental health problems:
with the respect that will allow them to retain a sense of dignity and to be provided with opportunities for advancement that will show them they are masters of their own destiny.
Mann (1998) (quoted in Horton, 2004) identified four categories where dignity is violated, several of which could result from the processes of stigma and discrimination:
- being ignored or insufficiently acknowledged
- being seen but only as a member of a group
- having one’s personal space transgressed involuntarily
There is also a cyclical process taking place: Both Mann (1998) and Jacobson (2009) claim that violation of human dignity can in turn have detrimental effects on mental health and wellbeing. Jacobson (2009) analysed 64 semi-structured interviews with people marginalised by their health or social status, providers of care and people working in the field of health and human rights. Jacobson distinguishes between two types of dignity: human and social. She defines human dignity as ‘the abstract, universal quality of value that belongs to every human being simply by virtue of being human’. Social dignity incorporates ‘dignity of self’ and ‘dignity in relation’, acknowledging the reciprocal nature of dignity and self-respect in our social world, which means that it can be violated, withdrawn, promoted, gained or lost. In the longer term, Jacobson proposes that the consequences of dignity violation are social isolation, passivity or ‘learned helplessness’ and poor physical and mental health.
In a longitudinal study measuring stigma and self-esteem in 70 members of a US mental health clubhouse, Link et al (2001) demonstrated a strong association between stigma and low self-esteem. They concluded that an important consequence of reducing stigma would be to improve the self-esteem of people with mental health problems.
Multiple discrimination occurs when an individual or a group of people is affected by discrimination for more than one reason. Stigma and discrimination particularly affect people who fall into other minority or seldom heard groups, such as women, people living with severe mental illness, people who are gay, lesbian or bi-sexual, people with additional disabilities and people from black and minority ethnic (BME) communities.
Warner (2009), in exploring issues of health promotion and human rights in relation to smoking, argues that shame is central to understanding the way in which stigma operates. Shame, she suggests, is both a profoundly social and an intensely private emotion. She contends that the additional stigma experienced by smokers who already disadvantaged as a result of their mental health status, has implications for their human right to dignity as well as for the effectiveness of health campaigns to stop smoking.
Multiple discrimination is complex. People from BME communities can be affected by both racism and stigma or discrimination as a result of a diagnosis of mental illness – within their own community, as well as by wider society.. This can prevent people from seeking help and delay treatment and recovery. People from some BME communities, particularly young men of African and African Caribbean origin, are over-represented within the mental health system, according to national statistics (for example, Care Quality Commission, 2011). They are also more often admitted to hospital in an emergency or via the criminal justice system (Care Quality Commission, 2011), which has potential implications for their personal dignity and human rights.
Acute inpatient careOpen
Acute inpatient care was singled out for examination by the Government when it extended the ‘Dignity in Care’ campaign to mental health care.
There have been many accounts of poor treatment and care experienced by people in mental health inpatient wards, both in the UK and elsewhere (Sainsbury Centre for Mental Health, 1998; Niveau 2004; Lilja and Hellzen, 2008; Mental Health Act Commission, 2008; Hopkins, 2009; Kogstad, 2009; Mayers et al, 2010). Accounts by mental health service users also bear witness to the difficulties of maintaining dignity in mental health acute wards (Faulkner 2005; Hardcastle et al, 2007; Campbell, 2010).
Lilja and Hellzen (2008), in a qualitative study of former patients’ experiences of hospitalisation, refer to the experience of inpatient care as ‘a struggle for dignity in the face of discrimination and rejection’.
The Mental Health Act Commission’s biennial report (2008) found conditions in acute psychiatric wards to be ‘tougher, scarier places’ than 10 years previously. Campbell (2010) writes about the need to recover from the experiences surrounding admission to hospital as well as from the original crisis that precipitated admission:
‘For whatever reasons, crises have been a regular feature of my adult life and I have seen the inside of a good many acute wards. By and large, they have succeeded in putting me back on the rails without satisfactorily meeting my real needs. In my opinion, this can be attributed to an approach that is essentially dehumanising.’ (Campbell, 2010, p.25)
The ‘Human Rights Insights’ study (Ministry of Justice, 2008) in which 4,000 adults were interviewed, found that people in mental health units are less likely to report that staff treat them with dignity and respect than those in primary and secondary care. User-led research carried out in Northern Ireland as part of the Mental Health Foundation’s ‘Strategies for Living’ programme (Walsh and Boyle, 2003, reported in Faulkner, 2005) found that staff and patients rarely engaged in a relationship based on therapeutic interactions. The main role staff adopted was ‘to prescribe medication and to ensure that rules were adhered to’ (p11). The patients interviewed said they were more likely to speak to each other about their difficulties, although they still wanted to be able to talk to staff about the personal causes for their mental distress. Hospital routines were seen as more important for staff than addressing patients’ needs. The few staff singled out for praise showed ‘human qualities… respect and dignity we expect from each other…’ (p11).
Kogstad (2009) analysed 335 patients’ narratives and identified three themes which represent various degrees of ‘encroachment on dignity’: miscommunication, rejection and humiliation/punishment. Curtice and Exworthy (2010) discuss the threats to dignity that may occur within clinical settings and distinguish between personal and environmental issues. For them, personal threats to dignity include referring to a person by their diagnosis, neglecting their appearance, and adopting an infantilising approach towards adults due to actual or assumed incapacity.
Bramesfield et al (2007) investigated the World Health Organization’s concept of ‘responsiveness’ in relation to service users’ expectations of mental health care in Germany. The concept of ‘responsiveness’ is a measure of a health care system’s ability to respond to service users’ legitimate expectations of non-medical aspects of mental health care. The concept consists of eight domains, including dignity, autonomy and communication. Dignity in this case was interpreted as ‘being treated with respect’. The study found that inpatient service users scored their care significantly lower on dignity than did outpatients.
[responsiveness] becomes even more important when considering mental illness and mental health care. The characteristics of mental illness and also of some treatments – such as coercive treatment – as well as the stigma still attached to mental health care, make patients even more vulnerable.Bramesfield et al, 2007
In hospital, people from different BME communities may not receive care appropriate to their needs because of a lack of cultural sensitivity (Royal College of Psychiatrists, 2009). The findings of the Healthcare Commission (2008) also suggest that there is scope for improvement in meeting the needs of people from BME groups. The Commission expressed concern that the views of people from BME groups were recorded less often on their care plans, and that a higher proportion did not have a one-to-one session with mental health nursing staff during their first week of admission. It concluded that services should do more to engage service users from BME groups.
The belief system of some communities may be different from the Western medical approach to mental illness, and for others, a religious or spiritual perspective may be of particular significance. Stereotypes of young black men as both mad and bad (or violent) may also influence the ways in which they are treated both within and outside the mental health services (see, for example, ‘Joe’ Chapter 9 in Hardcastle et al (eds), 2007).
Environmental issues which can threaten dignity in acute wards include overcrowding and poor staffing (both in number and quality). The use of mixed sex wards continues, despite Department of Health guidance (2000) that mental health trusts should maintain the ‘safety, privacy and dignity’ of mental health patients by providing single sex wards, recognising that male and female patients’ needs may be different.
Curtice and Exworthy (2010) identify environmental threats to dignity as including lack of privacy on mixed wards, and impoverished or unclean environments. The Mental Health Act Commission (2008) reported long-running concerns, such as over-reliance on agency nurses, over-crowded wards, continued use of mixed-sex wards, and young people being placed on adult wards.
In December 2006, the Mental Health Act Commission (MHAC, 2006) published ‘Who’s been sleeping in my bed’, a report of their findings on bed occupancy. The survey found that bed pressures and over-occupancy of acute services have a negative effect on the care of detained patients just when they are at their most vulnerable. The Commission stated: ‘The measures taken to manage such bed pressures contribute to and exacerbate wider problems experienced in acute services, including difficulties in maintaining the safety, dignity and privacy of patients’ (p.13)
The 2009 national census of inpatients and patients on supervised community treatment in mental health and learning disability services in England and Wales (CQC, 2010) collected information on whether inpatients were in single-sex accommodation as defined by the Department of Health. The census found that 77 per cent of women patients were not in single-sex accommodation. The data also showed significant numbers of patients from BME communities in mixed-sex accommodation. The authors pointed out that for some of these patients, requiring women to reside in mixed-sex accommodation may be culturally insensitive.
Human rights violationsOpen
Several authors discuss human rights in relation to mental health care, both in the UK and beyond (Kingdon 2004; Niveau 2004; Yamin and Rosental 2005; Burns 2009; Kogstad 2009; Warner 2009; Curtice and Exworthy 2010; Mayers et al 2010)). Much of the debate concerns the potential infringement of people’s human rights through the use of mental health legislation which permits their enforced detention and/or treatment.
Niveau (2004) believes that, as long as professionals have the power to detain and treat someone compulsorily, practices that devalue the client’s ‘self-insight’ and threaten their dignity will continue. Furthermore, there is a view that mental health legislation is in itself discriminatory because it singles out one group of people for particular scrutiny (DH 1999, reported in Pilgrim 2007).
The ‘Human Rights Insight Project’ (Ministry of Justice, 2008) showed that vulnerable groups saw being treated with dignity and respect as the single most relevant factor when dealing with workers in the NHS or social services, compared with other principles of human rights. The study investigated public understanding of human rights, after a number of independent reports concluded that the potential of the Human Rights Act (1998) to improve the lives of people in the UK was yet to be realised.
Curtice and Exworthy (2010) discuss threats to dignity in clinical settings and suggest that poor care could potentially violate Article 3 of the European Convention of Human Rights (which prohibits torture or inhuman or degrading treatment or punishment). These threats might include physical abuse, excessive restraint and neglect. However, the authors point out that the European Court of Human Rights has set a high threshold for breaching [Article 3].
Mayers et al (2010) investigated perceptions and experiences of sedation, seclusion and restraint through collaborative research involving mental health service users. They identified three main themes from the analysis: inadequate communication, a violation of rights (including a lack of respect for human dignity) and the experience of distress.
Niveau (2004) reviewed the work of the European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment (the CPT). He studied all visits made by the CPT from 1989 to the end of 2001, which covered 78 psychiatric establishments across 35 European countries. The CPT found numerous cases of what it refers to as ‘dysfunction’, including inadequate resources, insufficiency or inadequacy of regulations concerning the use of restraint and seclusion, as well as failure in the legal context of non-voluntary hospitalisation and its control. Niveau concludes that:
no country is free of dysfunction or erroneous practices in any closed psychiatric institutionNiveau, 2004, p.153
Laidlaw and Buckle (2006) explore the important issue of deprivation of liberty of informal (voluntary) patients who are placed on locked wards. They highlight the curious anomaly that a voluntary patient does not have the rights and protections afforded by the Mental Health Act (1983) and yet is technically free to leave. They conclude that all informal patients be regularly reminded of their right to leave whenever they wish.
Kuosmanen (2007) also looked at service users’ perceptions, focusing on their experiences of deprivations of liberty. They list the following types of deprivation: restrictions on leaving the ward, communication with people other than those on the ward, confiscation of property and various coercive measures. The majority reported negative feelings about these experiences, although a few people appreciated the rationale behind the interventions. Kuosmanen argued that people should be given the opportunity to discuss these traumatic experiences afterwards, as they can be detrimental to an individual’s recovery.