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Chapter 1
FROM POWERLESSNESS TO POWER
Introduction
The importance of advocacy has long been recognised by service user movements as a mechanism to achieve social justice and equality and promote rights. Being able to speak for ourselves and to assert our own views, needs and wishes, in other words self-advocacy, is āthe gold standard in being a citizenā (Beresford 2014). This is not always possible, however, and the barriers to self-advocacy include lacking knowledge about rights, lacking confidence or being fearful of the consequences of expressing views. In a mental health context, this is compounded by distress and the difficult and disempowering circumstances of compulsion under the Mental Health Act (MH Act). The power of psychiatry and associated psy-professions, underpinned by a reductive biomedical model, has had a pervasive impact on peopleās lives and futures, and consequently is a focus for activism in many countries (Russo 2014). This is grounded in social understandings of mental health and recognition that barriers to inclusion and empowerment are social and structural in form, with well-documented associations between socio-economic inequalities and poor mental health evidencing the need for progressive social policies to promote equal citizenship. Collective social action and advocacy, both individual and collective, is also required not only to promote the claims of people experiencing mental health problems but to open up a space for different forms of knowledge, practice and relationships to emerge. In this book, we take a critical look at the value and practice of statutory mental health advocacy, i.e. independent mental health advocate (IMHA) services, its evolution, and its contribution to promoting rights and social justice.
Defining advocacy
Advocacy can be described as the process of identifying with and representing a personās views and concerns, in order to secure enhanced rights and entitlements, undertaken by someone who has little or no conflict of interest. Put more positively, advocacy is rooted in a special, and perhaps unique, relationship between the advocate and the person they support and uses the tools of representation, negotiation and persuasion in order to bring about a beneficial change in the partnerās life. Advocacy requires commitment to the āpartnerā (person supported by an advocate) but also a determination to see the process through ā to aim for something better at the end of the process, either a concrete āvictoryā or a greater sense of involvement and empowerment. (Henderson and Pochin 2001, pp.1ā2)
Defining advocacy is a complex undertaking. However, the matter of definition is important to consider for a number of reasons, not least because of potential for confusion in light of debates about the role of independent advocacy as opposed to contributions claimed by health and social work professionals (Dalrymple and Boylan 2013; Jugessur and Iles 2009). Furthermore, it is helpful to understand the landscape of advocacy in order to locate the development and practice of IMHA services. Definitions typically frame advocacy as the means for ensuring the voice of the service user is heard (Hugman 1991). Broadly speaking, the service user either speaks for themselves (self-advocacy), or their voice is heard through the intercession of another person. This could be someone who comes to the advocacy role with shared relevant experience (as in peer or collective advocacy), a volunteer who takes on an unpaid advocacy role (citizen advocacy) or is paid to perform the advocacy role (professional advocacy). This version of advocacy resonates with the Oxford English Dictionaryās (2nd edition) definition of advocacy as meaning āto plead or raise oneās voice in favour of; to defend or recommend publiclyā. Clearly, in a context of diverse advocacy services, neat distinctions are often blurred. Typically, independent advocacy involves a partnership between a concerned member of the community (citizen advocate) or paid professional advocate and a person who may be feeling vulnerable, isolated or disempowered. In these circumstances, the advocate provides support, information and representation to empower the individual (advocacy partner) to express their needs and wishes (Macadam, Watts and Greig 2013; Stewart and MacIntyre 2013).
Mental health advocacy can be a statutory entitlement, such as IMHA services, or provided as a generic service, not just to those detained in hospital or under Community Treatment Orders (CTOs). Those deemed to be lacking capacity who are in the mental health system may also have entitlement to an independent mental capacity advocate (IMCA) under the Mental Capacity Act (MC Act) 2005. Furthermore, some services which assume the title of advocacy are not, in part or wholly, providing advocacy. An example would be a service calling itself advocacy but which in reality provides information and advice or befriending. Simple information giving does not constitute advocacy, yet would be an important element of the process of advocacy if, for instance, there were concerns over a personās awareness of their individual rights. Although not always clear-cut in practice, independent advocacy in mental health takes various forms, and the main types identified from the literature are summarised in Table 1.1.
| TABLE 1.1 DIFFERENT FORMS OF ADVOCACY |
| Type of advocacy | Definition | Development |
| Self-advocacy | Self-advocacy is about people asserting their own rights, speaking for themselves, expressing their needs and learning to speak for themselves and other people (see Williams, Shoultz and Berglas 1984). This also encompasses concerns about peopleās rights as citizens, such as their right to meaningful employment (Ward 1998). | Developed in the UK since the 1970s with and by people with learning disabilities, its roots are firmly in the disability movement and related collective action to bring about social change. Now forms an important element of wellness recovery action planning (Jonikas et al. 2013). |
| Collective advocacy (also known as community advocacy) | Collective advocacy involves people speaking up individually or collectively about concerns that affect them. The term community advocacy is more commonly used for collective advocacy to represent the interests of a particular community, for example people from Black and Asian minority ethnic (BAME) communities (Rai-Atkins et al. 2002). | Examples include patient councils established within hospitals, active in the UK in the 1980s and 1990s, or alternatively various service user or survivor groupings, autonomously organised in community settings. More latterly, service user involvement forums have multiplied, with different formats reflecting local circumstances, some self-organised, often hosted in the voluntary sector, with others organised in alliance with mental health services and located within them. |
| Citizen advocacy (also known as lay advocacy or volunteer advocacy) | An advocacy partnership is set up when an (unpaid) volunteer or ordinary member of the community works with a vulnerable person to ensure their voice is heard in the system, and promotes their point of view in decision making. This partnership is long term. | This form of advocacy was developed in the 1970s in the UK primarily by supporters of normalisation and the principle of having someone involved in the personās life who is not paid to be with them. In this sense, advocacy was seen as part of the process of protecting vulnerable people, ensuring there are people in their lives who care about what happens to them outwith professional roles. |
| Peer advocacy | Peer advocacy involves people who have āinsiderā knowledge as advocates by virtue of sharing the same experience, e.g. age, ethnicity or disability (Harnett 2004). | Similar to the development of self-advocacy and citizen advocacy, and can also be thought of as a form of collective advocacy. Peers are an important strand of recovery-based approaches but may provide a range of support other than advocacy, for example mentoring. |
| Professional (or paid) advocacy including statutory advocacy | Advocacy is provided by trained and experienced independent advocates and responds to a range of issues. This includes statutory advocacy (IMHAs, IMCAs and Care Act advocates). Professional advocates can work as generic mental health advocates with people at any stage in the mental health service system on short- and long-term issues. | Both IMHAs and IMCAs in England and Wales were introduced under legislation, and it is therefore a right of any eligible person as defined by these Acts to access such statutory forms of advocacy. Care Act advocacy has been more recently introduced in England in relation to adult social care. |
| Legal advocacy | Based on the principle that lawyers have a responsibility and duty to act for the best interests of their client. It is described as the act of putting an individualās case in the most persuasive manner, establishing peopleās rights by defending their conduct (Jugessur and Iles 2009). | Under the Mental Health (MH) Act, people who are detained or placed under a CTO have the right to legal representation at Tribunals. |
| Non-instructed advocacy | Where, for reasons of capacity, individuals are unable to personally instruct their advocate but they may still need an advocate to ensure their rights are upheld. In order to act on the personās behalf, an advocate will spend time observing the advocacy partner, look for ways for the partner to communicate their wishes and, if relevant, gather information from significant others in the partnerās life. | Various forms of advocacy can be non-instructed, e.g. citizen advocacy. IMCA is the most widespread form of non-instructed advocacy, since its introduction in 2005. |
A further complication is the ābest interestsā advocacy role undertaken by health and social work professionals on behalf of their clients/service users/patients, including the conflicts evident for service professionals adopting an advocacy role. Legal advocacy is clearly important in mental health, particularly in respect of compulsion, and we briefly acknowledge this form of advocacy whilst our main focus is on independent (mental health) advocacy. Legal advocacy, however, can have a key role in promoting social change through litigation, law reform and policy development (Stylianos and Kehyayan 2012), and critiquing the basis of mental health law (Perlin and Douard 2008). Many progressive lawyers are also advocates in the campaigning sense, and struggles for civil or human rights in the mental health or disability context are often expressed primarily as appeals to law or legislative reform. Finally, we have not considered advocacy for carers and family members, as IMHA is aimed at people with mental health problems. Nonetheless, carer advocacy forms an important part of the landscape and recognises that carers also have needs and encounter challenges in getting their voice heard by services.
Mental health advocacy and power
Advocacy is grounded in recognition of the power disparities between services and the people using those services (Brandon et al. 1995; OāBrien 1987; Silvera and Kapasi 2002), having the intention of mitigating vulnerabilities engendered in such human service systems, promoting change and eliminating barriers to inclusion (Stylianos and Kehyayan 2012). Thus, advocacy has the potential to alter the dynamic within services so that there is greater equality and power sharing, such that the views of individual service users are central to decision making and support their wider citizenship. The impact of this will not only enable someone to reach their personal goals but broaden the range of options available, including alternatives beyond the sphere of professional jurisdiction.
The powerlessness experienced by people with extensive contact with mental health services, and particularly those subject to compulsion, is profound. In many countries the law accords the state powers to detain people with mental health problems in hospital and, in specific circumstances, to treat them, against their will, including in community settings. Legislative compulsion is increasing year on year in the UK and in 2013/14 was at its highest ever recorded annual figure of 53,176 uses of the Act to detain people in hospital for longer than 72 hours (CQC 2015a). Ca...
