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Literature Review into Service User Experiences of and Engagement with Advocacy

The First Phase of a Two-Stage Project commissioned by Advocacy Consortium U.K. and carried out by Linda Laurie Associates

The contents of this tender are copyright to Advocacy Consortium U.K. and

Linda Laurie Associates 2010All rights are reserved.

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CONTENTS

Title Section Page

Introduction 1 3

People with Learning Difficulties 2 6

Generic Advocacy 3 21

Older People 4 35

Mental Health System Users and Survivors 5 43

Children and Young People 6 50

Hospital-Based Advocacy 7 61

Drug Use 8 64

People with Specific Physical Impairment 9 66

Domestic Violence 10 67

Conclusion and Recommendations 11 68

Complete List of References Appendix A 72

Summary Table Appendix B 81


SECTION 1 – INTRODUCTION

This report summarises the findings from a literature search and review conducted by Linda Laurie Associates (LLA) on behalf of the Advocacy Consortium United Kingdom (ACUK). During this (first) phase of the research LLA was commissioned by ACUK to conduct, we investigated written accounts of engagement with advocacy by those eligible to use a range of public services. In drawing up this report concerning service user experiences, LLA considered 75 sources (see Appendix A). In the report however, we make only passing reference to those documents which, upon closer inspection, shed no particular light upon experiences of service user engagement.

In those areas of the literature review where information has been found to be duplicated (by different sources) only the most relevant source has been cited in detail. A complete list of references sampled for this literature review appear in Appendices A and B of this report. Appendix A contains a complete alphabetical list of references, identifying the sources from which they were obtained, using the ‘Harvard’ style of document referencing. Appendix B is a summary table, in allocated numerical document reference order, enabling cross-referencing with the main body of the report in terms of the ‘general topic’. Where a document falls into more than one topic category, a common sense approach has been adopted by LLA to determine the (primary) section of the report under which to consider each document. In practice, this has often meant that a document has been considered in the ‘generic advocacy’ [Section 3] of this report, but by no means always is this the case.

The material LLA has reviewed has been identified under one or more of seven possible broad sources (or publication types) in Appendix B.

The majority of the material considered in this literature review is from the first decade of the 21st century although, so as to avoid overlooking important material and in light of the (comparatively) recent advent of the advocacy movement in the UK, some material from the 1990’s has been included. When considering user experiences of and engagement with advocacy services, LLA included all recognised forms of advocacy; all main social and service areas in which advocacy may typically arise; and all of the identifiable sections of society or communities of interest which typically access advocacy services.

The duel purposes for conducting this literature review have been to draw together in one place, a synthesis of research concerning user engagement with advocacy and (thereby) to identify gaps in the evidence base of recorded and documented accounts in this area. Below, abstracted from the specification for this phase of the commission, are the aim and objectives for Phase One. A very broad interpretation of service user experiences of and engagement with advocacy is reflected in these aim and objectives. Given the substantial weight of literature identified which to varying degrees touches upon service user


experiences of and engagement with advocacy, in retrospect it may have been more helpful to narrow down precisely what is meant by service user experiences of and engagement with advocacy as (otherwise) the varying strands can become very hard to disentangle.

“Phase One Aim:

To provide ACUK with detailed information on current research into different service users experience with independent advocacy, including highlighting any gaps and providing recommendations for future work.

Objectives in Phase One:

1. To establish via a desktop literature review all current available research on all types of service users’ engagement with and experience of advocacy.

2. To Identify and synthesise the evidence on the advocacy service user experience.

3. To Identify as far as possible the potential costs and benefits of advocacy service user engagement.

4. To highlight any gaps in the evidence base and identify any steps that could be taken to address these.”

By its very nature, advocacy is likely to some degree to necessitate service user engagement: Issues worthy of (future) consideration might include the quality, extent and therefore meaning of such engagement.

This (review) has laid the basis for a small amount of limited and targeted research to be conducted by LLA during Phase Two of the project. This (second) phase, will seek to explore the experiences of those eligible to use a range of public services with regards to their engagement with advocacy. In the ‘Conclusions and Recommendations’ Section 11 of this report, we discuss in more detail those communities of interest identified as being amongst the most under-represented with regards to gaps thrown up during this review in the research evidence concerning their engagement with advocacy. In Section 11 we also discuss the reasons for selecting those groups identified for some initial primary research for Phase Two of this project.

The approach we have adopted to structure the content of this report (following this introduction) is to start with the communities of interest containing the largest number of documents considered by LLA during this review. Subsequent sections have been placed in order, according to the numbers of documents considered under each topic area. Within sections of this report which consider more than one document, these have been addressed in chronological order (of publication). The four sections of the report in which only one document has


been considered, have been inserted according to their chronology (i.e. when they were published.

LLA is conscious that this literature review reflects a structured but fairly substantial body of sampled material, some of which touches only tangentially or indirectly upon issues of service user engagement with advocacy. This is, however, we feel inevitable in light of the breadth of the definition of service user engagement and experience implicit in the objectives for this phase of the project. Despite detailed searching, LLA has been able to find only one document which directly explores issues of cost (with regards to engagement) and then, this is limited only to the defined priority areas for the research commissioning framework of the Office for Disability Issues (ODI) [36]. The relevant aspects of this technical specification (which does not directly consider the cost of service user engagement beyond the field of research) are considered in the ‘Generic Advocacy’ [Section 3] of this report. It is hoped that this broad literature review will help to lay the basis for subsequent more focussed developmental activity, including primary research, to be commissioned by ACUK.


SECTION 2 – PEOPLE WITH LEARNING DIFFICULTIES

The area in which there appears to be the most evidence concerning user engagement and user experience of advocacy, is that of advocacy for and by learning disabled people. From the documents we sampled, a total of 21 or almost 30 percent concerned advocacy by and with learning disabled people. Almost all such advocacy is either self or peer advocacy. Perhaps unsurprisingly therefore, this is also the area in which there is the greatest amount of evidence concerning user engagement with and user experience of advocacy.

Two of the 21 sample documents we identified and read in this area were comparative studies from outside the UK: these were from Japan and the USA. Given the volume of texts in this area, LLA has focused in the main for this section of the report, upon engagement issues which appear to have the most durability, resonance and/or transferability.

The academic journal Disability & Society has provided a rich vein of material in this area. Volume 12 of the journal, which was dominated by articles about people with learning difficulties, contained three particularly relevant perspectives. Simone Aspis [16] who is a leading UK learning disabled activist and commentator, wrote an important commentary on user engagement with advocacy and, in particular, the limitations and controls imposed upon such engagement. She writes eloquently about the frame within which many self-advocacy groups operate. The adoption of the language of self-advocacy by community care, health and related service providers in non-user-led statutory and voluntary sector organisations and the controls she alleges are placed upon how self-advocacy groups in these settings operate, are a timely reminder when thinking about how best to define user engagement and when considering the various implications for such engagement which may underlie the establishment of an NSF for advocacy.

Aspis argues that "self-advocacy has become a tool to find out what people with learning difficulties think of services rather than to challenge the philosophy of services and [the] system that creates them and their inherent limitations.” [p.652].

She goes on to conclude that “As a consequence, the service provider [is] limiting the scope of what self-advocates are able to speak up about." [p.652].

One such example of controls placed upon learning disabled self-advocates cited by Aspis are courses such as that which was then based at the City Lit College in London. The problem with such courses, she argues, is that they do not focus sufficiently upon the skills and knowledge needed to gain change. She believes that


"[Such] courses do not include teaching students how to gain effective change through challenging policies and the law." [p.648].

Overall, Aspis states that self-advocacy cannot be a liberating experience “if its process and contents are being managed and controlled by the same people who have the power to oppress those who have been labelled as having learning difficulties." [p.653].

This often-cited article provides an important backdrop to and context within which self-advocacy by people with learning difficulties over the subsequent 12 years can be understood.

In the same journal, Dan Goodley [15] outlines why and how self advocacy is most usefully placed and understood within the framework of a social approach to disability. He states, citing Mike Oliver, that "It is society that has to change not individuals and this change will come about as part of a process of political empowerment of disabled people as a group and not through social policies and programmes delivered by establishment politicians and policy makers nor through individualised treatments and interventions provided by the medical and paramedical professions." [p.373].

This again is an important context in which to appreciate peer and self-advocacy as the principles underpinning these overlapping approaches towards advocacy are (within the UK at least) firmly routed in the Social (Activist) Model of Disability widely adopted throughout the UK Disabled People’s Movement. Peer and self-advocacy, it is argued, are the most empowering forms of advocacy as they reflect directly and to the greatest possible extent user engagement with and experience of services.

Lastly in volume 12 of Disability & Society, Paula Mitchell [19] explores the limitations placed upon meaningful engagement with self-advocacy by the families of people with learning difficulties. Her article provides some useful insights into the spectrum of family responses to the involvement of family members with learning difficulties in self-advocacy groups. To a greater or lesser extent, families seem to see this involvement as separate from the family, but many people with learning difficulties involved in the research saw engagement with self-advocacy as being important to their decision making, equal treatment within / by and choices about continuing to live at home with their parents / families. Citing Kurowski, Mitchell points out that "People First Wales, for example, exists in part to `help us all gain confidence so we can express ourselves.’” [p.46].

The research underpinning Mitchell’s work, whilst coordinated by her, was an action research project working with co-researchers who were all people with learning difficulties. It provides a useful illustration of the impact of self-advocacy in the everyday lives of those concerned. Parents’ views of self-advocacy were


seen as vital in determining how much could be translated into the home, and even whether or not people could participate in self-advocacy groups. Mitchell explains that "The co-researchers came up with a list of factors which they thought should feature in a home life in which self-advocacy was recognised and encouraged: family talks, including general family discussions, knowing what’ s going on and taking part in decision-making, parents’ attitudes, including being treated the same as others in the family and as an adult; helping people; having control over what you do; taking part in the household on an equal basis; having a say in the house rules; being allowed to go out; not being reminded to do things; being listened to; and having achievements recognised. Their experiences did not always match up to these hopes." [p.51]. She goes on to illustrate (from her literature review) the range of consistent themes which emerge as key principles of self-advocacy for people with learning difficulties who engage with it. These include:

“influencing services; changing attitudes and labels; joining with other oppressed groups aiming for social change and being part of the real world." [p.46]

In 1998, Michael Finlay and Evanthia Lyons [18] conducted quantitative and qualitative studies amongst people with learning difficulties to determine the extent to which they chose to identify with the label of “learning difficulty” and how they understood that label. They found that, in the main, people with a label of learning difficulty generally did not identify themselves as having a learning difficulty and saw “learning difficulty” as a negative label. This is contrasted by the researchers with the proud use of the term by self-advocacy groups such as People First. Finlay and Lyons conclude that this reluctance to adopt a collective label of “learning difficulty” or to understand (and be conscious of) a collective identity amongst many people with learning difficulties (in day centres for example) is an obstacle to self-advocacy and collective action. They also interestingly produce statistics which show that the majority of so-called self-advocacy is based within statutory services and has its agendas determined by statutory service providers. This fact is reinforced by the more clearly expressed ideas of Aspis (see above) and reveals perhaps what is the key issue when it comes to genuine independent conscious collective action on the part of self-advocating individuals with a label of learning difficulty. Self-organisation may be a necessary prerequisite for genuine engagement with advocacy therefore. They point out that "[...] the People First organisation is based around the explicit acknowledgement of the identity, although the name of the organisation also appeals to a higher order of classification: ‘The name People First means that we are people first, learning difficulty second.’ (People First, 1994)" [p.48].

In 1998, Wendy and Tim Booth [24] conducted a landmark study into the impact and effect of a citizen advocacy scheme supporting parents with learning difficulties. The limitations and benefits of such advocacy are explored in this


article as, to some extent, is the degree to which the parents concerned engaged with their advocates. It is described by the Booths as an ‘action research’ project, meaning (presumably) that an integral part of the research was an attempt to achieve change on behalf of those for whom the citizen advocates and researchers were advocating. This Joseph Rowntree Foundation-funded project report contains useful summaries of the role of advocates in working closely with and involving service users. Ignoring (for the purposes of our research) the limitations of advocacy explored by the Booths, it is perhaps worthy of note here that the role of citizen advocates (in this context) clearly involved substantial engagement with advocacy partners: The Booths state "[...] advocates acted as:

a witness to parents’ dealings with officials and practitioners; a buffer by fielding or deflecting matters that might exacerbate stress; a voice making sure parents’ views were heard; a go-between improving links between families and services; an interpreter putting information into language that parents could

understand; a listener enabling parents to talk things over; a scribe helping with letters and forms; a fixer sorting out problems of service delivery; a conduit channelling the lessons learned in supporting one family for the

benefit of another; a sounding-board encouraging families to have confidence in their own

ability to cope by helping them to work things out for themselves; a confidante with whom confidential information could be safely shared; an ally unambiguously on the family’s side; a sleuth tracking down and searching out information; a mentor sharing general knowledge and experience; an observer looking out for early signs of stress; a mover and shaker making things happen." [p.2].

We considered four articles in a 1998 book edited by Linda Ward entitled ‘Innovations in advocacy and empowerment for people with intellectual disabilities’ [60]. ‘One Day at a Time: Changing a System to Realise a Dream’ tells the story of a man with learning difficulties who was empowered by a group of disabled activists and allies acting as his advocate supporting him to move out of a nursing home after being there for over 10 years.

Ray’s account tells of the importance of having people listen to him and what he wants and take him seriously, rather than dismiss him. He speaks of the importance of having a plan so that people can take responsibility for specific tasks and the importance of being part of a movement for change. In this chapter, Ray states that “it helps to keep telling people what has to change and why it’s important. It helps to know you’re part of a movement.” [p.34].


‘Self-Advocacy: Speaking Up for Ourselves and Each Other’ was a chapter written in co-operation with the members of a county-wide, self-advocacy forum based in Cardiff which conducted a questionnaire survey of self-advocacy groups in Wales. Those surveyed were asked what self-advocacy meant to them and why it was important. The respondents reported a strong sense of being part of a single, common group. People were proud of who they are, what they are doing and of belonging to a group with a strong identity. This chapter confirms the thesis of Aspis regarding self-advocacy groups based within a service setting: The authors (who include people with learning difficulties) observe that “those belonging to self advocacy groups based within service settings tended to express a view about self-advocacy that reflects an interest in local service issues and problems connected to where their groups were located.” [p.43].

Groups outside of service settings shared a sense and common understanding of self-advocacy that was much wider, extending beyond their rights as service uses to have their rights as citizens recognised. A clearly-expressed view amongst such groups was that self-advocacy groups must be controlled by members so that things aren’t done by workers/facilitators which do not represent the views of the group.

The chapter entitled ‘Woman to Woman: Setting up and running a health advocacy group for women’ is the only resource we located which describes advocacy for women with learning difficulties as a distinct, identified group. The opportunity for learning disabled women to meet separately was clearly valued by the members of this group. This requires further research to be conducted as we were unable to find other examples of studies into the extent to which learning disabled women engage with advocacy.

Finally from this book, ‘Self-advocacy by Black People with Learning Difficulties’ is written by a Black woman with learning difficulties and a Black trainer/consultant whose work is underpinned by the social model of disability. More work (some of which is reviewed later in this report) has been done to identify the ways in which learning Disabled People from Black and Minority Ethnic communities engage with advocacy. In this chapter, the ideas discussed come from self-advocacy groups of Black people with learning difficulties in which the authors have been involved. The authors comment that there is a lot of ‘tokenism’ or pretending to listen to disabled people, whether they are Black or White, but they found that “[…] racial prejudice can result in discrimination even within the self-advocacy movement itself.” [p.145]. The lack of Black workers in the advocacy movement and Black professionals in statutory services makes challenges to established hierarchies less effective since those in power are usually white, non-disabled people. The authors observe that Black people with learning difficulties involved in self-advocacy groups of Black and Minority Ethnic people “[…] feel more important and feel good about being Black, because they have stood up for themselves and made decisions for themselves, and because

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they have found out more about what other Black people are doing in this country.” [p.146].

A number of those items considered during this literature review could be described as ‘grey literature’: One such document is the ‘Researching Together’ pack [62] which was produced for a 1999 conference led by action researchers who were learning disabled people. This pack records an important account of various ways in which learning disabled people from self-advocacy groups have engaged with research. In the pack, the Bristol Self Advocacy Research Group comment that “research takes you outside yourself, and you think about other people more than you do about yourself. Everyone’s got power in their own right and research gives us more power. It means people will listen to us.” [p.1].

Once again, the Journal Disability & Society provides us in 2001 with an article exploring ‘Social Movement Theory’ [17] and investigates the extent to which this approach can be said to shed light upon the relative position of the self-advocacy movement (of people with learning difficulties) and the broader (predominantly physically impaired) movement of “Disabled People”. The article critiques the social construction of disability, arguing that divisions ‘created by such an approach’ undermine unity in the Disabled People’s Movement. This discourse is beyond the scope of this report, except where the commentary highlights the specific issues of concern for people with learning difficulties seeking to engage with the (broader) Disabled People’s Movement. The author writes "[...] the process of promoting a collective identity which includes people with learning difficulties requires a recognition that individuals will be at different levels of awareness of their rights and needs and involvement in social movement organisations and activities." [p.135]. In practical terms, she goes on to identify barriers which serve to restrict the ability of learning disabled people to engage on equal terms within the Disabled People’s Movement. She points out that "[...] an ongoing commitment of resources [is necessary] to ensure problems of access for people with learning difficulties are acknowledged and production of jargon free information and Plain English or audio formats is promoted and maintained." [p.135].

A 2001 research project ‘Self-advocacy, civil-rights and the social model of disability’ [28] for which the author of this report was one of the lead researchers, exposes the important distinctions between different forms of self-advocacy. The research compared the experiences of people with learning difficulties using different forms of self-advocacy in different settings and the varying impacts which using these contrasting approaches had upon the informants to the research. When supporters from the advocacy group based at a day centre talked about members of the group during our interviews they often alternated between talking about them as self-advocates they supported and ‘clients’ who were under their jurisdiction and care. We wrote: "[...] A crucial part of [self-advocacy] is public visibility, with self-advocacy groups being the antithesis of a history of incarceration and segregation."


The first comparative study selected for this literature review was an insightful academic essay exploring the nature, impact and problems faced by the advocacy movement in the United States at the turn of the (current) decade. ‘Some observations on the American advocacy scene’ [73] focuses primarily (but not exclusively) on advocacy services for those with “developmental disabilities” [sic]. The essay presupposes that advocacy is a process conducted primarily ‘for’ those with learning difficulties. Whilst this is restrictive and problematic, the conclusions drawn by the author based upon trends in advocacy funding and organisation in the United States at the turn of the decade, are useful insofar as they provide an illuminating backdrop to the patchwork of advocacy groups which (in comparison) have far less established structures and funding (even today) in the UK. It also perhaps provides a useful method for anticipating possible developments in the UK advocacy scene and enables us to consider how best to ensure that any such developments can serve to empower and embed service user engagement rather than (perhaps inadvertently) undermine it.

In terms of its relevance to the matters under discussion in this literature review, the essay touches upon the effect of “professionalisation” upon advocacy as an ‘industry’ in the US with respect to service user engagement and self-organisation (within and by communities). The essay promulgates the view that this “professionalisation” has served, to a significant extent, to impact negatively upon the creation, maintenance and growth of spontaneous forms of community, collective and / or peer and self-advocacy.

The US advocacy scene for ‘people with developmental disabilities’ covers a variety of advocacy “types” described by Kendrick as including citizen advocacy, legal advocacy, family advocacy, peer advocacy, individual and systems advocacy, advocacy coalitions, self-advocacy, voluntary advocacy membership associations, mandated state protection and advocacy programs, grass roots insurgencies, and various hybrids of these main types. It functions at the local, regional, state and national level and roughly parallels the governmental and quasi-governmental authorities it monitors and seeks to influence.

Kendrick points out that the potential for the advocacy movement to mobilise people can be prodigious, with a dynamism derived from “[…] its own distinct “currency” of passion, commitment, inspiration and courage… all of which need constant propping up.” [p.13]. He alerts us however to the very real possibility as he sees it that the advocacy movement may "be unwittingly undermining the possibility of citizens’ movements of alliance and defence of person’s with disabilities, even as it strengthens their interests in other ways." [p.13]. Through the process of bureaucratising and professionalising advocacy, he argues, it can become remote from those most marginalised individuals whose interests it exists to serve.


In 2002, the Journal of Learning Disabilities carried an article entitled ‘Partnerships, advocacy and independence: Service principles and the empowerment of minority ethnic people’ [23]. Essentially, this study identifies that cultural assumptions about what defines “independence” within some advocacy services, excludes (from genuine engagement) many people from some minority ethnic communities. Based on the findings of their research, Mir and Nocon point out that "[...] a service that empowers minority ethnic users must combine the elements of access, cultural and religious sensitivity and specific support.” [p.159].

Services and procedures that are based on the values and lifestyles of the ethnic majority are often inappropriate to people from minority ethnic communities, resulting in low take-up and lack of opportunity: applying service principles in the same way to all communities will not lead to empowerment for all communities. The authors conclude that "inequalities in service provision are sustained and perpetuated through a cycle of inappropriate services and low take-up." [pp.160-1]. According to the findings of their research, the authors conclude that it is the failure both on the part of mainstream services and advocacy providers to engage with Black and Minority Ethnic learning Disabled People which compounds their unequal treatment, perpetuating their segregation and marginalisation from and within services.

Also in 2002, an article appeared which described a survey of self-advocacy groups for adults with learning difficulties in the West Midlands. The article, printed in the Journal of Intellectual Disabilities [65], did not report the findings of the research, but did discuss the various stages necessary and some of the complexities of ensuring that meaningful engagement occurs when conducting such a large scale survey. In particular, the need to ensure that consent is genuinely obtained from people, many of whom typically provide an acquiescent response, and the requirement to ensure that materials used are accessible and ask relevant questions is also explored. This raises important questions about how to conduct honest interactive evaluations of experience which engage people with learning difficulties in more than a superficial way.

An inadequately researched area of investigation concerns the extent to which advocacy services engage with people with a label of autism. In 2003, The National Autistic Society published ‘The Demand for Advocacy’ [33]. This discussed the need for advocacy amongst autistic people, identifying that it is needed in the following areas:

“Transition to adulthood and adult services Access to housing Access to employment Assistance with social integration and life planning Access to health services." [p.1].


This article draws together findings from various sources and evidences the very limited and inadequate provision of advocacy services for people with autism. It is written from the perspective of those providing services (in the voluntary sector) to neuro-diverse people. It does not explore the need for service user engagement, but does starkly highlight the disregard across existing advocacy provision for people with such labels. It points out that "People with ASD are falling through the gaps between mental health and learning disability advocacy providers." [p.2].

In 2004, Disability & Society carried an article entitled ‘Defining and organising self-advocate centred groups: implications of survey research of self-advocacy groups in Japan’ [13]. This article reported the findings of a quantitative survey study from Japan which analysed the extent to which self-advocacy groups of people with learning difficulties can genuinely be said to be independent of (rather than dependent upon) advisors without learning difficulty labels. The research set out to test the premise that self-advocacy groups which draw upon and recognise the (assumed) strengths and skills of “advisors without disabilities” [sic] and those “with intellectual disabilities” [sic] would work (and engage) most effectively as they reflect inevitable interdependence. An underlying assumption of this research appears to have been that people with learning difficulties are incapable of appreciating the social structures which lead to their oppression. Perhaps significantly, the research was conducted largely at a conference of an organisation run by parents of people with learning difficulties which “included” people with learning difficulties but which was not entirely run by them. Nonetheless, a number of significant findings emerged about the attitudes and differences between reasons for involvement in the self-advocacy movement of parents as opposed to those of ex-welfare workers in Japan. Parents were primarily motivated by supporting their offspring whereas ex-welfare workers were predominately motivated as a result of their alienation from and by the established framework of social care and related systems.

The article also explores the notion that independence equals doing everything for oneself. In particular, it highlights the mistaken belief that the most successful self-advocacy by people with learning difficulties is that which promotes self-reliance (and an assumed consequent lack of interdependence on or support from and engagement with non-disabled people).

It may be viewed as regrettable that self-advocates were not afforded the opportunity to become involved thoroughly in conducting and analysing the results of the survey. The authors comment that people with learning difficulties “[…] were not comfortable discussing complex areas such as the hypothesis, methodology and concept of the research." [p.635]. The research was based on an assumption that through experiencing conflicts, self-advocates and advisors would come to recognize (and value) differences in their thoughts and experiences, and that this recognition would lead them to discover what advisors can and should do, and what self-advocates can and should do, in building a


collaborative and effective self-advocacy movement among learning disabled people. It is telling that the authors observed that those groups within which learning disabled people enjoyed the greatest degree of autonomy and empowerment were those within which non-disabled advisers played a marginal role. They comment that "[…] the groups in which advisors speak freely tend not to be self-advocate centred groups." [p.644].

The researchers conclude that “[…] current self-advocacy groups are still too immature to develop collaboration." [p.644]. They highlight methodological difficulties that arose with their research stating that "[…] there are problems of using quantitative research only." [p.644]. They do not however go so far as to highlight what might be fundamental flaws in the hypothesis for their research.

In the same year, Mencap published its ‘Advocacy Strategy’ [29]. It makes some telling points about Mencap’s understanding of the importance of user engagement being central to advocacy. The document appears primarily to be concerned with how Mencap should compete with other advocacy services to obtain Government funding for advocacy which was linked to the Valuing People White Paper so that it could undertake the advocacy which is funded. Although no explicit reference is made to this anywhere in the strategy, this implicitly included (competing with) self-advocacy groups of people with learning difficulties. Disappointingly, this document contains scant reference to the need for the views, wishes, and priorities determined by people with learning difficulties to drive or be central to advocacy. No clear explanation or understanding of different forms and types of advocacy and their merits or different possible applications is reflected in this document. Fundamentally, this document has an introspective approach towards understanding advocacy and its role, viewing it as solely the province of those who advocate on behalf of “people with learning disabilities” [sic]. A striking example of the problematic approach adopted in this strategy is reflected in Mencap’s statement concerning the advocacy it wishes to be commissioned to undertake on behalf of sections of society which the strategy describes as being “[…] more difficult to speak up for – like people with profound and multiple disabilities, children and young people, and people from minority ethnic groups." [p.13].

In 2005, ‘Speaking Out: A guide to advocacy for young learning disabled people in transition (14-25 years)’ [54] was published. This set of compelling and powerful accounts about the practical impact different forms of advocacy can have upon the lives and life chances of young learning disabled people is discussed in detail in [Section 6] of this report, which addresses children and young people’s advocacy.

From the same year, two items of grey literature have been selected for inclusion in this review. ‘Celebrating self advocacy: What we have done over the years’ [61] is a report produced by Self Advocacy in Action, providing an historical perspective of their self-advocacy group based in Leicestershire. It is written from


the point of view of members of the group and is rich in examples of how people with learning difficulties themselves define self-advocacy. The report states that self-advocacy “[…] is about giving everybody a chance, not just the people who know how to say things well or who can shout the loudest.” [p.6].

It is particularly significant that contributors to the report state that self-advocacy is not about getting one’s way all of the time, but that if clear explanations are given as to why decisions have been reached which may mean that someone does not get what they want, this is acceptable. In other words, a theme of honesty and engaging with people as adults rather than as children who are protected from reality emerges in this document.

This report contains the very clear message that people are empowered through becoming self-advocates. It suggests that empowerment is one of the most important ways in which self-advocacy may be different from some other forms of advocacy, which can create and perpetuate dependence on others and not (necessarily) enable individuals to challenge decisions and actions towards them or the way in which services are run.

The group organises and delivers conferences, events and training courses. Doing this has had a major influence upon the self-confidence of group members, who describe self-advocacy as a way of life and not just something that takes place once a week. Self-advocacy (the report states) “[…] affects the whole of your life all of the time because it is about you, the things that matter to you and about other people around you.” [p.8].

The importance of the group being independent is also discussed, including the right to refuse invitations from service providers for the group to give talks and provide training. Crucially, the group believes that it is because service providers are not funding the group, that this independence can be maintained.

The other item of grey literature reviewed from 2005 was a report evaluating the impact of the Welsh Advocacy Grant Scheme [55]. This is an internal evaluation by the British Institute of Learning Disabilities (BILD) of a 3-year grant funded initiative in Wales for advocacy groups supporting people with learning difficulties in the principality. BILD was commissioned by the Welsh Assembly to oversee and monitor the scheme. Consequently this ‘end of funding’ evaluation focuses primarily upon the need for BILD and the schemes it supported to obtain continued Local Authority and Welsh Assembly funding. The report, perhaps inevitably, therefore focuses upon what BILD defines as the strengths of and (undoubted) continued need for such advocacy schemes. It does not, in the main, provide a robust analysis of the distinctions between schemes used by people with learning difficulties in Wales, in so far as their engagement with users is concerned. Nonetheless, it does contain some useful insights which serve to reinforce findings of other research that focuses more directly upon user engagement with advocacy.


A number of useful observations are made regarding limitations upon the capacity of advocacy services to engage with people, especially with regards to the most excluded sections of Welsh society. The report comments that "Because advocacy organisations already feel that their resources are stretched, they do not advertise their services or reach out to those groups that need additional time and specialist training to work with." [p.54]. With regards to those who do engage with schemes, the report states that “there is no assessment of how accessible it is for those who request it, or why they may benefit from advocacy input." [p.51.]

The report tackles the persisting unequal treatment on the grounds of race by advocacy providers in Wales: "[...] there exists a tendency to assume that people of Black and Minority Ethnic origin prefer to work out issues within familial structures." [p.49]. "It is often the case that the smaller the minority, the less visible and more marginalized it becomes." [p.49].

Writing in 2005, BILD observes that “twenty years have passed since the inauguration of the All Wales Strategy. It seems, regardless of ambitious structural change, discriminatory attitudes and prejudice remain the same." [p.11]. Discussing the dilemmas facing small and poorly funded advocacy service providers in Wales, the report identifies restrictions upon the ability of advocacy schemes to engage more widely, stating that “there is a need to identify how people should “move on” to ensure there is the capacity for new members, but also allow the existing ones to continue to express their views and concerns in order to bring about changes in their life." [p.38].

In contrast to the 2003 article published by the National Autistic Society [33], emancipatory research led by 6 people with learning difficulties and one non-disabled academic in the North West of England explored issues of engagement with advocacy by people labelled as autistic. Disability & Society carried an article [11] which summarised the findings of this research. The focus groups, interviews and other interventions undertaken by the action researchers leading this project laid great emphasis upon obtaining the views of people with a label of autism. Some examples of the types of contribution regarding engagement obtained from neuro-diverse focus group participants include: "It’s hard to find a voice in meetings. […] Meetings are not accessible for people with Asperger’s. […] People talk over me all the time, it’s as if I’m not there." [p.529].

This research arose as a result of a self-organised group of people with learning difficulties recognising that their services excluded people with a label of autism and people with a label of Asperger’s Syndrome. The research clearly showed that there was a great desire for control over one’s own life amongst the individuals involved in the study. It echoes the dearth of appropriate advocacy support for people with a label of autism identified in the 2003 research conducted by the National Autistic Society [33].


Whilst identifying that group work was not always appropriate for advocacy with and on behalf of autistic people, challenging models which ensure the maintenance of a social approach to autism are recommended by the researchers as a result of the findings of their work. The authors write "Groups could establish self-help principles and the sharing of experiences, which would again relieve feelings of isolation." [p.533].

Continuing with the theme of inclusive approaches towards research about advocacy, in 2007 SCIE published a collaborative position paper entitled ‘Supporting Self Advocacy’ [71]. This research reflected the findings of a workshop led by people with learning difficulties which explored the wider impacts, implications and power dynamics of peer and self-advocacy amongst people with learning difficulties. A number of important findings emerged from this work. From conducting this research, SCIE found that members of self-advocacy groups help each other to speak up. They get to know one another well and thereby understand better the different types of support people might need. Perhaps the (most) crucial factor to emerge concerned the importance of people with learning difficulties being able genuinely to exercise freedom of choice. People deciding themselves upon the support they need lead to those who had previously been labelled as having so-called ‘challenging behaviour’ being supported to express themselves and the things that they wanted to do and say.

The report found that many self-advocates “[…] are active citizens and need support not just with day-to-day issues but also to get involved in ‘mainstream’ or community groups such as political parties or action groups.” [p.27]. The research found that it is important for self-advocates and those who support them to get to know each other well. Supporters need to take time to find out how people communicate.

Importantly, in terms of peer advocacy, the research found that “[…] people with a learning disability give at least as much support as they receive.” [p.27]. Especially with regards to engagement and the exercise of choice, the research found that the views expressed by participants included the belief that people sometimes “[…]need support to make choices. This includes the choice not to go to a meeting or not to have support.” [p.31].

Finally, with regards to this research, the workshop concluded with participants designing posters, elements of which relate directly to issues of engagement. The points made regarding the need for effective support for peer and self-advocacy included that it:

• “Tries to support us at our own pace even when there is pressure to rush something • Looks for positive opportunities for us to influence what is happening and change things


• Asks other organisations or people to make their information accessible and challenges those that don’t• Helps us to talk through plans and decide what to do• Accepts that everyone has a right to be involved. Works hard to ensure people who need lots of support are not left out• Can take criticism and learn from ‘mistakes’• Encourages us to think beyond learning disability issues. Helps us see the bigger picture.”[p.37].

In October 2009, SCIE also published a report entitled ‘Personalisation and Learning Difficulties: A review of evidence on advocacy and its practice for people with learning disabilities and high support needs’ [48]. It reflects a current and highly relevant survey of advocacy support available to people with learning difficulties who experience barriers to communication. Re-visiting the research published in 2007 by SCIE [71] this report points out that “[…] a lack of skills, understanding and provision of advocacy for people with high support needs could mean this group missing out on opportunities to shape not just their individual support but also wider planning." [p iv]. It goes on to recognise that "perceptions about the influence of people who use services with high support needs on service development [are] that they have often not been included due to lack of ability to speak for themselves, by being in segregated services, or [because] of the impossible burden on relatives and carers to take this on on users’ behalf." [p iv].

This research highlighted that the ideals of citizenship and community expressed in ‘Valuing People’ are less of a reality for people with high support needs than they are for other people with learning difficulties.

In line with the conclusions drawn by Priestly [45] SCIE identified that it is important to support decision making by those who experience barriers to communication through a strong commitment to “maintaining a belief in their capacity to contribute to their own support and recognising their personal history and preferences including their culture.” [p.6].

The survey conducted as part of this research set out to provide additional practice-based information on advocacy for people with learning difficulties and high support needs to supplement the evidence from the 2007 research review [71]. The practice survey offers a day-to-day description of and commentary upon the functioning and effects of advocacy services. It observes however that: “The available research suggests a need for tools to support independent evaluation and measurement of effectiveness of different approaches” (towards advocacy in this context). [p.7].

The survey provided few examples of good practice. There were also few examples from the practice sites of specific evidence concerning communication or advocacy with people from Black and Minority Ethnic communities.


Concurring with the conclusions drawn by Aspis [16] SCIE found that: “If the focus is on self advocacy as a means of planning services, it can become a tool for finding out what people think about services, rather than challenging whether those services should exist at all.” [p.34].


SECTION 3 – GENERIC ADVOCACY

A total of 20 documents (almost 27% of the literature which was reviewed for this report) covered different aspects of user involvement and engagement with advocacy provided in a generic context: by ‘generic’ we mean advocacy services provided to more than one distinct segment of the community; across more than one service delivery area; and / or across multiple specifically identified communities of interest. The earliest text we studied was a brief pamphlet published in 1993. Entitled ‘the U.K. Advocacy Network (UKAN)’ [57] the pamphlet is a summary of the history and origins of UKAN which was a grass roots network of mental health advocacy and other user involvement advocacy groups with an office based in Sheffield. This is the earliest example that we have been able to locate evidencing collaborative working across user-led advocacy providers. Searches seem to indicate that this organisation may no longer exist in anything other than a virtual sense.

A user-led training and consultancy agency working mainly in the fields of health and community care, was commissioned in 1997 to conduct a qualitative primary research and literature review entitled ‘Shaping our Lives: Interim Report’ [59]. The interviews and focus groups conducted for this review were with a range of individuals representing a cross-section of 9 user-led groups providing generic advocacy services, often as part of a broad range of user-led services. The models of advocacy adopted by these user-led groups were peer and self advocacy. Whilst the report relates directly to user-defined outcomes of community care services, it has much which is useful to say about user experiences of advocacy and contains many helpful insights into the power of service users working collectively.

The overall impression created by this report is that “people are so used to existing within the constraints of typical service provision - and the general constraints imposed by society on the groups of people who are community care service users - that the concept of actually looking at the outcomes that result from service provision is a new one." [p.2]

It emerges through the interviews and focus groups in this report that one of the difficulties of defining empowerment achieved through peer and self advocacy is that it is “a term often used without being clearly defined and that it has varying meanings.” [p.7]. A contributor to one of the focus groups commented about the type of support with which she felt most comfortable and empowered. She preferred to work with someone “[…] who speaks my own language, from my community, my background. I need somebody who I can speak to when I am in crises who will not be judgmental.” [p.7]. A contributor to this research from the (since renamed) Derbyshire Centre for Integrated Living commented regarding empowerment: “You can demonstrate empowerment by the disempowerment of the authorities. There's always a transfer of power, just as there is with energy in the laws of physics” [p.7].


A mental health system survivor contributing to this research commented powerfully regarding the potency of peer and self advocacy: “I've been through the system and I know what I have been through, so I can help other people in the same position." [p.9]. Affirming a well-established principle, of advocacy one contributor commented: “It needs to be independent and (led by) people with experience as users." [p.12].

A lengthy citation has been incorporated next which reflects a strong undercurrent evident in this research. It is particularly important for this review of user-engagement and experience as it goes to the heart of defining what is meaningful involvement and engagement and in particular how such activity can genuinely be said to influence or bring about change within advocacy services and beyond. “There are people who have given a lot of time, thought and effort and are now disillusioned about how little difference that (involvement and engagement) has made to what's being done. Some of us actually feel over consulted. I could be a full-time consultee, 40 hours a week. I am willing to do that if you pay me £20,000 a year, which seems to be the going rate for such inside knowledge. We've got a tremendous amount of experience of consultation and research and many of us are becoming disillusioned at how much of it is being done to so little effect." [p.24-25].

There is criticism of organisations which have the occasional user representative and then claim that they are involving service users. Such tokenistic approaches are dismissed as being all too common and insulting.

Importantly, of self and peer-advocacy, one contributor commented about the value of the ‘group’ as providing ‘a collective voice’. She commented that: "before we all felt that we were separate little voices crying out and we all thought it was just a problem of our own and possibly of our own making, because that's the way they make you feel.” [p.27]. One member of a peer / self advocacy group commented: “Just going to a service where all of the professionals are white and it is a white dominated organisation... You don't feel part of that, you feel alienated. Just being able to speak to somebody who speaks your language makes a big difference… but most (statutory) services are not taking that on board." [p.29].

In 2000 writing in Disability and Society, Andrew Azzopardi reviewed his research in an article entitled ‘A case study of a parents’ self advocacy group in Malta. The concepts of ‘inclusion, exclusion and disabling barriers’ are analysed in the relationship that parents have with professionals’ [14]. This is a comparative study from Malta of a parent’s self-advocacy group. It is about a research project which focuses upon the issues and philosophical (activist) stance adopted by a group of parents of (mainly) people with learning difficulties in Malta. It highlights the conflicts between the group and professionals and explains the individual and collective basis for the group’s stance and approach.


It touches importantly upon the value and impact of the group in shaping not just improvements in services but in altering the philosophical outlook (and willingness to challenge what are felt to be negative decisions and actions) of “professionals”. Tensions between academics, learning and physically disabled people, parents and professionals external to the self advocacy group are explored.

Commenting upon culture shifts within the self advocacy group of parents achieved, Azzopardi believes as a consequence of their involvement with the group, he writes: "Parents have moved from encouraging and advocating for segregation to integration, from normalisation to inclusion, continually finding ways […] to interpret […] needs in the particular historical context." [p.1068].

Interviewing a parent about the impact upon her of involvement with the group of disabled activist advocates, allies and other parents, one mother comments to Azzopardi: "My difficulty (as a mum) is not in the acceptance of my son’s differences, but in accepting society’s need to try and remould him into something within an ‘acceptable norm.’” [p.1065].

Discussing issues of power and control which have emerged as a consequence of the activities of this self advocacy group, Azzopardi states that: "Self-advocacy needs to be seen as a process of societal adjustment to the requirements of the disabled minority and not vice versa." [p.1066]. He interprets the effect of the group as having achieved a substantial shift in the demands and expectations amongst disabled people regarding their desire to exercise greater choice and control over their lives, by seeking to manage the support services they use. Discussing this, citing Oliver and Barnes (1998), Azzopardi writes that self advocacy: ”[…] has increased pressure on the disabled community to put pressure on their organisations for control of the services on which they are compelled to rely.” [p.1066].

From 2001, we considered the first of two further comparative studies from Ireland entitled ‘Advocacy: a rights issue. A reflection document.’ [68]. This document adopts an extremely broad perspective, considering contributions from a wide range of interest groups which are made up of or provide services to disabled adults and children. It is primarily concerned with the needs for advocacy amongst disabled people living and / or working within enclosed environments i.e. residential settings, workshops, prisons, hospitals, nursing homes, children’s homes, and total institutions. The document also acknowledges that disabled people can equally be in vulnerable situations, when they are homeless or living with their family and that in such circumstances advocacy can play a vital role to protect and empower disabled people. Donal Toolan writes: “To move to where Disabled People and others are to have full citizenship and equality through the enactment of effective laws and policies, Advocacy must be recognised as a pivotal aspect in those rights being realised.” [p.3-4].


Rosaleen McDonagh who is a disabled person and was (at the time) Chairperson of the National Traveller Women’s Forum, comments: “advocacy and the role of advocates are central to collective and cultural change […] its about actual words that articulate an experience of vulnerability and oppression […] Discrimination is not just a one-off incident, it’s a schematic process, which annihilates your self-esteem and ultimately breaks or shapes your identity. Advocacy is about not colluding with the system or the status quo. As a disabled woman, my advocates come from two different communities: the Traveller community and the Disability Community. Advocates actually explain what sexism or racism is and then leave you with the tools to tackle the specific issues in your life.” [p.4]. The report identifies that disabled travellers experience multiple oppression. This is attributed by the report’s authors to the prejudices and barriers experienced by disabled people combined with cultural stereotypes which exist about the traveller community. The report comments that: “[…] advocacy can be a determining factor in instilling a sense of pride in people who have been damaged badly by a system.” [p.26]. Traveller advocates, the report states are: “essential in addressing the lack of Traveller representation within services.” [p.27].

Writing about the largely hidden experiences of the substantial number of mental health system users within the prison system, Valerie Bresnihan, Chairperson of the Irish Penal Reform Trust writes: “Those who are mentally ill are too often subjected to solitary confinement as ‘treatment’ for their disability.” She goes on to comment that advocacy can: “[…] help give a voice, however indirectly, to those most silent of all […]” [p.5] mental health service users within the criminal justice system.

This report draws parallel conclusions to those derived by Aspis [16] and Goodley et al. [28] concerning the limitations of service-contingent advocacy, especially that which is provided for people with learning difficulties. In Ireland, the ‘Service System Model’ is based within the services in which people live and work (institution, residential centre, hostel, workshop, daycentre, hospital, nursing home). This type of advocacy, the report points out, is dependent entirely upon the service itself, including its staff, resources and ongoing support from the service. Apart from its dependence upon the service, other problems inherent within this approach to ‘advocacy’ are highlighted in this report: “A common characteristic is that members reflect the more able and articulate service users, and knowledge and experience are centralised on a particular few.” [p.20].

In 2002 on behalf of the Office for Public Management (OPM) Silkap Consultants [51] published a well researched set of standards to be applied when setting up or monitoring and evaluating the work of advocacy organisations providing services to people from Black and Minority Ethnic communities. The standards are particularly applicable, it is argued, for Black community organisations. The document identifies a set of user expectations of advocacy service providers.


Whilst some of these are specific to organisations providing services to people from Black and Minority Ethnic communities, many of the expectations could probably be said to apply almost equally to non-BME service users.

In common with the conclusions drawn by Rai-Atkins [26] concerning provision for Black and Minority Ethnic mental health system users and Downer et al. [60] concerning Black and Minority Ethnic people with learning difficulties, this report identifies important issues regarding the need for providers of generic advocacy services to engage meaningfully with Black and Minority Ethnic Service users. The authors identified from their research with Black and Minority Ethnic service users some principles for advocacy organisations to use. Some of the principles they identified were that service users need a relationship with someone who:

“· listens to and respects their views and opinions; · is not judgmental (about their culture, religion, accent, dialect, political affiliation or the situation of their home country), condescending or discriminatory;· is sensitive to their cultural and religious needs; [...]· has good bilingual skills; […]· offers them continuity across service and geographical boundaries;· improves their awareness of their rights and of the range of local health and social care services." [p.20].

In 2003, Comhairle published ‘The jigsaw of advocacy’ [67]. Comhairle is an Irish generic provider of support and assistance to disabled people and others seeking to access their entitlements to Social Services. This comprehensive report explored the patch work of funding and strategic support for advocacy services across Ireland, and appears to have been drawn up in order to lobby for a more sustainable infrastructure to support advocacy services. Chapter four of the report focuses in particular upon the views of advocacy service users concerning their engagement with Comhairle. It highlights some disquiet and concern amongst service users regarding the possible implications of centralising influence over and funding for advocacy services in the way possibly anticipated by Comhairle. A contributor representative of the views expressed of those attending a focus group conducted by the authors to inform this research, sums up the dilemma offered by a centrally resourced umbrella body for advocacy such as that for which it appears Comhairle is lobbying. They say: ”We need Comhairle to be a friend and support to us but the service must be independent. It is nice to be under an umbrella organisation for funding and so forth but without the control.” [p.58].

Interestingly, the report authors conclude regarding these concerns “[…] the ideal of independence will have to be tempered with the practicalities of funding and accountability (to funders).” [p.59].


In the same year, the UK charity Scope published its report entitled ‘Advocating for equality’ [49]. It contains a summary of findings and recommendations arising from Scope’s research into the patterns, prevalence and funding of advocacy services for people with physical, sensory, communication and profound and multiple impairments. This is (essentially) a lobbying document which argues for sustainable funding and a statutory framework for local (Scope) advocacy projects working specifically in the areas identified (above). This document does not place any emphasis upon the need for ‘good’ advocacy schemes to engage with the people who use them.

Two documents focusing (primarily) upon generic advocacy services in London were considered from 2004 for this literature review. The Kings Fund published ‘Building bridges for health. Exploring the potential for advocacy in London’ [27]. This report provides a useful ‘photograph’ from that time of the state of advocacy services in the Capital. It contains a useful set of recommendations about how the provision of advocacy can be made more consistent through statutory funding (and regulation) but acknowledges the resistance to this which exists in some parts of ‘the advocacy movement’. It stratifies broadly the breakdown of advocacy services in London at the time the report was written. It also provides an informative and succinct explanation of the comparatively strong position of advocacy in Scotland and in Canada. It does offer, in parts, contentious recommendations for the sustainability of advocacy and its role in relation to statutory sector services. Arguably, the Kings Fund’s analysis pays insufficient attention to what might be viewed as the overriding need for advocacy to be independent and accountable to service users. Although it is somewhat dated by now, a breakdown (into communities of interest) of the various categories for and proportions of advocacy providers in London appeared in this report (Figure 1 below):


(Figure 1)

The Kings Fund report flags up the implications of the distinctions between the statutory frameworks for advocacy in Scotland as opposed to the rest of the United Kingdom. It points out that the Scottish statutory requirement “[…] relates to generic ‘advocacy’ not ‘mental health advocacy’, ‘complaints advocacy’ or ‘bilingual advocacy’, and is therefore a more holistic approach than that taken in England." [p.32].

In the same year, Action for Advocacy published an impact assessment of advocacy across London [02]. This document which has a boarder focus than that adopted by the Kings Fund report [27] explores the impact of the Advocacy Charter upon the work of advocacy organisations in London and beyond. Whilst dated to some extent, it is useful in providing food for thought in terms of the concerns expressed about creeping statutory sector influence over the advocacy agenda and the consequent exclusion of service user views and involvement. Arising from the concerns expressed in this document, a key issue for consideration by ACUK and others must be whether or not a National Service Framework (NSF) would endanger genuine independent service user engagement and involvement. This report evidences wide spread acceptance and use of ‘The Advocacy Charter’ which, it points out, has been translated into various languages and a range of accessible formats. It appears popular because it contains straight forward rules offering a consistent and robust approach towards the delivery of independent advocacy at the core of which are the views and wishes of those that use advocacy services. The proposal which formed a backdrop to this report that a set of advocacy standards be generated, did cause some consternation. The report states that: "[...] concerns were


expressed that standards might be imposed on advocacy schemes by central government […]” [p.5]. “[…] the Principle of Independence received the most comments, with common concerns about and from advocacy schemes associated with service provider agencies and schemes funded by local authorities.” [p.10]. The desire to demonstrate independence unconstrained by centrally imposed standards which may be influenced by funders remained an overriding concern.

Two journal articles have been selected for inclusion in this literature review from 2005. The first of these, ‘Advocacy in practice: the troubled position of advocates in adult services’ [04] from the British Journal of Social Work, was commissioned by the Nottinghamshire Social Services department. It set out to challenge the assumption that advocacy is always a positive and enabling experience. It reviews advocacy in the context of its relationship with social work managers, practitioners and ‘clients’. The authors claim that previous research has judged the effectiveness of citizen advocacy (CA) solely through the accounts that people give of their relationship with their advocacy partners. This method, they conclude, captures the process of advocacy but does not provide an insight into the outcomes for people on the receiving end. It briefly describes the 3 methods (hitherto) used to evaluate advocacy:

1. Citizens Advocacy Program Evaluation [CAPE] O’Brian & Wolfensberger 1979 [which relates to citizens advocacy schemes but is more relevant to the North American context].

2. CAIT, Citizen Advocacy Information and Training, evaluation pack [which works by comparing how a scheme works in practice when measured against its own aims and objectives and against widely held citizen advocacy principles. It is an intensive, team-based evaluation, which focuses on principles rather than on outcomes for users].

3. ANNETTE, [which was developed by an advocacy network in Newcastle in response to purchasers needing to find out whether advocacy was effective. It is judged to be cost effective and easy to use, but focuses on measurable outputs which may be at the expense of developing a bigger and more complex picture of advocacy processes and outcomes].

A survey of Nottinghamshire schemes was undertaken. Access to service users was obtained through citizen advocacy organisations. Partners were predominantly positive about the difference advocacy had made to their lives but they also commented on the need for service providers to recognise the value and importance of advocacy so that it could become more effective and available. The researchers’ findings confirmed evidence in much other literature discussing this topic which indicates that advocacy benefits people; that it is under-funded; and that there is unmet need for advocacy. The researchers did find that in some instances service users were not clear about their relationship with advocacy providers or their rights within an advocacy scheme. This report does highlight the importance of advocacy remaining independent of (other)


services and the need for further research which accurately gathers evidence about service user experiences of and engagement with citizen advocacy. The authors also usefully distinguish between the possible ‘enabling’ role of gatekeepers within statutory services and the role of independent citizen advocates. In this regard they state that: “[…] there may be accounts marking the tension between the pure CA approach (speaking up for) with a more focused approach that health/social-care practitioners might use in order to work towards the person’s interests.” [p.332].

The second article taken from the British Medical Journal [03] summarises the programme and content of an international conference of health professionals discussing advocacy. This article casts no useful light upon the issues of service-user engagement with, or experiences of, advocacy.

The first document considered from 2006 is a position paper published by the (now defunct) Disability Rights Commission (DRC) entitled ‘Delivering the choice and voice agenda: the role of independent advocacy services’ [20]. In this paper, the DRC reviews the legal position regarding entitlement to advocacy amongst different groups of people eligible to use community care, housing, health and other (public) services. It highlights the fragmented and poorly funded nature of these (advocacy) services and touches upon the benefits to be derived from user engagement with such services, in particular focusing (in this regard) upon how user engagement with advocacy brings about improvement to other (mainstream) services. The report states that: "Independent advocacy can play an important role in assisting service user voices to be heard.” [p.8]. The DRC affirms its commitment to ensuring that the views of people using services are taken properly into account when reaching a judgement on the quality and performance of a particular service and reiterates its belief that this can best be achieved through the provision of genuinely independent advocacy that engages with and involves those eligible to use services.

In 2006, the Journal of Epidemiology and Community Health carried an article entitled ‘Community health advocacy‘ [41]. This article provides a new perspective on advocacy as a collective (political) response from an identified community (or community of interest) to a perceived injustice or need for change. It contains echoes of the emphasis placed upon the importance of ‘community advocacy’ within Black and Minority ethnic community organisations by SCIE [47] and the role of political collective advocacy explained by Henderson [46]. The article cites Greenpeace, various HIV campaigning groups and others to illustrate the power of collective community engagement with advocacy for change. In the article, Sana Loue, states that: “the concept of community organising is premised on the idea of empowerment, which is ‘a process of collective reflection and action in which previously isolated individuals become protagonists in shaping society according to their shared interests” [p.459]. Loue cites examples of successful advocacy which often adopts a collective, bottom-up approach. These include efforts by likeminded individuals to establish rape crisis centres and


needle exchange programmes. Loue contrasts such approaches with top-down approaches towards advocacy which “[…] emphasise the identification of needs or goals by experts outside of the community or by only the community leaders." [p.459].

From 2008, ‘A voice through choice. Stories about independent advocacy’ [50] provides a helpful (comparative) perspective from the Scottish jurisdiction, written largely from the points of view of service users. Published by the Scottish Independent Advocacy Alliance, this is largely a collage or mosaic of different individual advocacy stories. Embedded throughout these accounts is evidence of the beneficial impacts of service user engagements with a diverse range of individual and collective advocacy. The report highlights the value of and a need for a diverse range of advocacy services which provides the best choices for individuals. This includes, according to the report: “[…]individual professional advocacy; collective advocacy; citizen advocacy and support for self-advocacy." [p.59].

Sprinkled throughout the report are powerful examples of the impact upon self and peer advocates as well as upon the wider community of collective advocacy. One such example was a highly successful anti-bullying pack produced and prompted by a network of young peer advocates. Their enthusiastic approach eventually obtained the official backing of established services and was said to have a discernable impact upon culture within schools and the attitudes of, students, teachers, parents and the authorities towards bullying within these institutions. A contributor to the report states that: “advocacy is not just about speaking out, but also about building the skills and confidence to do this in a way that people will listen to and respect what we are saying." [p.115]. Other contributors to the report cited the powerfulness of self and peer advocacy groups such as People First. Writing in the report, one contributor states: “When I first started going to People First meetings I didn’t have the confidence to stand up and say what I thought about the things that affected my life." [p.163]. Many self advocacy groups emphasise the importance of change taking place within the individual themselves. They attribute this change to the empowerment derived from ‘the group’. Another contributor to the report who was a member of People First commented: “Change also needs to happen in the way that people are seen and treated by other people. We think laws, policies and services need to change. We campaign on things like harassment, employment with a real wage, information that’s accessible, hospitals closing and people having a good life in the local community in a house of their own. Over a long time, we have fought to get a voice for people with learning difficulties." [p.164]. Finally, perhaps the most important distinction evident between the views and expectations expressed by those interviewed for this report and many of those who have contributed to research concerning user engagement with advocacy services elsewhere in the UK, is the comparative confidence in the continued existence and funding for advocacy due to the nature of the statutory funding regime which exists to support it in Scotland.


In 2008, a ground-breaking conference organised by a Sheffield-based, user-led peer and self-advocacy network of disabled asylum seekers and refugees took place. The conference was held on 3rd December, which is the International Day of Disabled People. It was organised by the group which calls itself ‘No Barriers No Boarders’. At this conference the group launched a report [35] to celebrate its achievements and highlight the discrimination faced by disabled asylum seekers and refugees. The report makes it clear that disabled migrants to the UK do not have their needs for advocacy support met either by official refugee organisations nor are they met by Disabled People’s groups in the main. No Barriers No Boarders conclude the report with a number of recommendations concerning how services need to improve in order to better meet the needs of disabled asylum seekers and refugees. With regards to the hinterland between disability and refugee organisations, the report recommends that those wishing to bring about better advocacy services for disabled asylum seekers and refugees, identify the range of advocacy and peer support services which exist and the type of support they provide, working with local organisations of disabled people and refugee groups “[…] to ensure that they welcome, include and understand issues facing disabled asylum seekers and refugees." [p.20]. The reports authors challenge the barriers to disabled asylum seekers and refugees exalting readers to do likewise. They state: “Our work will continue to challenge the institutions and policies that seek to exclude us – we will win our battles and we ask everyone to join with us in that struggle." [p.1].

Finally from 2008, we read ‘Nurses practice beyond simple advocacy to engage in relational narratives: expanding opportunities for persons to influence the public space’ [43]. This is a comparative study from Canada which adopts a looser definition of advocacy than that which has been broadly accepted in the UK advocacy movement: in particular, impartiality and independence are not always considered central to the role of advocate. Likewise, an advisory and information-giving role is often considered to be a legitimate not to say central function of some advocates.

The article explores the impact nurses have upon their clients’ self-awareness when they advocate for them. It focuses upon the impact such advocacy has on those who experience health inequalities and marginalisation. It uses highly complex language to argue in favour of nurses ‘empathising’ with their patients so as to influence their (the patients’) capacity for self-awareness. The moral stance and ethical approach adopted for this highly subjective qualitative study is perhaps apparent from the following passages. Murphy and Aquino-Russell write: "[...] nurses should share insights with their clients that they have gained through their suffering in order to assist these persons in the interpretation of their (own) suffering." [p.41]. The researchers cite a response given by a nurse informant during their ‘Snowball’ semi-structured interviews when describing his or her practice as “imagining what it is like [for] the person experiencing an event,


checking out his or her understanding of the experience, and working with the client’s response.” [p.43].

The report’s authors do go some way towards acknowledging the competing influences and pressures upon nurses which may at times interfere with their capacity to act as independent advocates for their clients, as they may feel that the ‘best interests’ of a patient are incompatible with the views of a patient concerning her or his preferred treatment choice. The report states: "In acting ethically, nurses are often preoccupied with ensuring clients have the information needed for making choices about treatment options overlooking at times that respect for autonomy entails regard for a persons’ ability to reason and clarify their deeply-held values." [p.43]. This goes to the heart of why service providers may often not be suitable (independent) advocates and may in fact inadvertently cause patients to disengage from the advocacy process, at worst viewing it as part of the system rather than being independent of it.

In the best case scenarios however it is evident that nurses can enable patients to engage constructively with and support change within policy and practice. This is likely to occur only where the views expressed by a nurse genuinely coincide with the wishes and aspirations of their patient. Under such circumstances the authors state that the evidence they accumulated supports the view that: “[…] nurses who engage in relational narratives with community members who experience health inequalities may assist them to influence health policy- making." [p.44].

Four documents have been reviewed from 2009 in the area of generic advocacy provision. Firstly, ‘Proven practice: self-advocacy for those with high support needs’ [07] was read. The general message conveyed by this article is that people with communication barriers often do not get advocacy; it can have a huge impact upon their lives; when they do get it, ‘advocacy’ is sometimes done “to” them or “for” them rather than “with” or “by” them. The report breaks down into 5 possible models the range of approaches typically adopted by those advocating in this area: “rights-based, person-centred, Watching Brief (designed by Assist Advocacy in Staffordshire), witness-observer and best interest” [p.1]. This literature review does not explore in detail the definitions of, or distinctions between, these various models. Community Care magazine highlighted from the research on which the article is based two factors which are particularly relevant to the focus of this literature review.

The article recognises that there is inadequate research into the advocacy needs of people who experience communication barriers. For example, it recognises that: "Evaluations of outcomes for people with high support needs are limited, in terms of their involvement with advocacy services and self-advocacy." p.2]. As acknowledged elsewhere (for example by Priestley [45]), the article states that “[…] general principles of engagement with people with high support needs should be established." [p.1]. Overcoming barriers to engagement with advocacy


faced by those who experience obstacles to communication, may be a fruitful area for further in-depth qualitative research.

‘Human rights: a toolkit for advocates’ [01] is a useful brief lay person’s summary of how advocates can make use of relevant Articles of the Human Rights Act when advocating for advocacy partners. Published by Action for Advocacy, this toolkit does not shed any particular light on service user engagement with advocacy services however.

Finally, two documents from October 2009 commissioned and published by the Office for Disability Issues (ODI) have been considered. The latter of these two reports contains a detailed technical specification and framework for future research to be commissioned by ODI. This report, ‘A framework for research on costs and benefits of independent advocacy’ [36], contains a thorough and helpful cost-benefit analysis concerning the likely impact to be derived from future focused research initiatives which explore gaps in the current evidence concerning the value of advocacy for specifically identified groups of disabled people. As it is a document designed to shape future research commissioning by ODI, it does not explore directly issues of user engagement with advocacy, although the research areas it proposes are of course highly relevant to this literature review. This report arises as a consequence of the findings arrived at in both the evidence review [37] published alongside the framework and the (earlier) DRC review of advocacy services [20].

At the same time as the framework [36] was published, ODI also disseminated ‘Access to independent advocacy: an evidence review’ [37]. Prior to conducting the desk-based research and qualitative primary investigation which led to the generation of this review, ODI identified four areas in which it felt there was a particular lack of evidence concerning the impact and value of advocacy to disabled people. The report investigates “[…] the nature and extent of evidence relating to independent advocacy for disabled people at risk of losing choice and control […]:

● during transition to adulthood ● when the children of disabled parents are subject to safeguarding procedures

● when entry to residential care is a possibility ● when disabled people are victims or alleged perpetrators of anti-social behaviour.” [p.131].

The report contains a useful definition of independent advocacy and helpfully distinguishes between advocacy in general and independent advocacy in particular. It highlights gaps in the research evidence regarding the benefits of independent advocacy, both as a process in and of itself as well as gaps in the evidence about the benefits arising directly as a result of outcomes achieved through independent advocacy. ODI defines independent advocacy as support


for “[…] people who have difficulty representing their interests, to exercise their rights, express their views, explore and make informed choices." [p.20].

Reiterating the centrality of user engagement to effective independent advocacy supported by the DRC [20] ODI points out that its successor, the Equality and Human Rights Commission: “EHRC (2008) believes that all independent advocacy providers must strengthen their independence through governance arrangements, such as having management committees which include advocacy users, advocates and other local residents." [p.20].

Based on the findings of its research, ODI indicates that service users benefit directly from engagement with the advocacy process in a number of ways including:

“●more choice and control● improved empowerment […]● advocacy partner’s voice now heard● advocacy partner able to participate in community […]● increased awareness of access to rights● expectations raised● advocacy partners more actively involved in case conferences, planning meetings and policy making […]● improved social well-being and psychological health● improved self-confidence and self-esteem." [p.26].

Turning to the outcomes apparent as a consequence of user engagement with advocacy, ODI’s research indicates that these include:

“[…]● changes to how services operate● policies change● advocates get skills and jobs● advocacy partners get skills that help them to self advocate." [p.27]

ODI concludes the report by restating the need for further research into the value placed upon advocacy by disabled people in the four areas it investigated and beyond. The report states: “More information is needed about the number of people at risk of losing choice and control […] who may be able to benefit from independent advocacy." [p.132].


SECTION 4 – OLDER PEOPLE

The majority of the documents examined during the course of this literature review pertain to adult service users. In the case of self advocacy and peer advocacy groups, some service users will have been involved with these groups for a number of years. They may now be defined or described as older people. They might have chosen to stay involved with the groups because for many people, such groups provide opportunities for forming friendships and relationships and networking. They may involve an element of social activity which addresses the isolation of some members of the group. Individuals may feel at ease and safe in their dealings with the other group members, staff and volunteers. Many of those in receipt of other types of advocacy, e.g. citizen advocacy, may have received a service for a number of years and also now be of an age where they would be recipients of older people’s services because services are usually delivered on the basis of age, rather than need. Some service users may have found their advocacy group later in their lives when they have faced a difficult experience such as the death of a partner or parent, or they may wish to leave residential care after many years. Often they have not had knowledge of their rights, choices or advocacy provision but now find themselves in a position where the option of becoming involved in a self or peer advocacy group is available to them and they take up the opportunity.

The closure of large hospitals for people with learning difficulties entailed the transfer of many older service users into the community. Many of these individuals will have been older people who had spent many years in an institution but we have found that this issue has not been referred to in any significant manner during our perusal of documents relating to such closures. Many of the findings and comments included in terms of advocacy schemes delivering a service to adult service users, will also relate to advocacy that is being provided to older people.

It would be helpful if researchers and authors could indicate the age of adult advocacy partners when quoting them or recounting their stories as this would enable a more accurate picture to be harnessed when conducting literature reviews or examining information on the provision of advocacy. This will be particularly important for the future planning of services given the ageing population and their reliance on community care services. This section deals with advocacy that is funded and commissioned specifically for older people.

12 documents were identified which fall into this category, though one of these specifically states that it relates to advocacy services for both adult service users and older people.

The majority of these documents did not consult with users of advocacy services about their experiences of advocacy.


Two of these documents consisted of literature reviews. The first of these documents [21], which was produced on behalf of OPAAL UK in 2007 is not about user engagement.

Get Heard were asked to carry out a literature review of commissioning documents provided by the statutory sector when commissioning advocacy services for older people. The original proposal was that 30-40 such commissioning documents would be assessed and the following themes explored:

* Understanding of independent advocacy by commissioners* How good practice in advocacy provision is identified bycommissioners* What outcomes they are seeking for older people* Whether commissioning documents are aimed at organisations that can provide an effective service* Any relevant differences in approach/practice in commissioning* Implications of commissioning practice for meeting the needs ofolder people

A small sample of documents showed no obvious common approach to commissioning advocacy with older people.

This review reveals the huge impact commissioners can have upon the efficacy and sustainability of an advocacy service. Likewise, inadvertently, it demonstrates the importance of advocacy service providers being able to show that the value placed upon their services by service users as much as monitoring by commissioners, can be simply about “counting” and re-tendering (to the cheapest provider). Without pressure from service users concerning the quality and worth of a service, it can be left unprotected, especially if it is genuinely independent and (therefore) challenges the commissioner where necessary.

The second of these documents [52] is a scoping review of the research and evidence base relating to advocacy services and older people’s entry into care homes in England, commissioned by the DoH and produced by the Social Care Workforce Research Unit. Consisting of an extensive literature and online database search it synthesises materials recording advocacy provision for older people in residential care. The general conclusion it draws is that such provision is extremely patchy in the UK and internationally and that evidence recording service user experiences of advocacy is extremely limited. The area in which some evidence has been accumulated concerns the recently established role of the IMCA Service. Even then, there is insufficiently specific demographic data upon which to draw in order to obtain detailed conclusions about the experiences of older people in particular concerning this service.


The next two documents we looked at in relation to older people’s advocacy consisted of the results of an initial and follow-up survey of advocacy provision in Wales carried out by Age Concern Cymru [63 & 64].

The first survey’s main finding was that despite the value and need for advocacy being highlighted by The Joint Committee on Human Rights and The National Service Framework for Wales, advocacy services were struggling to meet the needs of older people, who, without such services, are more likely to be at risk of abuse, to be unaware of their rights and how to act on them, and are less likely to have their voices heard and their wishes respected.

The intention of this survey was to provide statistics about the geographical spread of advocacy service provision, the type of advocacy being provided, funding of services, the type of abuse issues being dealt with and what to do about it, training provision, and resources that would be helpful to the services.The second follow-up survey shows a pattern of diminishing service provision. It specifically sought to harness information about the level of knowledge of elder abuse.

Only a small number of the organisations surveyed felt that training on domestic abuse would be beneficial. Age Concern Cymru believe that this is reflected in the very small number of domestic abuse cases involving older people being reported to relevant authorities. It uncovered instances when the involvement of an advocate made a significant difference to the older victim of elder abuse. The first of these examples discussed an instance of domestic abuse when the recipient’s advocate was able to identify alternative accommodation for her: “The advocate was the only one who was listening to the person’s wishes. The lady was able to stand up to her husband because of the support she was receiving from the advocate. The advocate was also able to support her with access to information and specialist support.” [p.26].

The second example explains that within 3 months of coming into post and without any publicity regarding the project for which he worked, a local advocacy project officer received 3 referrals from older people seeking support to end the domestic abuse with which they were living. One of these involved a 76-year-old man with early stage dementia and Parkinson’s who had left his abusive wife. The inadequacy of appropriate services and housing was so serious that the individual concerned had to remain in residential care whilst the advocate tried to find him suitable accommodation. Concerns were expressed that if the advocate was unsuccessful in finding alternative accommodation, the elderly man may end up becoming institutionalised or returning to live with his abusive wife rather than staying in care.

Two service reviews of advocacy provision for Older People were selected for consideration in this literature review. The first 2003 Joseph Rowntree Foundation study [75] entailed a review of services for older people living in


Slough explicitly from a service user perspective, with service user groups of Older People. It was led by researchers from the University of Reading. It tends to reinforce many of the important messages found elsewhere in larger (similar) studies concerning the views of Older People with regards to their engagement with advocacy (and related) services. There appeared to be a lack of clarity regarding the difference between information provision and advice and advocacy. Distinctions between these were not generally helpful to older people who seemed to require a service which could encompass all 3: clear and relevant information; advice which helped apply the information to their specific circumstances and advocacy which assisted them to access the services they chose and needed.

Information provision and consultation were often described as participation in relation to service planning and delivery: "A key issue for the Slough Older People’s Forum was how its membership could become more representative of all Slough’s older people, and how older people could become more fully involved in decision-making. There was frustration at what could be seen as a ‘top down’ approach, with information-giving and hasty consultation offered instead of participation." [p.27].

The report concluded that there was little coordination and evaluation of services from the perspective of service users.

The second service review [70] examined advocacy provision in Newcastle upon Tyne. Although the review states that it includes advocacy provision for adults and older people in the city, all comments are general and no specific reference is made to older service users. Therefore, in order to avoid repetition, this review is discussed in the section of this report relating to mental health advocacy for adult service users.

Two brief articles were identified relating to Older People’s advocacy services. The first [39], a case study from Older People’s Citizen Advocacy, whilst interesting and useful in some training contexts, does not shed useful light onto the issue of service user engagement with advocacy.

The second article [40] is also brief but does provide an interesting and helpful insight into how a local group advocating for Older People in York engages successfully for those on whose behalf the service advocates: "[...] feedback from service users show[s] that they consider OCAY's input to have been successful even when their original outcome has not been achieved, simply because they feel that they have taken control of their own situation and have been empowered to make a decision or take action." [p.2].

Two reports were included in the documents discussed in this section of the literature review. The first of these [58] is primarily a report commissioned by Westminster Advocacy Service for Senior Residents itself to assess the extent to


which it provides value for money. It is therefore, first and foremost, designed to be a study which will generate income for WASSR. It concentrates therefore upon case studies handled, numbers of people seen, demographics of service users, outcomes of cases handled, number of volunteer advocates, etc. The analysis of the scheme is unsophisticated but it appears to adhere most closely to a Citizen Advocacy Model, whilst adding some additional support and advice services: "WASSR was intended to give a voice to, and empower, dependent and disadvantaged older people in Westminster so that “they may ask for and obtain social care and health services to which they are entitled." [p.10].

The tone of the report ‘others’ those in receipt of the advocacy services, for example describing them all as ‘vulnerable’. The starting point of this document appears to be that people in receipt of advocacy services are (by definition) passive, needy recipients: "The whole advocacy movement is based on the need for vulnerable members of society to have someone to speak up for them, to help them gain their rights." Their difficulties may be a result of cultural or language barriers, disability, frustration, inability to articulate, or reluctance to challenge, or perhaps a combination of several of these factors" [p.16], who, were they not supported by this service, would be a drain on social services and related provision: "WASSR acts as a safety net for workers in the statutory sector. “Statutory workers appreciate the existence of an organisation they can involve in cases where clients are complaining but there is no evidence to substantiate the complaint." [p.21].

By this means, the report sets out to justify expenditure on the WASSR as, on this basis, representing value for money by ensuring that the time of statutory services is not unnecessarily consumed by people whom the advocacy service can best support and advise. Under these circumstances, it is perhaps unsurprising that the report does not provide much insight as to the user engagement of this service with its customers. It does however contribute yet another example of the damage done to advocacy services by their precarious funding position. It is apparent from the methodology adopted for this study that no direct contact with, surveys with or interviews with anyone in receipt of advocacy services from WASSR, was deemed necessary. The second of these reports [38] is a document produced by the Older People’s Advocacy Alliance and explores the views of older people regarding the value and impact upon them of advocacy: "The motivation or need for advocacy was broadly related to protection from abuse; combating discrimination; obtaining and changing services; securing and exercising rights – as well as being involved in decision making and being heard." [p.14].

The precise function of advocacy which differentiates this type of intervention from other kinds of support such as befriending is discussed, as is the importance of outcomes secured by the involvement of an advocacy service: "[...] the process of advocacy was just as important as the outcome." [p.9].


The report also sets out to identify the extent to which a user network was felt to be a good idea by older people: "[...] service users’ active involvement is of great value in shaping and sharing in the future of advocacy." [p.13].

The penultimate item included in this section is a 2003 study and review [09] from Dementia North, which usefully documents the experiences of a range of advocacy services providing “specialist” dementia advocacy support. The principles and benefits for such services engaging directly with people who have a label of dementia are highlighted: "[...] researchers and practitioners are finding ways to listen to, and communicate with, people with dementia in order that their voices are heard in shaping their lives and the services that they receive. Work of this kind has demonstrated that when people with dementia are enabled to communicate, they have important things to say about how dementia affects them, about what they consider important about their present and future lives, including how their health and social care needs should be met." [p.5].

However, a flaw in this study is that people who have dementia were not themselves interviewed as part of the research. The justification given for this is that: "In practice, we did not have the time or the resources necessary to build up a trusting relationship to ensure that the person with dementia felt at ease to be interviewed." [p.12].

Perhaps unsurprisingly, a common conclusion arrived at by providers of such advocacy services is that self and peer advocacy are most successful but that these need to be supported by voluntary or sometimes paid professional advocates. They also conclude that people in the earlier stages of diagnosis are best placed to self advocate. This document emphasises that dementia advocacy is a very recently developed specialism within the overall advocacy field and that there is still more work and evidence gathering necessary before a more definitive set of principles or standards can be developed: "[...] changes in dementia care and more generally in user involvement in health and social care, are creating a favourable climate for substantial growth and development of dementia advocacy. We are now much more aware of the importance and the possibilities of people with dementia having a voice." [p.49].

Nonetheless, it does provide a useful summary of the position and helpfully draws some necessary distinctions between dementia and other forms of advocacy support.

Finally we perused a Joseph Rowntree Foundation research report [25] which provides useful distinctions and overlaps between and explorations of conflicts and implications connected to these various areas for Older People. Although user engagement is not primarily the focus of this report, it does contain some useful insights.


The involvement of Older People in the growth of advocacy projects challenges the myth of passivity relating to this group: “The growth of local advocacy projects by and for older people since the late 1980s, together with the founding of the Older People’s Advocacy Alliance (OPAAL) UK in the late 1990s, has opened up new opportunities for the definition and development of the older people’s movement and the advocacy movement alike (Dunning, 1998a; Older People’s Advocacy Alliance, 2002.)" [p.17]. However, the enduring confusion between information, advice and advocacy for both advocates and their partners is highlighted: "There is a real distinction between information and advice and then advocacy. I’m not here to give another service, I’m here to give a voice." [p.16]. The need for Older People themselves to be in the driving seat for future development of advocacy provision for their peers is unequivocally stated: "[...] these services should themselves be accessible and “[…]older people should have equal opportunities to be involved in managing, developing and delivering as well as using them." [p.9].

A further area that is discussed in which Older People could be supported to become involved is in filling the knowledge gap regarding advocacy provision for their peer group: "[...] advocacy with older people is relatively under-researched and little recognised. Advocacy has a hidden history of grass-roots struggles and successes that are largely recorded in ‘grey’ publications, such as pamphlets, newsletters and documents with limited readerships." [p.5]. The importance of independent advocacy is a thread running throughout this literature review and this section on Older People is no exception: "My fears are allayed when I know that you’re not answerable to the [service] providers or the family or whoever, but to the person and the agency which is independent." [p.31].

Service users are concerned about what will happen if the services to which they are entitled do not deliver and they do not have recourse to independent advocacy: "They [a voluntary organisation] provide information and advice and the day centre and they run home helps. But what if they get any of it wrong? Where do we go then?” [p.33].

The value that the involvement of Older People themselves can and could potentially bring to advocacy schemes has been documented in publications such as Better Government for Older People [2000a, 2000b, 2000c, the National Audit Office [2003] and other publications from the Audit Commission 2004a, 2004b].

Additionally, there are repeated statements throughout this document that Older People themselves should be involved in the delivery and management of


advocacy: "A diversity of older people should be engaged in the work of information, advice and advocacy services intended for older people. This involvement may take place at all levels of the management and running of the service, acting as management committee members, developing standards and quality frameworks, building alliances, monitoring and evaluation, as well as providing information, advice and advocacy on a peer basis." [p.69].

The consequences of not doing so perpetuating dependency and further disempowerment are spelt out in contrast to the benefits of doing so: "[...] involvement could be an outcome of, as well as a process within, information, advice and advocacy.” [p.37].

However there were concerns that the quality of advocacy should be of a high standard regardless of whether it is delivered by peers or professionals and advocacy partners must be assured that their personal information, such as financial or health matters, should remain confidential in peer and self advocacy schemes, particularly in small communities.

Older People must be central to the formulation of policies, including the development of a National Service Framework, on advocacy, to resist the risk of standards being established which tick the boxes of funders and service providers rather than meeting the needs of service users: "[...] it is essential that older people are engaged in work on the creation, implementation and monitoring of standards for information, advice and advocacy services intended for older people" [p.63]. Furthermore, "Government, statutory and voluntary organisations should move from consultation to the engagement of older people in the development of information, advice and advocacy services at a policy level." [p.67].


SECTION 5 – MENTAL HEALTH SYSTEM USERS AND SURVIVORS

11 documents were chosen for consideration in this literature review which explore a range of issues for users and survivors of the mental health system engaging with advocacy: it was felt that this selection of documents provides both a representative and proportionate cross-section of material in this area.

The first document considered was ‘A Clear Voice, A Clear Vision – The Advocacy Reader’ published by the UK Advocacy Network (UKAN) in 2001 [72]. This report, published by a network inspired and launched by user-led groups, in the main reflects upon and seeks to anticipate likely outcomes of the introduction of (then) forthcoming statutory rights to advocacy services for those detained under mental health legislation. The report points out that this is one of the clearest areas where independent advocacy can make an important contribution. The report considers the extent to which an advocate’s contribution may become devalued and treated as pointless, particularly where an individual has written an advance agreement about their care and treatment (possibly without the involvement of an advocate) at a time when they had the capacity to do so. The remainder of the publication focuses upon identifying the existing legal basis to support an advocacy infrastructure.

In 2002, the DoH commissioned and published research undertaken by the Centre for Applied Social Studies at the University of Durham entitled ‘Independent Specialist Advocacy in England and Wales: Recommendations for Good Practice’ [74]. This study and report explored the possible structure and functions of the independent mental health advocacy services anticipated in the ‘Reforming the Mental Health Act’ White Paper published in 2001. It sets out what these specialist advocacy services might look like. It includes a proposed definition, a model of service and core standards for the commissioning, management, staffing, practice, monitoring and reviewing of these services.

A programme of visits to a range of advocacy services throughoutEngland and Wales was undertaken as well as a study visit to the Netherlands where patients of psychiatric hospitals have had a legal right to access advocates since 1994. Researchers also attended a number of advocacy network meetings and conferences and a Delphi study was carried out to identify the essential characteristics of mental health advocacy. The study was advised throughout, by an advisory group with representation from what are described as “major stakeholders in mental health advocacy”.

The report was written “with” Tricia Webb, a member of the Advisory Group and user of services, who wrote the journey through mental health services in Section 2. This section contained stories that were written to illustrate examples of how the independent advocacy service might work in circumstances where someone who is experiencing mental distress and is subject to the powers of the Mental Health Act might want such support. The report does not consider the


experiences of a range of service users, nor explain whether the stories contained in Section 2 are based upon such experiences. This study is therefore of limited use when exploring user engagement with mental health advocacy services.

In 2002, The Joseph Rowntree Foundation published ‘Mental health advocacy for black and minority ethnic users and carers’ [26]. This report exposes weaknesses in much mainstream advocacy provision. It identifies very clear and specific ways in which Black and Minority Ethnic service users want to be involved in advocacy and in defining it. This research found that:

“• No information on advocacy within mainstream services was translated into formats appropriate for service users and carers from minority communities.• Only one independent Black [mental health system] survivor group was identified.• There was a lack of bilingual advocates within mainstream advocacy projects” [p2].

With regards to user engagement, the report’s authors conclude that: "[...] advocacy should go beyond individual empowerment and must influence ‘the system.’" [p.3].

Importantly, service users, carers and advocates identified that advocacy must include the fundamental aspects of a shared cultural identity. The researchers said that “they felt that advocacy services and notions of empowerment could not successfully empower minority groups without integrating culture, faith, anti-racism, spirituality and gender." [p.3].

In 2004, Rick Henderson wrote ‘Empowerment through advocacy: mental health advocacy in focus’ [46]. This article touches upon the importance and impact of genuine user engagement, whatever the model of advocacy being adopted. Whilst focussing particularly upon mental health advocacy, many of the conclusions drawn regarding the significance of user engagement are clearly transferable beyond this defined area of advocacy activity. Although this article predates the inception of IMCAs and IMHAs, it again anticipates the formalisation of advocacy under (then) forthcoming mental health legislation and the messages contained here (regarding service user engagement) have a resonance which is as applicable now as when they were written. Henderson lays emphasis upon the need for advocates to adopt a partisan approach: it is, he makes clear, important to counterweight the often dismissive approaches adopted by mental health services. Henderson writes: "In an environment in which users’ views are often ignored or dismissed, the act of accepting service users’ accounts of what is happening to them is empowering in itself, even if the advocacy process achieves no tangible outcomes." [p.13].


Directly with regards to engagement, Henderson acknowledges the need for and impact of ‘collective advocacy’. He states: "[...] in the context of collective advocacy, a more political approach may be necessary, for example when challenging new legislation or opposing changes to local service provision. In this way, the collective voices of service users can be a powerful way of raising the profile of particular issues." [p.21].

We considered two Mind publications from 2006. These were the ‘Mind guide to advocacy’ [31] and ‘With us in mind: Service user recommendations for advocacy standards in England’ [32].

The guide provides useful, straightforward information about what advocacy is, the type of advocacy that an individual may need, when an advocate may be needed, how to find a suitable advocate, how to work with an advocate and organisations where advocacy services may be accessed. The Guide does not discuss service user’ engagement with advocacy.

The report is, on the other hand, a useful and comprehensive recent extensive piece of research with recommendations, based upon the views of mental health service users, about how advocacy should engage with and indeed be underpinned by the priorities of “advocacy partners” (or service users). It contains many proposals for how citizen advocacy in particular can best engage with service users, which are transferable from the mental health-specific context in which they are cited. The report provides models and proposals for effective service user engagement with advocacy services and clear explanations of how such engagement would strengthen their provision, delivery and sustainability. Mind comments in this report that: "[...] initial engagement can never be an exact science. The nature of mental distress and of individual experience dictates that there can never be one way to engage." [p.16]. Mind’s research identified that deviation from the three basic tenets of advocacy – user focus, independence and confidentiality – will eliminate the element of trust and the advocacy service will fail. Service users were particularly concerned that this might occur with larger, commercially focussed providers or those wholly funded by - and based within – Primary Care Trusts.

The report also highlights that much of the successful advocacy that has developed in England (and across the United Kingdom) in recent years began with one or more survivors of mental health services deciding to assist others with a direct personal experience of the often confusing and disempowering mental health system. Reflecting the conclusions also drawn by Shaping Our Lives [59] considered in Section 3 of this review, the authors found that there are still too many examples of tokenist approaches where service users are invited to attend meetings, but then their views or needs are ignored.

The report in particular focuses upon the commissioning of advocacy services as a key stage at which genuine service user engagement is necessary in order to


influence strategically the nature of advocacy provision available in a given area. Mind recommends that: "[the commissioner] must identify all bodies that are providing advocacy or stimulating service user involvement or social inclusion throughout the catchment area, and provide support and nurture them to engage and build capacity more effectively." [p.31].

Genuine service user engagement with commissioning can best be achieved, Mind argues, by: “[…] the creation of a committee dominated by service users who advise the commissioner on an ongoing basis to ensure that service user views are represented and promoted at all stages of planning and delivery." [p.34-5]. Importantly, the report recognises that: “there needs to be a well-funded independent service user organisation that is able to engage effectively with agencies involved in the commissioning and delivery of advocacy, and which will campaign for improved user involvement at all levels." [p.39].

From 2007 we looked at one further example of information provided by Mind: published by Action for Advocacy ‘Peer advocacy’ [30] it transpired, constituted two interesting case studies. Whilst useful as training tools to promote user engagement, these did not shed any significant light on the process of user engagement itself.

In the same year, SCIE published the report ‘Developing mental health advocacy with African and Caribbean men’ [47].

This provides a helpful, in depth and comprehensive analysis of a range of mental health advocacy services utilised by Black men. It identifies some characteristics of effective advocacy services which most effectively meet their needs. The conclusions drawn by the researchers emphasise both the need for effective services which engage with service users but they also highlight an important distinction between (standard) independent advocacy (approaches) and “community advocacy” as a specific, valued characteristic of more collective and holistic advocacy services, most typically based in the African and Caribbean communities.

The research conducted with a variety of advocacy and community organisations concluded that collective community advocacy powerfully strengthens the development of skills and knowledge, so that people begin to develop self-reliance, feeling more valued and respected.

The authors state: “a community development approach can create culturally appropriate structures that will enable communities to identify and assume control of the process by becoming involved in the development of new services.” [p.11].

Unsurprisingly, this research confirmed that: “there is a substantial body of evidence pointing to a negative relationship between mental health services and


African and Caribbean men, who are under-represented as users of enabling services and over-represented in the population of patients who are admitted to, compulsorily detained in, and treated by mental health services." [p.xvii]

Perhaps partially as a result of this over-representation within the mental health system and as a consequence of alienation from many ‘mainstream’ services, including some advocacy providers, SCIE found that: “[...] most BME service users felt most empowered when they had an advocate reflecting their culture, gender and ethnicity." [p.58].

SCIE found that ‘mainstream’ mental health advocacy services often talk in terms of the need to ensure cultural sensitivity but in practice rarely appeared to have anything other than a superficial understanding of what this means in practice.

Finally, based on the conclusions drawn from research undertaken with a broad range of advocacy providers, SCIE identified some common features of good practice in the provision of advocacy with African and Caribbean men. These included:

• “advocacy that addresses the double discrimination of racism and mental illness;[...]• the ability to respond to the linguistic and cultural needs of African and Caribbean men, underpinned by an approach that emphasises promotion of health, reintegration of the self, spirituality, self-knowledge and connection to the community;[...]• a proactive approach to personal advocacy through community-based action and engagement;”• “balancing accessibility and informality with professionalism to ensure that advocacy services are delivered to high standards;[...]• partnership working and facilitated networking across organisations to encourage cross-referrals, exchange of information, best practice and mutual understanding;• adequate long-term core funding" [p.xviii].

The importance of a collective, community-based approach towards advocacy, which maximised peer and self advocacy, was recognised. The report states: "there was consensus that advocacy could enable African and Caribbean men to get heard and have their needs met more appropriately by having a greater say and greater control, particularly in the relationship with mental health services, and therefore more capacity to determine what treatment and support they received." [p.xxi].

The report found that there appears to be an absence of research into advocacy models based on empowerment, although many of the project reports reviewed


identified this as an aspiration. Likewise the authors discovered that there is no clear information on different approaches that can or should be used for different genders or age groups. The authors of the report conclude that advocacy for Black and Minority Ethnic men needs to have a broader definition and a conceptual framework has been developed by them which locates advocacy not only as a strategy for protection and empowerment but also for community engagement.

In the same year, Action for Advocacy published a brief report about the activities of a Chinese self advocacy organisation. This report entitled ‘User self advocacy project’ [06] enthusiastically expounds and publicises the importance and benefits of advocacy being user-led. The report states: "We want the project to be truly user led but people need great encouragement. […] user led is always important so there is a culture at the project which is always to involve service users in project planning and consult their feedback." [p.1]. In common again with the findings of the research conducted by Shaping Our Lives (59) and the views expressed by a range of advocacy projects outside the Chinese community and beyond the field of mental health, the report marks some frustration with tokanistic, rubber stamping or tick-box consultation exercises. The authors discuss a “[…] sense that people have been invited to join many consultations and meetings in the past, but the lack of visible impact and changes can make them question the effectiveness of their involvement.” [p.1]. The report concludes however with a determined commitment (despite such obstacles placed in the way of poorly resourced self-organised community groups) to “[…] make a difference and ensure Chinese voices are heard, change is achieved and ultimately Chinese people receive equal treatment to the rest of society." [p.1].

Finally in 2007, we considered a pamphlet entitled ‘Making decisions. The Independent mental capacity advocate (IMCA) service’ [22] published by various government departments and written by “Speaking Up”. It reviews and explains the role of the IMCA. It does not review any research findings concerning user engagement with advocacy services, but simply explores how (in particular) non-instructed advocacy works in practice.

In 2009, a report of mental health advocacy services in Newcastle-Upon-Tyne was published entitled ‘Review of advocacy services’ [70]. In common with elsewhere in the UK, advocacy services in the City appear to have developed from a series of separate initiatives rather than as part of a coherent strategy. The majority of advocacy across the city was provided by voluntary organisations and funded on an ad hoc basis. Whilst user engagement is not an explicit theme in this report, a number of interesting perspectives emerged during the focus groups and interviews held with service users and the interviews with other key stakeholders. It is apparent that the lines along which those advocacy services reviewed seemed to run might be said most closely to adhere to a professional or citizen advocacy model.


Some revealing comments are made by advocacy service users perhaps partially as a result of this approach having been adopted. Most strikingly, at the service user focus group held to gather evidence for this research, one person commented, in relation to whether or not service users should be involved in the design, implementation and evaluation of the advocacy infrastructure: “[…] the service users and their families are usually far too subjective and passionate about their specific issues. I think it would be unlikely if they could becalculated or impartial enough to make a meaningful contribution.” [p. 17]

A dichotomy of opinion did emerge in some areas, including, for example, the provision of emergency, out-of-hours cover. Service users felt that it was generally inadequate whereas (across the board) advocacy providers believed that sufficient arrangements were in place to meet such needs and demands from service users.

When questioned about improvements to existing mental health advocacy services available in Newcastle, responses were uncertain, as all service user respondents felt that they knew nothing at all about services for anyone butthemselves. Two group members did suggest that in relation to the services they had been provided with, assistance with legal issues was somewhat lacking.

When asked about their perceptions and experiences of mental health advocacy services in the past, as opposed to their current availability suggestions were again limited to personal anecdotal information, indicating a lack of knowledge regarding the overall structure of advocacy services in the city.

A distant or somewhat hands-off feeling indicating a remoteness and disengagement with mental health advocacy services in the city seems to be the prevailing perspective amongst the service users who were consulted as part of this review.


SECTION 6 – CHILDREN AND YOUNG PEOPLE

This section of the literature review includes reference to 10 documents. The provision of advocacy for children and young people is patchy and inadequate. A study cited in this literature review [54] based on a survey of 300 advocacy schemes in 2005 found that only 35 had specific resources to work with children. This is despite a huge unmet need, particularly during the time of transition as the services and support young people eligible for such provision require and receive, transfers from children to adult services. According to Watson et al 2000 [Life as a Disabled Child: a qualitative study of young people’s experiences and perspectives] cited in Priestley [45]: "Disabled children, even those with the most severe impairments, are able to communicate their feelings about their lives and the treatment which they receive.” [p.3]. Priestley goes on to maintain that: "[...] there is considerable evidence that the wishes and feelings of such children are frequently overlooked in day-to-day service provision, and in planning support for children and their families." [p.3].

There appear to be huge gaps in terms of consulting with children and young people for whom advocacy is provided. Consequently, their voices often remain silent and unheeded.

A policy document from the DoH [10] containing national standards for the provision of children’s advocacy services, profiles heavily the need to ensure that children and young people are involved with and, so far as is possible, in control of the advocacy they receive as individuals and of the advocacy services themselves: "The child or young person leads the advocacy process. The advocate acts only upon his/her express permission and instructions, even when these are not the advocate’s view of the child or young person’s best interests." [p.3]. This provides a useful framework or model for services seeking meaningfully to engage with users of advocacy services.

These standards have a quasi-legal status forming part of Central Government guidance to local authorities and in particular the commissioners of children’s advocacy services: "The standards are issued under Section 7(1) of the Local Authority Social Services Act 1970, which requires local authorities with social services functions to act under the general guidance of the Secretary of State. The standards should be complied with by councils when commissioning independent advocacy for looked after children" [p.2].

Users of such services are (predominantly but not exclusively) children in care, children in custody and disabled children. The document outlines a number of roles that children and young people could play in terms of involvement in the provision of advocacy services:

“• Recruitment of staff, particularly those working directly with children and young people;


• Staff induction, training and appraisal;• Joining management committees;• Acting as advisors to the advocacy service;• Production and promotion of publicity and information materials;• Joining consultation groups on policy, ethics and practice development;• Evaluating and monitoring the service" [p.12].

There is recognition that services should use consultation with and the involvement of young people at all levels of decision-making to ensure that they become more sensitive to the needs of young people. Guidance is also issued as to how the standards recommended within the document should be met. For example, if there is not agreement between the child or young person’s wishes and those of the parents/carers, it is recommended that advocates should give precedence to the requests of the child: "Action notes and records of meetings with children and young people (should) demonstrate how their active participation has been promoted." [p.6].

Significantly, the choice of how the young person interacts with the advocate and the independence of the advocate is paramount: “Some may wish to communicate for themselves; some may want the advocate to speak for them; whilst others may wish to represent themselves jointly with the advocate. The advocate (should take) great care not to put words in the child or young person’s mouth, but to represent his/her views without resorting to jargon." [p.3].

The significant gaps in the provision of advocacy for specific groups of young people are recognised: "Proactive steps (should be) taken to make contact with and engage disabled children and children and young children from black and ethnic minority communities." [p.6].

A briefing paper [69] from the Institute of Education in 2006, authored by Oliver, Knight & Candappa, and prepared for the DoH and DfES, offers a summary of the key findings of ‘Advocacy for looked after children and children in need: achievements and challenges’, - described as “the first national study of children’s advocacy in England”. The overall aims of the study were to investigate the role of advocacy in facilitating the participation of looked after children, and children in need, in decision making in the context of attitudes and beliefs about their capacities at different ages, and according to their mental health status, and nature of impairment/disability. It compared ten advocacy services in order to:

* describe and compare the process and impact of advocacy from the perspectives of looked after children, advocates, health and social care professionals, and parents and carers;* investigate the impact of advocacy at the level of the child and at the service level; and


* identify policy and practice recommendations in relation to advocacy for children and young people.

Semi-structured interviews included 48 children and young people of varying ages, impairments and ethnic origin, advocates, service providers and parents/carers. Data from a telephone survey of advocacy services and the subsequent in-depth investigation of ten selected advocacy services, were analysed to illuminate key themes concerning the principles and practices of advocacy with children and young people.

Data obtained from the study found that young people contacting advocacy services often had multiple problems that varied in complexity. The most common reason reported by young people for contacting an advocate concerned placement issues. The survey found that children and young people, and parents or carers, were more likely than other stakeholders to say that they were initially confused about the meaning of advocacy, but that they developed an understanding as a result of working with an advocate. Most of the young people involved in the study understood that an advocate should be on the side of the young person and represent them so that service providers would take note of their wishes: “Advocacy is a person who helps children who are in care. They make sure the social worker is listening to them, that they’re getting what they are entitled to, making sure they are not being abused in care, and helping if they have any complaints’ [Ismail, 19 years)” [p.2].

Young people placed a high value on the confidentiality and independence of advocacy services: “A social worker – they can listen and they can get things wrong, but an advocate, they take your views and do what you say, and listen to you…She (the social worker) wouldn’t believe me. She wouldn’t listen to me.’ (Susan, 11 years)” [p.3].

There was agreement amongst all informants that involving friends and relatives as advocates for young people was neither advisable nor appropriate, because impartiality, knowledge and assertiveness were felt to be key attributes for advocates: “Children and young people in particular were almost unanimous in their rejection of the notion that friends or family members could make effective advocates.” [p.3].Young people in care revealed that they often did not disclose the fact that they were in care to friends because of the associated stigma. They stressed the need for confidentiality amongst advocacy providers: “I wouldn’t want my friends knowing about it…..and an advocate has been trained. If someone was in your family as your advocate, they might not do it properly. Like it’s different. They wouldn’t be fair.” [Peter, 12 years] [p.4]. The standard of confidentiality that could be offered and understood by young disabled people was a contentious issue, particularly where their sexual behaviour or identity was at issue: “At first, it’s like you don’t trust them because you think they’re part of the system. Then you realise they’re not part of the system at all. It’s all


confidential and you can say what you want and he won’t be shocked or offended” [Mark, 18 years] [p.7].

The need for flexibility was acknowledged and felt to be especially relevant if the child being advocated for was particularly young, hyperactive or lacking in confidence. Young people stated that the extent to which advocacy was ‘child-led’ varied and was dependent upon the approach of the advocate or the situation of the young person being represented by the advocate. A small number of examples given demonstrated that advocates could act inappropriately and against the wishes of young people: “I felt the advocate was not listening to the solutions I wanted to put in place (ie. supervised contact with her sister). Nobody was listening to me” [Kath, 15 years] [p.7].

Most children and young people interviewed for the study were grateful that their advocates had assisted them to have their views heard and helped negotiate agreements when they had disagreements with their parents. A majority of young people reported a high level of satisfaction with their experiences of advocacy. On a scale of 1-10, 86% of those who responded (65% of the whole sample) gave advocacy between 8-10 points. Most young people who were able to identify important emotional and practical outcomes of advocacy, e.g. feeling more confident and less stressed, felt that their views had been taken more seriously. 38% of young people believed that their requests had been fully met. Often this resulted in important and far-reaching outcomes being achieved, for example, retaining custody of a baby, achieving contact with family and friends, tracing siblings, remaining in `a placement of their choice, obtaining access to housing, counselling and welfare benefits.

Two reviews of advocacy services for young people were identified during the search for relevant documentation pertaining to this literature review. The first [34] provides a useful insight into the power, influence, barriers and limitations experienced by self and peer advocacy groups run by and for young people in various contexts. Examples are given of the impact and value attributed to these models of and approaches to advocacy by the young people involved and the services they sought to influence. The ones which achieved the greatest degree of autonomy and impact (which also had the most precarious funding) were both self advocacy projects, neither of which persisted, despite their positive impact, beyond their initial 3-year funding periods. The struggle that advocacy services for young people experience in effectively representing the views of their clients is unequivocally described: "[...] one of the main factors preventing advocacy from working is resistance from adult-led services and organisations, which, without support from other adults, makes it very difficult for young people to engage in forums that would enable their voices to be heard." [p.2]. The frustration with the reluctance of professionals to engage with and take on board the views of young people was shared by advocates: "The final theme identified by various stakeholders in the projects revolved around the difficulty of getting ‘adults’ to listen to what young people had to say." [p.35]. Small groups that did


not have a high profile were less successful in overcoming barriers constructed by large, bureaucratic bodies: "It was also clear that without the support of a respected or well-known organisation, it would have been difficult for young people to gain access to people in authority." [p.35]. The seeming inability of many professionals to relate to service users in a language that is not riddled with jargon and academic-speak paints a depressing picture for advocacy services seeking to engage with statutory providers and other big bureaucracies to relay messages about what needs to change for young people and children. Discussing the images used in an exhibition put together by self-advocates to explain the role and purpose of their advocacy scheme, the report quotes an advocate as stating: "One of the images was a squashed cardboard box with all sorts of footprints on it and a person, a collage of an abstract person basically walked all over it and it said ‘Care in the Community’. It was really striking and we had the agencies, professionals coming to me and saying I think it is really nice but what does it mean? Where is the report? Where is it in black and white? Where is the consultation?" [p.36]. However, the changes that advocacy services can achieve in the provision of services should not be underestimated: "After the group had engaged with social services, a number of changes were made to the standards of care provided by the local authority, which were attributed to the YRRP’s activities. For example, it was reported by the young-person coordinator that the quality of the food served in hostels improved and the rules governing visiting hours in residential homes were relaxed." [p.13]. The review found that all of the projects included were successful “inasmuch as they demonstrated that they had achieved important milestones on the road to effecting changes in the services and/or working practices of the institutions that they set out to influence." [p.37].

The benefits of young people’s involvement in advocacy schemes is recorded but these are often described by service providers rather than the young people themselves: "As a result of their involvement in the project, the training officer reported that some young people had made significant changes to their lives. One of them has gone on to work for the NSPCC and two have gone to work for local authorities." [p.21]. The need for advocacy schemes to work with seldom heard groups, such as asylum seekers is often unrecognised and ignored. Where they do exist they are an under-resourced but invaluable source of support: "I think the project has been very successful in giving young refugees a voice, and asylum seekers a voice. It has been very successful in getting them involved, building their confidence, and working, you know, on their enthusiasm, and supporting them in doing what they want to do." [p.13].

Occasionally the reader gains an insight into the actual experience of service users themselves which, of course, is the focus of this literature review: "This makes me happy and helping other people makes me more happy than taking


pills every day. So I’d sooner be doing this and different forms of making yourself feel better instead of throwing things down your throat all the time." [p.27].

The benefits for young people of their involvement in peer advocacy have been well recorded elsewhere, including by the Greater Manchester Coalition of Disabled People’s Young Person’s Project, but the problem of recruiting young people to such schemes and the need to have clear rules and boundaries within such projects is highlighted in this review: "[...] for young people to feel safe, it was necessary to lay down some clear rules and boundaries in order to govern interaction between young people. A good example of this was the Youth Crisis Project, where the group developed a confidentiality policy and drew up a code of conduct that meant that the group were required to listen to the viewpoints of each of its members with equal respect." [p.32].

An evaluation [56] of an advocacy service which works almost exclusively with young people in care or in the criminal justice system was identified during our literature search. The extent to which this service is able meaningfully to engage in an ongoing sense with its users is severely limited. This emerges as a key (perhaps inadvertent) finding from the research: "Although initially every effort was made to sample young people who had used the service to ensure that there was a cross section of experiences by age, gender, ethnicity, location and the type of issue for which they had required an advocate, in practice this was not possible and selection of participants was far more opportunistic than originally planned." [.p9]. It appears that this service provides advocacy through paid (professional) advocates and that this support is usually restricted to a specific funded period of time. Whilst a number of technical problems arose during the course of this longitudinal study, it remains apparent that engagement with this particular big advocacy service provider on an ongoing basis does not really exist for young people in care or in the criminal justice system.

A survey of advocacy schemes across the country formed the basis of the next document reviewed [54]. An extremely small number of schemes surveyed had received specific resources to work with young people: "Advocacy for young people under 18 years old is still a big unmet need, particularly for the time of transition as young people move on from school to adult life. Community based independent advocacy projects have traditionally catered for adults only." [p.3]. The study demonstrates in many different ways the positive outcomes gained by young learning disabled people with whom advocacy schemes and advocates (peer, citizen or professional) engage: "It’s also true that lots of young people are used to others making all their decisions for them and haven’t had much practice at making choices. An advocate can help build the young person’s confidence in creating opportunities for them to practice having a say. It is hard to make choices if you don’t have practice in saying what you want and do not have information or experience of the choices that are being offered." [.12].


One clear message to emerge from this research is the obvious benefit to be derived from ensuring that advocacy schemes are inclusive rather than segregated. Advocacy schemes for young people which set out to meet the needs of and support young people with learning difficulties are clearly more effective (according to this research) than are segregated schemes. Similarly, schemes which also include adults mitigate against the perpetual child stereotype often otherwise promulgated towards adults (including young adults) with learning difficulties: "[...] it is not uncommon for young people to complain that they are not being treated seriously and still being seen as a child even though they are in their late teens. One advocacy project at a network meeting said they felt that they were able to counter this well as they were based in an adult advocacy scheme and so always treated the young people as emerging adults, not as children." [p.11]. The absolute need to acknowledge the identity of young people as distinct from their parents is often a difficult issue for service providers and an area where they often fail the young person because they are not knowledgeable and clear about the rights and needs of young people. They may also lack the confidence needed assertively to represent the views of the young person/people involved: "Unfortunately there are still examples of parents exerting too strong an influence over their sons and daughters, for selfish reasons." [p.19]. Some projects are unambiguous about their accountability: "[...] there needs to be a clear understanding that the advocate is there for the young person, not for the family as a whole." [p.20]. The views of adults and young people within families frequently differ, and the involvement of an advocate can contribute to the identification of a solution which may otherwise not become apparent: “[...] there are occasions when the young person’s views conflict with their parents and they may not feel confident enough to go against what their parents say or they do not want to upset their parents. At this point it may well be the volunteer advocate that the young person has developed a good trusting relationship with, who can help them to talk about what they feel and help them speak up for themselves." [p.19].

Parents [along with professionals] often claim that they can effectively advocate on behalf of young people, but accounts within this document counter the view that this is always working effectively for the young person concerned: "I talk differently to my advocate (Jane) than I do to my Mum. If I’ve got very difficult questions I’ll go to Jane. Sometimes I can’t tell my Mum, I’m really shy about telling some things to my Mum. If it’s personal I talk to Jane." [p.12]. However, the need for sensitivity and understanding on the part of the advocate when working with the families of young people is recognised: "It is important [...] to try and build up a constructive dialogue with the parents so that they understand and appreciate what the advocate is there to do." [p.19], as is the difficult position faced by parents: “[...] parents have many pressures on them and cannot always be objective about what their son or daughter wants." [p.19].

The involvement of young people as advocates for their peers is discussed in detail in this report and their empathy and wish to act on behalf of other young


people described: "[...] young people are good at sensing a feeling of injustice and can sympathise well, often with righteous indignation!" [p.17]. The age and inexperience of peer advocates is not always cited as the problem: "[...] we have found that young people are capable. They are passionate about people’s rights. The challenge is for people to start listening." [p.18]. The resistance and inflexibility of professionals is identified as a barrier: "The introduction of young advocates into these scenarios can be challenging for professionals - it can be hard for them to view a young non-professional as capable of being an advocate. The philosophy of recruiting young non-professional advocates can be very empowering for the young disabled person, but does go against our society’s culture of professionalising and accrediting." [p.18]. However, the resistance and problems that such young advocates may encounter is also acknowledged: "If you are looking for young volunteers, then the recruitment publicity has to look different and has to be targeted at a new section of the community." [p.17].

A useful synthesis of research into the experiences of parents as advocates for other parents is provided in the next document we looked at [56]. The context for advocacy in this context is usually (but not always) where a parent with similar experiences to another parent helps them by supporting them through the process of dealing with a number of statutory agencies. This is typically either in terms of getting the needs of a disabled child adequately met or supporting a parent whose child is in trouble with the criminal justice system. The value of user engagement identified in this research, which included focus group (primarily) research as well as a literature review in the area, was said to be the empathy, independence, knowledge and co-ordinating support available from someone who sees things from the point of view of the parents in need of advocacy support. A clear message to emerge from this work was the importance of the stance of the advocate, i.e. being an informed peer who is 100% behind the parent needing the advocacy.

The next research report [45] highlights the importance of advocacy services to children with communication impairments, of which 70% of those identified during this study, did not use a communication aid. Unfortunately, Mark Priestly (the report’s author) did not engage directly with disabled children, but with their parents when he conducted his research. Nonetheless, a number of interesting findings emerged about children with communication impairments, about whom he reports: "[...] there is considerable evidence that the wishes and feelings of such children are frequently overlooked in day-to-day service provision, and in planning support for children and their families" [p.3], Priestley argues that such children can make very effective use of advocacy services: "Disabled children, even those with the most severe impairments, are able to communicate their feelings about their lives and the treatment which they receive" (Watson et al. 2000) [p3]. Advocacy for these children and young people appears to be one of the greatest areas of unmet need at the present time: "[...] the exposure of children to intervention from a variety of different people, for a variety of different


reasons, in a variety of settings, compounds the sort of communication barriers that those children face in asserting their choices and rights." [p.16].

The likely impact of the (typical) absence of advocacy services upon looked after children with communication impairments in particular is stressed in this document: "A lot of people think that all nurses and social workers are naturally kind and caring people but…sadly…there are some people out there who don’t particularly care and are in the job for the wrong reasons... which is why I think advocacy is such an important thing for children like [my daughter], who people from the outside would say doesn’t communicate at all, because she doesn’t speak." [p.18].

Although Priestley’s report focuses very specifically upon the demands for such a service in the Leeds local authority area, many of its findings are evidently transferable to contexts beyond the City of Leeds: "[...] there was some considerable support from parents for a model of advocacy based on the rights of the child (rather than a model based on existing family support services such as social work or the key worker scheme)." [p.19]. His report calls for more research to fill the knowledge gap in this area concerning disabled children: “to explore their experiences and views" [p.27].

A (comparative) study from Ontario, Canada [44] reveals a definition of ‘advocacy’ which is culturally distinct from that which is used in the UK and in some other countries such as Australia, parts of the US and parts of Europe. In this article the term ‘advocacy’ is applied to the activity of providing information and advice. It explores the experiences of medical residents who set up a ‘child advocacy’ project to support parents and their children attending a school in a deprived area. Combined with the information sharing undertaken by these ‘health advocates’, was the donation of clothing and the provision of nutritious food (as incentives for parents and children to join in the exercise): "[...] by developing and conducting workshops, (medical) residents had the opportunity to develop knowledge about community and societal factors that influence child health, to develop skills to communicate and collaborate with families and school leaders, and to understand their role as an advocate for children in the child’s setting." [p.570]. The residents were given time off to undertake this activity. Examples demonstrate the impact of these advocates upon those with whom they engaged and the (overwhelming) positive response they achieved for the information giving and linked activities: "Residents also learned about determinants of health, such as income, education, child care and employment, physical environment and health services, through the health issues identified in the focus groups." [p.570]. This whole project it seems was set up as a research experiment and learning opportunity for medical residents. Whilst it had some undoubted positive impacts, the motivation for its creation and its possible consequent lack of sustainability, is perhaps salutary.


It is not possible to derive much further useful comparative data concerning user engagement with advocacy in light of the divergent definition of the term ‘advocacy’ used in this (Canadian) context.

The report ‘When will we be heard’ [53] produced by the Children’s Society in 2007 concludes an investigation in to the levels and types of advocacy for disabled children in the UK. It should be noted that the Children’s Society is one of the key (largest) providers of advocacy for children. This, similar in some ways to the Scope and MENCAP publications referred to elsewhere in this literature review, appears primarily to be a report containing findings which evidence the need for extending the legal rights to advocacy of disabled children (with the Children’s Society being one of the best placed organisations to deliver such advocacy services): "Despite the emphasis of legislation, policy and practice guidance, there is evidence to suggest that disabled children and young people are frequently excluded from any meaningful involvement in decision making about their lives (Morris, 1998b; Morris, 1999)" [p.8].

As a service provider, the potential for conflicts of interest to arise is inadequately explored as is the issue of user engagement with advocacy. This report is arguably less insightful than others (commented upon previously here such as the Priestley et al report). In any event, the report does not explore disabled children’s experiences of advocacy nor does it deal with the different types of advocacy available to disabled children, except to lament the lack of support for ‘non-instructed advocacy’ for those who have experienced barriers to communication. A number of barriers to disabled children accessing advocacy provision also emerged as a result of the survey conducted for this research. "Most children have little or no access to advocacy, but especially those with learning or literacy difficulties, who can’t write or use the phone, and have little or no speech." [p.10]. Advocacy schemes for adults find that publicising their services to those who are most in need of their support is a perpetual problem. Poverty, poor health, the lack of adequate community care packages and environmental barriers such as inaccessible public transport contribute to the isolation of many service users. Consequently, they do not find out about advocacy schemes. In the case of young people there are additional issues including the fact that many may never be in situations where they are not supervised or supported by adults, many of whom will be providing services: "[Advocacy providers have] limited or restricted access to children and young people to raise their awareness about their rights and about advocacy services." [p.42].

The survey was conducted with service providers, so an opportunity to give voice to the views of children and young people was lost. Consequently, information that could have been collated about how accessible the schemes are to young people was not gathered: "[There is] a lack of awareness among professionals


that disabled children and young people can and have the right to express their view." [p.42]. . A growing body of research suggests that the “systems of care” approach to children’s mental health can be effective in improving children’s behaviour and reducing stress on their families. Little systematic research has been done with parent advocates directly regarding their perception of how it is that their presence impacts upon the lives of families. A qualitative study from 2009 [05], looks at parent advocates of children with mental health problems in one of the largest wraparound training and service delivery initiatives – Tapestry - in Ohio, USA. This initiative works with parent advocates and system professionals to improve access to mental health services and non traditional services for children and families affected by mental health issues. It encourages parents to partner with professionals to access services: “[…] caregivers reported increased confidence as success, advocates reported accessing respite as success and administrators reported the ability to fund traditional mental health services such as family therapy as successes.” [p.880]

Focus groups were conducted with parent advocates to examine how they themselves perceive their role within the systems of care model of service delivery. Several consistent themes emerged – the unique role of parent advocates; the similarities and differences between advocates and care managers; and, the value of having personal experience. Parent advocates saw themselves as navigators for families, helping them understand the system and access traditional and non-traditional services. Because of their own experiences with mental health services, parent advocates also believed that they can communicate with family members in ways that professionals cannot. Parents (sometimes called ‘veteran’ parents) who had been through experiences similar to those for whom they advocated were recognised as providing a distinct type of assistance to navigate the complexity of services. They were recognised as having a knowledge of how things are done as well as how it felt to be the parent of a child with certain types of behaviour.


SECTION 7 – HOSPITAL BASED ADVOCACY

We have been able to find only one document which considers specifically and solely advocacy issues affecting people in institutional settings. During the 1990s, there was a growing recognition that people with a label of learning difficulty should not be incarcerated in large, long-stay institutions. In an article published in the Disability & Society Journal in 2001 [Ref: 12] an insight into these hospitals is provided: “An extensive literature shows that traditional long-stay institutions have tended to develop closed-up cultures in which hierarchies and boundaries were clear, that the residential institution exercised a degree of control in the lives of both staff and residents rarely seen in other organisational forms (Martin, 1984), and that strangers were easily recognised and often unwelcome.” [p.5].

Citizen advocacy was often chosen as the most appropriate type of scheme to support residents leaving these institutions but the question of whether this was the correct decision is raised within this article: “Citizen advocacy is not a solution to this legacy of institutional ills, but it does offer one strategy for mitigating the vulnerability and dislocation in the social networks of some individuals who have lived much of their lives in hospitals.”[p.5].

The information, skills and knowledge that learning disabled people leaving long-stay hospitals would need in order to thrive and have a decent quality of life in the community were not discussed and acknowledged at this time. A medical model of disability which does not challenge the so-called intrinsic vulnerability of disabled people is occasionally evident in this article: “Many disabled people seem likely to suffer social isolation and vulnerability, not just while they are users of services, but often in all areas of life and in the long term. The only effective safeguard lies in committed relationships with ordinary citizens who ensure some connection to the life of community.” [p.11]. This approach predates to some extent today’s more developed self-advocacy movement and reflects the predominant support for so-called normalisation theory prevalent in academic circles during the mid-nineteen eighties, a decade or more earlier than the production of this research.

However, later in the same article it is acknowledged that “….,advocacy must have a firm basis in rights and the law. If people live in institutions, regardless of whether they are part of a closure process, they should have access to effective rights-based advocacy. In practice, the only way to ensure this in large long-stay hospitals is to invite a legal agency or perhaps a national voluntary organisation with a well established reputation for its work in civil rights, into the hospital to set up an office.” [p.11].

Many of the learning disabled people served by the three schemes under review had been incarcerated in these hospitals for many years and the prospect of living alone in the community, or in smaller group homes was daunting and often


terrifying. Many residents had lost contact with their families and did not have networks of support upon whom they could rely. This evaluation [of 3 hospital-based citizen advocacy schemes in Scotland [between 1997-99] took place within the context of long-stay hospital closures.

The evaluations used the method described in the manual Learning from Citizen Advocacy Programs (O’Brien, 1987). Adapted from the original—CAPE—Standards for Citizen Advocacy Program Evaluation (O’Brien & Wolfensberger, 1981). The manual seeks to provide a basis that can be used to evaluate the extent to which advocacy schemes adhere to the principles of independent advocacy.

The opposition from hospital management and staff as the schemes evolved and began to enable people to make complaints about the way in which they were being treated and the lack of consultation with them regarding their transfer into local communities, is extensively described: “A co-ordinator and two assistants were appointed and they began their work simply by waiting around in the public areas—meeting and talking with whoever they met. As word got around that these were people who would hear complaints and share concerns, they were invited back to wards and began to learn at first hand of the difficulties and uncertainties experienced—from residents, families and staff. This caused administrators and professionals considerable discomfort, and there were meetings to discuss the ‘protocols’ of receiving and dealing with complaints. The advocacy workers quickly became swamped with urgent issues, as well as with demands for meetings to negotiate a code of conduct “ [p.2].

Considerable coverage is given to the barriers that were constructed in an attempt to sabotage the work of advocates. They were ‘palmed off’ with reasons why they could not be involved in discussions about their clients, they were also prevented from gaining access to residents and their families as well as information about the people for whom they were advocating. The excuse of confidentiality was used as a cover up for excessive secrecy and on some occasions advocates turned up to speak to their client only to be told that the individual in question had gone out, been moved or were too ill to be seen.

Whilst some examples are given about the effects that the intervention of advocates had for certain individuals within this article, these accounts are not from the actual learning disabled people involved and simply describe outcomes of the interventions.

Common threads in the reports on the three hospital schemes suggested causes of concern for the paper’s authors about how citizen advocacy has developed in the context of hospital closure programmes and, consequently, they provide suggestions as to how such schemes can make the transition from hospital to community-based schemes. Each of the 3 schemes successfully defended their independence despite pressure from purchasers. They did so by developing


strong connections with specific communities and by establishing strong networks with similar organisations: “A key move for each was to establish its office outside the hospital, and to develop relationships with individuals and associations in one locality.” [p.9].


SECTION 8 – DRUG USE

Advocacy services specifically for people who are active drug users are difficult to locate. More often people who are long-term addicts acquire mental health problems and, where they receive advocacy support at all, they are typically signposted to mental health services, including those providing advocacy support. Research evidencing the specific experiences of this service user group with regards to their engagement with advocacy services is therefore minimal. Indeed, this literature review identified only one document [66] concerning a project in the US, (The Risk Avoidance Partnership - RAP) delivering such specialised advocacy provision. This research report again extends the UK understanding of ‘advocacy’ as a term: "[...] it is necessary to recognize the potential contribution active drug users can make to the promotion and implementation of public health efforts among their peers and in their broader communities. In some cases, they may be more effective and reach more hidden locations and at-risk populations than other community health workers or community researchers." [p.15].

Whilst having a definition which incorporates aspects of a UK-centric perception of peer advocacy, this action research project used promotion of health as its primary tool of engagement. It is therefore not (as defined within a typical UK setting) ‘advocacy’, as the action researchers had to meet very strict criteria in order to be eligible to act as researchers and peer advocates: "Eligibility requirements included being at least 18 years of age, having used either heroin or cocaine/crack in the prior thirty days, and not currently seeking drug treatment. These selection criteria were designed to increase the likelihood that trainees could provide intervention to other drug users in the context of active drug use." [p.5]. The project aimed to educate drug users so that they could address their harmful practices in order to prevent the spread of disease.

Important lessons can be derived from this research as it helps to explain and emphasise the huge (positive) impact that peers, including peer advocates can have. "They indicated a wide variety of positive experiences, including feeling good about having helped others and contributing something positive to the community. Many also indicated positive experiences related to their own improved health and well being, including increasing their knowledge about risk and prevention and recognizing the potential of this work to assist them to reduce their own drug use. Further, many indicated increased respect by their peers and other community members, as well as an improvement in their perception of self." [p.13].

Using Public Health Advocacy (PHA) to further Risk Avoidance Promotion (RAP) the use of peer advocates engaging directly with other drug users helped discernibly to reduce risk and advance the well-being of the advocates: "PHAs overwhelmingly reported that they were motivated to participate in the RAP training in order to do something positive for their community and to make


positive changes in their own lives. Several indicated that they hoped these changes would be long-lasting and result ultimately in job opportunities on a more steady or even permanent basis." [p.11]. The long term benefits for individual project participants as well as the wider community were recorded in this article: "When asked their expectations of long-term project outcomes, most PHAs in the training program reported expecting a positive impact, such as overall increased awareness of risk and prevention among drug users and others in their communities, decreased infectious disease overall, and saved lives. Many also believed that participation in the project would have positive long-term outcomes for themselves, such as potential future jobs (modeling project staff), increased respect by their peers, and reduction or cessation of their drug use." [p.13].

Undertaking the role of peer advocacy opened the door to what could prove to be life-saving opportunities for some of the participants of this training: “Finding positive paid opportunities to continue the “job” of peer and public health work may reduce reliance on illegal sources of income and may offer many an entree into more mainstream employment opportunities that take advantage of their interest in and capacity to engage in public health education and advocacy, as well as motivation to stop drug use and maintain sobriety." [p.16].

The article concluded that projects such as this are vitally important in the struggle against AIDS: "Innovative prevention programs that build on the capacity of those at risk to influence their peers and thereby increase their own resolve to engage in prevention efforts must continue to emerge in order to halt the spread of HIV." [p.16].


SECTION 9 – PEOPLE WITH SPECIFIC PHYSICAL IMPAIRMENT

Local organisations run and managed by people with physical and sensory impairments, which have often provided advocacy services, have been decimated over the last 5-10 years as a consequence of the concentration of funding within large, centralised charities and the time-limited nature of funding from sources such as the Big Lottery, Comic Relief, The Office for Disability Issues (ODI), etc. Certain service user groups are targeted, [without clear explanation], for short periods of 2-3 years, by central and local government and large funders. The barriers which prevent many service users from exerting choice and control over their daily lives remain intact and their needs for advocacy support to battle with the bureaucracies of benefit agencies and service providers remain unmet. Consequently our literature review identified only one recent, relevant document concerning impairment-specific advocacy provision. This mirrors the reality that funding applications are usually more successful if they relate to the provision of advocacy aimed at people with learning difficulties, who it is patronisingly assumed require advocacy more urgently than other groups of service users.

The one document alluded to above [08] from 2007 contains case studies from a resource centre for people with hearing impairments. This centre provides an advocacy service which uses British Sign Language (BSL). However this is far too short an article to get a full sense of the powerful benefits that engagement with the St Helen’s Deaf Advocacy Project brings to the deaf community: "[...] comments (from members of the deaf Community) about our advocacy service are overwhelmingly positive, indicating that they really value the service." [p.1].

This advocacy service has a record of supporting hearing impaired people, including ex-offenders, with a variety of issues and its independent advocacy support has been recognised and valued by agencies such as the probation service.


SECTION 10 – DOMESTIC VIOLENCE

LLA was unable to identify any documents relating to the provision of domestic violence advocacy in the UK, though a review of advocacy services in Newcastle [Ref: 70], cited in the section on generic advocacy in this report did include an interview with a domestic violence worker who, in particular, raised the need for more advocacy in this area, especially for ‘honour violence.’

The one document we did find for inclusion in this section was an article published in an American academic journal. In 1995 legislation was introduced which brought mandatory arrest into force in the case of domestic violence. Two years later, after domestic violence advocates had reported an increase in the number of arrests of victims of such violence, an advocacy-research partnership adopting a feminist and activist research model undertook research, which sought to recommend policy changes to tackle this problem. This partnership maintained that: “solutions that address domestic violence make an alliance between researchers and advocates a natural fit.” [p.1].

This is a heavily process-driven article analysing the detailed research relationship and interaction between advocates, researchers and funders. The study which forms the basis of this article, [written from an advocate perspective], was: “specifically designed to affect policy to offer insight into the challenges faced and to make recommendations for successfully incorporating social action in advocacy–researcher collaborations.” [p.1].

The document does not substantively deal with either the topic of advocating for victims of domestic violence (the area in which the advocates worked) nor does it deal with how such advocates engage with their advocacy partners.

The study culminated in a report “The Family Protection and Domestic Violence Intervention Act of 1995: Examining the Effects of Mandatory Arrest in New York City” (Haviland, Frye, Rajah, Thukral, & Trinity, 2001).

Despite its potential interest therefore as a comparative study from New York City, it is not cited as a resource of valuable data in the area currently under investigation by LLA.


SECTION 11 – CONCLUSIONS AND RECOMMENDATIONS

The documents included in this literature review provide key information regarding gaps in advocacy provision and research which sets out to record the experiences of advocacy users from their perspective, rather than from the point of view of those who sometimes say they are speaking on behalf of those eligible to use community care, health and other services such as parents, carers, professionals, friends, family members and others. In many instances where reviews, evaluations or research into advocacy services have been undertaken, including it transpired many of those considered as part of this literature review, the voice of service users is absent. Therefore it is very often difficult to judge whether advocacy has been effective for service users, in terms of cost verses benefit; changes in service provision; empowerment of the individual or group practising self-advocacy (or, for that matter, using other advocacy services: Nor is it always possible to make knowledgeable and meaningful comparisons between different types of advocacy. This is a crucial information gap not only for funders, but also for policy makers at local and national government levels.

The first single largest category of documents identified during our search relates to people with learning difficulties. The Valuing People agenda; learning Difficulty Partnership Boards; and, probably most significantly, heightened demands from an increasingly de-institutionalised and hitherto largely ignored section of society, have combined to ensure that people with a label of learning difficulty have gained significant recognition and change, in terms of their peer and self-advocacy in particular. There has most notably been an exponential growth in self-organisation in general and in self-advocacy most specifically amongst people with a label of learning difficulty which has achieved a major impact upon services and the support for self and peer advocacy delivered by and for this section of the Disabled Community.

The second largest quantity of documents in terms of those selected and considered for inclusion in this review, has been described by us as ‘Generic Advocacy’. This means that documents have been included in this section if they comment on advocacy provided to more than one section of society or community of interest. The [comparatively] large proportion of documents identified as falling into the category of generic advocacy is explained by a number of factors: besides research conducted in Wales and England concerning more than one type of advocacy, we have also included in this category: research into the specific experiences of Black and Minority Ethnic users of more than one type of advocacy; Scottish users of generic advocacy; and 4 comparative international studies [in addition to comparative studies included in other sections of the report] which reflect upon the experiences of advocacy users outside the UK.


The third largest category in which documents were considered, includes advocacy for older people. Older People, whilst enjoying no statutory entitlement to receive advocacy support, are the largest demographic group using such provision. A third of older people are eligible to use community care services and with the aging population in the UK, demand for advocacy amongst this section of society is bound to increase with heightened expectations of freedom, independence and choice occurring as people live longer.

Fourth, in terms of the numbers of documents identified and selected for consideration, is ‘Mental Health’. Mental health system users are the largest single group of disabled people in society and have the strongest [albeit severely restricted] legal framework for the funding of advocacy. It is perhaps therefore no surprise that mental health system users and survivors constitute the largest distinct group of Disabled People about whom research concerning engagement with advocacy has been conducted. The fact that a large charitable funder [Comic Relief] now has had a specific programme dealing solely with UK applications for mental health projects for at least 3 years may to some limited extent skew already precarious funding arrangements temporarily in favour of this segment of the disabled community. This, combined with recent changes in mental health legislation has resulted in an increase in the provision of advocacy to this group. Such legislation, along with the Valuing People agenda has provided some extremely limited funding for advocacy schemes supporting those in the mental health system and (to some extent) people with learning difficulties.

Advocacy provision is clearly piecemeal across England and Wales: There are obvious gaps in provision and in the availability of a range of advocacy services. The gaps we have identified in this report therefore relate purely to areas in which we feel there is the least information about user engagement with advocacy. We acknowledge and recognise that this is by no means the same thing as saying that there is sufficient advocacy provision in other areas. Furthermore, we also recognise that the areas highlighted here are those in which there is limited or no data in comparison to the insufficient research which has been undertaken in other areas of advocacy: arguably, far greater research concerning user engagement with all types of advocacy is needed. There is also clearly a need for qualitative comparative research exploring distinctions between user experiences of different approaches towards advocacy, comparing engagement experiences with self and peer advocacy to other experiences of advocacy. No research has been identified which looks at this potentially rich seam of investigation. The approach we have taken has simply highlighted sections of society or communities of interest in which we have been unable to find much or (in some cases) any research data concerning their engagement with and experiences of advocacy. Those communities identified as possible priorities for commencing investigation of their experiences of their engagement with advocacy during and beyond Phase 2 of this review concern those who:


Misuse drugs and alcohol; Experience domestic abuse; Face barriers to communication; Are Disabled People either seeking asylum or who are refugees; Are in residential settings; Are HIV positive; Are on the autistic spectrum.

We therefore propose that during Phase 2 of this research LLA identifies a service which specifically provides advocacy to each of those groups most under-represented in terms of our literature review. We will attempt to ensure that the advocacy organisations we contact in each of these areas represents overall a spectrum of different approaches towards delivering advocacy.

We will contact the groups identified to arrange a visit with the aim of carrying out consultation work with a small number of project service users concerning their experiences of engagement with that service. Because of the resources and timescale available for this phase of the project, this exercise can only really begin to map and set out some markers for more substantive research which it is hoped may be conducted subsequently. This consultation work will consist of structured questions which seek to identify the expectations of and outcomes experienced by those who use the services in the identified projects, in particular regarding the quality, availability and accessibility of advocacy. This process will it is anticipated result in a report which should propose a model or framework for researching user engagement which can be adopted by ACUK, advocacy commissioners, advocacy providers and funders.

As part of this process, we will aim to ask the organisations that we visit whether they use any on-going evaluation methods which entail collecting feedback from service users, and if they do, whether they are willing to share any of the information they have collected with LLA for the purposes of this project. In our experience a lack of resources can sometimes mean that the delivery of advocacy itself is prioritised by small organisations at the expense of measuring and evaluating its impact. Services would benefit from on-going evaluation of the support they provide, if only for the purpose of strengthening the applications for funding that they submit. We would say however that independent evaluation is also invaluable to assist services in ensuring that they are implementing best practice and that their service is delivering what is needed by the communities which they exist to serve.

Other than the ODI framework document [36] there appears to be a singular lack of research evidence concerning both the cost of user engagement and an analysis of the opportunity costs and risk to services resulting from a failure to engage with service users. Anecdotally it is evident from the documents we have read that the most robust and sustainable advocacy services appear to be those which engage extensively with their service users. In contrast, those services


unable to demonstrate to funders that service users themselves identify a clear benefit from engagement with advocacy, are likely to be the most vulnerable to funding cuts and related political changes.

In light of this discovery, an area which we feel would benefit from significant future research relating to user engagement, would be to seek to conduct some primary investigative research to begin mapping the cost benefit equation for user engagement with advocacy. With the time and funding available, it would be unrealistic for LLA to undertake to conduct this work in Phase 2 of this particular project. Such primary research we suggest is likely to include (initially) surveying a selected representative cross section of advocacy providers concerning the costs of user engagement as well as the potential detriment to services that could arise from a failure to engage. Nonetheless, as this appears to be clearly an important gap in the research evidence available concerning user engagement, it is highlighted here as an area worthy of some further research, perhaps during 2010/2011, for which specific funding may need to be sought.


APPENDIX A – COMPLETE LIST OF REFERENCES

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APPENDIX B – SUMMARY TABLE OF DOCUMENTS USED FOR THIS PROJECT

Key to General Topic

BME – Black and Minority EthnicGA – Generic AdvocacyCYP – Children and Young PeopleSPI - Specific Physical Impairment

HBA – Hospital-based AdvocacyLD – People with Learning DifficultiesMH – Mental HealthOP – Older PeopleDU - Drug useDV - Domestic Violence

Key to Type of DocumentAJ - Academic JournalCS - Case StudyNJR - Non-Journal ResearchPP - Policy & PracticeRAS - Review of Advocacy ServicesRIP - Research Information PackAPM – Advocacy Publicity Material

Ref

Doc

Ty

pe Document Title Date

BM

E

G

A

CYP SP

I

HB

A

LD MH

OP

DU DV

01 PP Action for Advocacy - Human Rights: A Toolkit for Advocates

2009X

02 PP Advocacy Across London - Advocacy Charter 2004 X


Impact Assessment

03 AJ BMJ - Global university course on advocacy 2005 X

04 AJ British Journal of Social Work - Advocacy in Practice: The troubled Position of Advocates in Adult Services

2005

X

05 R Children and Youth Services Review - Voices of parent advocates within the systems of care model of service delivery

2009

X

06 CS / APM

Chinese Mental Health Association - user self advocacy project case study

2007X

07 RAS/PP

Community Care - Proven practice: Self advocacy for those with high support needs

2009X

08 CS / APM

Deafness Resource Centre - Case studies 2007 X

09 RAS Dementia North - Hear what I say: Developing dementia advocacy services

2003X X

10 PP DH - National Standards for Provision of Children’s Advocacy Services

2002X

11 AJ Disability & Society – Advocacy and Autism 2007 X

12 AJ Disability & Society - Advocacy in a Cold Climate: a review of some citizen advocacy

2001 X


schemes in the context of long-stay hospital closures

13 AJ Disability & Society - Defining and organizing self-advocate centred groups: implications of survey research on self-advocacy groups in Japan

2004

X

14 AJ Disability & Society - Inclusion Exclusion and Disabling Barriers

2000X

15 AJ Disability & Society 12 p367- Locating self-advocacy in models of disability

1997X

16 AJ Disability & Society 12 p647 - self-advocacy for People with learning difficulties

1997X

17 AJ Disability & Society - self-advocacy, disability politics and the social model

2001X

18 AJ Disability & Society - Social Identity and People with Learning Difficulties: implications for self advocacy groups

1998

X

19 AJ Disability & Society 12 p43- The impact of self-advocacy on families

1997 X

20 RAS DRC - Delivering the Choice and Voice Agenda: The role of independent advocacy services

2006

X


21 NJR Get Heard - Commissioning advocacy for older people: A Common Lack of Approach?

2007X

22 PP Independent mental capacity advocate service - Helping people who are unable to make some decisions for themselves

2007

X

23 AJ Journal of Learning Disabilities - Partnerships, advocacy and independence: Service principles and the empowerment of minority ethnic people

2002

X X

24 NJR JRF - Advocacy for Parents with learning difficulties

1998X

25 NJR JRF - Info, advice & advocacy for older people 2005 X

26 NJR JRF - Mental health advocacy for black and minority ethnic users and carers

2002X X

27 RAS Kings fund - Building Bridges for Health - Exploring the potential of advocacy in London

2004X

28 NJR Laurie Goodley and Armstrong - Self-advocacy Civil Rights and the Social Model of Disability

2001X

29 PP Mencap - Advocacy Strategy: Mencap’s three year plan for supporting people with a learning disability to speak up for themselves

2004

X


30 CS Mind - Case studies re: Peer Advocacy 2007 X

31 NJR Mind - guide to advocacy 2006 X

32 RAS Mind - With us in mind - Service user recommendations for advocacy standards in England

2006

X

33 PP National Autistic Society - the demand for advocacy

2003X

34 RAS National Children’s Bureau - Models of peer advocacy

2004X

35 CS No Barriers No Borders 2008 X X36 RIP/

PPODI - A framework for research on costs and benefits of independent advocacy

2009X

37 RAS ODI - Access to independent advocacy - an evidence review

2009X

38 NJR Older People’s Advocacy Alliance (OPAAL) - A voice that wasn’t speaking: Older People Using Advocacy and Shaping its Development

2006

X

39 CS Older People’s Citizen Advocacy - Case study 2007 X

40 CS Older people’s Citizen Advocacy in York 2007 X

41 AJ / Pubmed - community health advocacy 2006 X


APM42 AJ Pubmed - harnessing the power of advocacy-

research collaborations2008 X

43 AJ Pubmed - Nurses Practice Beyond Simple Advocacy to Engage in Relational Narratives: Expanding Opportunities for Persons to Influence the Public Space

2008

X

44 AJ Pubmed - Residents as health advocates: The development,implementation and evaluation of a child advocacy initiativeat the University of Toronto

2007

X

45 NJR Raised Voices - Do looked after children with communication impairments need an advocacy service

2001

X

46 PP Rick Henderson - Empowerment through advocacy: mental health advocacy in focus

2004X

47 NJR SCIE - Developing mental health advocacy with African & Caribbean men

2007X X

48 RAS SCIE - Personalisation and Learning Difficulties: A review of evidence on advocacy and its practice for people with learning disabilities and high support needs

2009

X


49 NJR Scope - Independent Advocacy Campaign - Advocating for Equality: physical, sensory, communication & multiple impairments

2003

X

50 CS Scottish Independent Advocacy Alliance - A voice through choice: Stories about independent advocacy

2008

X

51 PP Silkap Consultants and the Office for Public Management (OPM) - A Standards Framework For Delivering Effective Health and Social Care Advocacy for Black and minority ethnic Londoners

2002

X X

52 RAS Social Care Workforce Research Unit (SCWRU) - Scoping review of the research and evidence base relating to advocacy services and older people’s entry into care homes in England

2009

X

53 NJR The Children's Society - When will we be heard? Advocacy provision for disabled children and young people in England

2007

X

54 PP The Sounds Good Project - Growing Up Speaking Out: A guide to advocacy for young learning disabled people in transition (14-25 yrs)

2005

X X

55 RAS/NJR

The Welsh Advocacy Grant Scheme – Impact and Effectiveness

2005 X


56 NJR Thomas Coram Research Unit - Findings from an Evaluation of the Voice Advocacy Service

2006X

57 RAS / APM

UK Advocacy Network – About UKAN 1993 X

58 RAS Westminster advocacy service for senior residents - Adding value through Advocacy

2004X

59 NJR Shaping Our Lives - Interim Report 1997 X

60 PP Linda Ward (Ed) – Innovations in Advocacy and Empowerment

1998X

61 RAS Self Advocacy in Action – Celebrating Self Advocacy: What we have done over the years

2005X

62 RIP Norah Fry Research Centre and Bristol Self Advocacy Research Group – Researching Together Conference Pack

1999

X

63 NJR Age Concern Wales - Advocacy Counts 2007 X

64 NJR Age Concern Wales - Advocacy Counts 2 2008 X

65 AJ Journal of intellectual disabilities – survey of self advocacy groups for LDs in an England region

2002X

66 AJ Pubmed - Training active drug users as health advocates

2006 X


67 NJR Comhairle. The Jigsaw of Advocacy - A Research Report.

2003 X

68 PP/RAS

Advocacy: A Rights Issue. A Reflection Document. Forum with People with Disabilities (Ireland).

2001X

69 NJR Thomas Coram Research Unit. Advocacy for Looked After Children and Children in Need: Achievements and Challenges.

2006X

70 RAS Newcastle City Council. A Review of Newcastle’s Advocacy Service Supporting Research.

2009X

71 NJR SCIE - Stakeholders Participation Position Paper 6 - Supporting Self Advocacy.

2007 X

72 PP A Clear Voice, A Clear Vision - The Advocacy Reader, UKAN.

2001 X

73 NJR Some observations on the American Advocacy scene

2001 X

74 PP Independent Specialist Advocacy In England and Wales: Recommendations for Good Practice

2002X

75 NJR Older people’s perspectives - devising information, advice and advocacy services

2003 X


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