in Partnership Action Tackling Drugs in Scotland Advocacy for Drug Users advocacy A Guide Effective Interventions Unit SCOTTISH EXECUTIVE
Scottish Executive Effective Interventions Unit Remit The Unit was set up in June 2000 to: Identify what is effective and cost effective practice in prevention, treatment, rehabilitation and availability and in addressing the needs of both the individual and the community. Disseminate effective practice based on sound evidence and evaluation to policy makers, DATs and practitioners. Support DATs and agencies to deliver effective practice by developing good practice guidelines, evaluation tools, criteria for funding, models of service; and by contributing to the implementation of effective practice through the DAT corporate planning cycle. Effective Interventions Unit Substance Misuse Division Scottish Executive St Andrew s House Edinburgh EH1 3DG Tel: 0131 244 5117 Fax: 0131 244 3311 EIU@scotland.gsi.gov.uk http://www.drugmisuse.isdscotland.org/eiu/eiu.htm
Effective Interventions Unit Advocacy for Drug Users: A Guide What is in this guide? Definitions of advocacy and a brief outline of the different types The role of advocacy in ensuring accessibility and best outcomes for drug users and their families Information on who currently provides advocacy Who is best placed to deliver advocacy Types of advocacy that are most appropriate to this client group What is the aim? To help DAATs and local partners consider whether, and how, advocacy could be incorporated into the development of Integrated Care. Who wrote this guide? Vered Hopkins, Emma Harvey and Karin O Brien of the Effective Interventions Unit. Who should read it? This guide is aimed at DAATs, local partners and service providers.
Crown copyright 2004 ISBN 0-7559-3764-3 Further copies are available from: Effective Interventions Unit Substance Misuse Division Scottish Executive St. Andrews House Edinburgh EH1 3DG Tel: 0131 244 5082 Fax: 0131 244 3311 EIU@scotland.gsi.gov.uk http://www.isdscotland.org/goodpractice/effectiveunit.htm The text pages of this document are produced from 100% elemental chlorine-free, environmentally-preferred material and are 100% recyclable. Astron B36458 06-04
Contents Introduction 5 Chapter 1: What is advocacy 7 Chapter 2: Could advocacy be useful for drug users? 13 Chapter 3: Provision of advocacy services to drug users 19 Chapter 4: Advocacy services for young people 23 Chapter 5: Advocacy services in rural and remote areas 27 Chapter 6: Planning and delivering advocacy services 29 Appendix 1: Participants at the consultation seminar 35 Appendix 2: Results of questionnaire to service providers 37 Appendix 3: Useful information sources 41 References 43 3
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Introduction Integrated Care for Drug Users: Principles and Practice (EIU 2002) identified the potential importance of advocacy as part of the overall process of treatment, care and support for drug users. More recently, the Mind the Gaps report (SACDM, SACAM 2003) identified advocacy as one of the key features of service provision for people with cooccurring substance misuse and mental health problems. The purpose of this EIU guide is to help DAATs and local partners to consider whether, and how, advocacy could be incorporated into the development of Integrated Care. However, there is currently only limited advocacy provision targeted specifically at drug users and little evaluation or research evidence. It is important, therefore, that we emphasise that this guide aims to offer a first step towards the development of advocacy services for drug users. Advocacy is widely recognised as an important way of enabling and empowering people to make informed choices and to gain, and remain, in control of their own lives. It helps people to have access to the information they need, become aware of the options open to them and make their views and wishes known. Advocacy safeguards people through encouraging good practice and preventing neglect or abuse. It can help to prevent crisis, support people during crisis and ensure service users and their families achieve the best outcomes from the range of services they use. This document aims: to consider what advocacy is and to outline the different types of advocacy to set out the role of advocacy in ensuring accessibility and best outcomes for drug users and their families to present information on who currently provides advocacy to drug users to look at who is best placed to deliver advocacy to consider the types of advocacy that are most appropriate for this client group. This document also sets out some of the issues and questions that DAATs and their partners may need to think about when setting up or extending advocacy services. It goes on to consider briefly the specific issues involved in setting up advocacy provision for young people and for service users in rural areas. Research and Consultation The process of gathering evidence to inform this document confirmed that only a limited amount of evidence and information is currently available on advocacy for drug users. To help us extend the evidence base for this guide we have conducted: a review of available literature a survey of a selection of treatment and care service providers (see appendix 2) a one-day consultation event with a range of key individuals from advocacy and treatment and care service providers (see appendix 1) four focus groups with service users in four different areas throughout Scotland designed and led by the Scottish Drugs Forum (for a copy of the full report contact EIU). 5
THANK YOU The EIU wishes to thank all those who have participated in the survey and the consultation event, and all those who helped by contributing examples, information and views. In particular we would like to thank the service users who participated in the focus groups and provided us with valuable information and SDF for organising and running the focus groups. We would also like to thank the Advocacy Safeguards Agency and The Scottish Independent Advocacy Alliance for their detailed advice and information on independent advocacy. 6
Chapter 1: What is advocacy? Advocacy is recognised as playing an important part in helping marginalised groups become more socially included. There are different types and different forms of advocacy. It can take the form of an ordinary activity, part of every day life, that is provided and received by most people at some point in their lives. For example, many of us may ask a family member or a friend to accompany us to a formal appointment to help us either by speaking on our behalf or by helping us to express our views. Advocacy can also be a formal organised activity for people who are vulnerable and excluded, treated badly because of prejudice, have no family or friends to support them or whose family and friends are part of the problem. The aims of advocacy A Independent Advocacy A Guide for Commissioners: Supplement (Scottish Executive 2001) suggests that advocacy has two main themes: Safeguarding individuals who are in situations where they are vulnerable. Speaking up for, and with, people who are not being heard, helping them to express their views and make their own decisions and contributions. Information Advocacy is not new. People do it every day for their children, for their elderly or disabled relatives, and for their friends. Concerned individuals or groups do it for people who are particularly vulnerable or undervalued. (Advocacy: A Guide to Good Practice, 1997). Advocacy is about promoting people s rights and helping them maintain control over their own lives. Advocacy can promote social inclusion and raises awareness of the obstacles faced by excluded and isolated individuals. Advocacy involves supporting and empowering people to speak for themselves, speaking on behalf of people who are unable to speak for themselves, helping people to explore the range of options open to them and clarifying a particular course of action. It can enable people who are marginalized, such as drug users, to express their views, to be heard and to have a say in crucial decisions that affect their lives. From the evidence that we have gathered, we have identified a number of values and beliefs that underpin the provision of advocacy services. These include: all service users have the right to be heard and for their views to be respected with the right help, everyone can learn to communicate more effectively and gain more control over their own lives everyone has the capacity to contribute and people need help to overcome issues that prevent them from contributing the social and economic exclusion of some people in society who are seen as less important is always a risk there is a need for partnership work between those who plan and provide services and those who use services some clients feel let down by services. Service providers are not always aware of these situations. 7
What is advocacy a response to? Key Ideas on Independent Advocacy (Advocacy 2000) suggests that advocacy is a response to four general problems: Lack of community contact with services and the social isolation and exclusion of some people The disempowering effects of some services and a lack of independent support for some individuals People lacking in confidence, experience, or skills to stand up for themselves General public prejudice or ignorance about certain people Who can advocate? Anyone can act as an advocate as long as an individual has asked them and they are willing to become involved in that way. An advocate can speak on behalf of a wide range of people to help ensure they receive what they are entitled to. Very often people choose a relative, a friend or a carer to advocate on their behalf. Some people, provided there is no conflict of interest, choose another service provider to advocate on their behalf. Others choose either a trained volunteer advocate or a professional advocate working through an independent advocacy agency. Yet others ask the help of self-help groups or voluntary organisations. Our review of the evidence and the responses from our consultation suggests that an advocate is someone with competent listening, negotiating and communicating skills; that an advocate needs to earn the trust of the person they are advocating for; and that an advocate should have good understanding of the person s situation and a working knowledge of available services. The role of the advocate The dilemma for the advocate is how to give information, not advice, and how to represent the client without taking control on the decisions made (EIU consultation event, 2003). The primary role of the advocate is to be on the side of the person they are supporting and ensure that his/her opinions and wishes are being listened to. The advocate should follow the agenda of that person and work in a way that is directed by that person s ideas, hopes, wishes and ambitions. It is important to act in a nonjudgemental way and, as far as possible, avoid actions that might compromise neutrality and loyalty to the supported person. Our research and consultation suggest a number of key factors that seem to influence the effectiveness of an advocate. These are set out in the following table: 8
An advocate should be articulate and precise in expressing the views of their client An advocate should not X feel defensive, protective or sympathetic towards the client whenever possible support the client to speak for themselves rather than act for or represent them know how to professionally use their position to make the client s views and wishes heard make sure the client knows their rights ensure the client knows what is happening and is kept informed at every stage be knowledgeable about the correct procedures to follow (when raising issues with professionals e.g. in health or social work) ensure that they are putting across what the client wants, rather than what they think is best for the client build up trust between themselves and the client and treat the client with respect create a good working relationship with other professionals so that they do not feel threatened by the presence of an advocate be available (where possible) when the client needs them X X X X X X be judgemental or critical take over client s lives encourage clients to think that they are likely to get everything they want be swayed by their own opinions or views be pushy or intimidating towards the client or other professionals befriend the client or become embroiled in situations outside their remit/capacity Note: This table has been created by EIU from the analysis of our findings. Types of advocacy There are different types of advocacy. The Scottish Executive, through the Advocacy Safeguards Agency is promoting the development of Independent Advocacy. This means that advocacy projects/services, and their advocates, operate independently of other service providers. This removes any conflict of interest and enables an independent focus on the individual. The aim of independent advocacy is to ensure that advocacy is completely on the side of the person. 9
There are 3 main models of independent advocacy: Individual professional advocacy This is carried out by professional, trained, paid or unpaid individuals who are independent of any service provider or agency. The primary loyalty and accountability of independent advocates is to the people who need advocacy rather than to the agencies providing health and social services. Individual professional advocacy services often provide support to a range of individuals or groups for short or long periods of time, depending on what support is required. These services are set up to ensure that they are as free as possible from interests that conflict with those of the people they support. Independent advocacy should be available to anyone. However, it can be especially helpful for people who do not have a family member or a friend to help them, and do not want to rely on providers of other services for support. It is also useful when support is needed from somebody neutral, who does not need to be concerned about conflicting interests with their own employer or colleagues. Individual professional advocacy is a useful way to support people to develop their confidence and aspirations, and ensure they receive the services to which they are entitled. Citizen advocacy Information The Advocacy Safeguard Agency has published a mapping report: A Map of Independent Advocacy Across Scotland (2003-4). The report provides a comprehensive mapping of services and includes a description of individual projects, sources of funding and information on development plans. For a copy go to: www.advocacysafeguards.org The objective of citizen advocacy is to encourage ordinary people to become more involved with the welfare of those who might need support in their communities. Citizen advocacy projects usually involve unpaid ordinary members of the community speaking on behalf of another person to protect their interests. This is usually done on a one-toone basis and involves providing general long-term support to an individual by helping them to develop a trusting relationship with a member of the community and regaining their place within the community. Citizen advocacy projects also aim to have a lasting impact on the community, not just on the individual they support. By using citizens to bring about greater social inclusion, such projects aim to support local communities to be more inclusive, raise awareness of local services and improve the quality of services. A citizen advocate would usually: work with only one person at a time work voluntarily and not be motivated by personal gain encourage the person they are supporting to present their own interests have a personal commitment to support the individual they are working with. Collective advocacy Collective advocacy, or group advocacy, as it is sometimes called, is when a group of people with common views on a particular subject or similar experiences join together to make their voices heard. The idea behind collective advocacy is that people possess more power, have more sway and are better at supporting one another when they come together and organise as a group. Collective advocacy often takes place when people have become so dissatisfied with something that they feel they have to complain collectively to be heard. 10
Collective advocacy entails forming a group to meet and discuss possible courses of action, delegating duties to group members and, in some cases, electing a chair or a spokesperson. It is an effective form of advocacy to deal with issues that affect a whole group of people and provides a mechanism for a group to support individuals. Collective advocacy is not addressed in this guide. For more information on this type of advocacy see Principles and standards in Independent Advocacy, Part B, Advocacy 2000, January 2002. The 2 other types of advocacy most commonly mentioned in our survey and consultations were: Advocacy provided by other (non-advocacy) services Many people who are already engaged with services receive advocacy from those services or from other (non-advocacy) service providers. Although the staff carrying out this kind of advocacy are often not formally trained advocates, they may have substantial knowledge and experience of the needs and aspirations of a specific client group and the nature of their condition. However, their effectiveness as advocates may be compromised if the interests of the service they work for conflicts with that of the client. I use my worker [as an advocate] because I trust her and I don t have much contact with my family (Service User, EIU focus groups 2004). Family and friends will be there long after the services pull out (EIU questionnaire, 2003). Advocacy provided by family and friends The most common form of advocacy is that provided by family and friends. Often people provide this kind of support to their relatives and friends without realising they are acting as advocates. This form of advocacy could be as simple as a friend or family member accompanying someone to a doctor s appointment or going along to the job centre to help fill out forms and ask for advice. For many people, family and friends are the only constant support they have throughout a difficult period. SUMMARY Advocacy is about protecting and empowering people and not about taking over their lives. Advocacy can be an ordinary activity provided and received by many people and part of every day life. Anyone can be an advocate but advocates should ensure that they act only on the side of the person receiving support. This is the aim of independent advocacy. There are different types of advocacy including independent advocacy and more informal advocacy by providers, family or friends. 11
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Chapter 2: Could advocacy be useful for drug users? There is a growing recognition of the benefits of advocacy to marginalized groups, including drug users (see Mind the Gaps SACDM,SACAM 2003). Drug users often experience a range of problems and need to deal with a range of agencies. At different stages of their recovery process, individuals may benefit from different types of advocacy. For example, a drug user who is not in touch with services may rely on family and friends for advocacy. Once they have begun receiving treatment, clients may rely on staff from the treatment and care services to advocate on their behalf. When they are ready to move on, recovering drug users could benefit from the help of an independent advocacy agency. What are the problems drug users face? Evidence shows that people who have drug misuse problems will, in many cases, have a range of other difficulties in their lives. These difficulties include problems with housing, family relationships, employment, The request for advocacy services from both drug and alcohol users has risen sharply. Advocacy can help restore faith amongst clients that their needs are being addressed in a more holistic fashion. (EIU Questionnaire 2003). offending behaviour and debt. This means that a wide range of interventions and support will need to be deployed to address those problems (Integrated Care for Drug Users EIU 2002). Service users commonly feel that support is offered to them at the beginning of the recovery process and that, very often, when they are ready to move on to services such as employability or housing, support is no longer there. Consequently, service users are often unaware of the options open to them, the specific services they can access and how to go about accessing these services. In addition, drug users often suffer from a wide range of barriers and low self-esteem. They find it difficult to express their views and are often not skilled at getting people to listen to them. Advocacy and drug users The evidence from the EIU advocacy survey, consultation seminar and focus groups suggest that service users and providers consider advocacy to be an important component of effective treatment and care provision. Reasons given by service users and providers for the usefulness of advocacy included: Drug users often need to use a wide range of specialist and generic services. Advocacy can help them find out what services are available and how to access them. By being knowledgeable about specific subjects, an advocate can add weight and credibility to a client s case. Advocacy can help people understand their rights and the range of choices they have. I had to go up to the appeal for the social. I went up myself and just got more or less kicked out the door. Then I took someone else with me and it got sorted. That s cos I had somebody up with me and they spoke for me. (Service User, EIU focus groups 2004). 13
In addition, service users and providers identified a number of activities that they associated with advocacy but which would not fall within the remit of an independent advocate. These activities might include a range of support, such as helping clients to sort out and understand the large amounts of information they receive which can be confusing. helping service users who find reading and writing difficult to complete forms and read a range of information sources. helping clients who may not represent themselves very effectively to make themselves heard by telling them what to expect from a meeting, and how to conduct themselves when speaking to other people. helping clients to be realistic about what to expect from services and what is expected from them when they use services. helping service users to deal with the negative attitudes towards them from a range of professionals. When planning advocacy service for drug users, it will be important to define the scope of advocacy and to make the core remit of the provider(s) explicit. It will also be crucial for the advocates to know where clients can get the other support that they might need. A recent mapping exercise of independent advocacy agencies in Scotland (ASA 2004) identifies substance misusers and other marginalized groups, including the homeless and people leaving prisons, as hidden groups for whom there is the largest gap in independent advocacy provision. The Mind the Gaps report (SACDM, SACAM 2003) identifies advocacy, alongside early intervention, broadly based intervention and person-centred intervention, as a key feature of service provision for people with cooccurring substance misuse and mental health problems. The report recommends that advocacy services should become integral to the care plans for this client group. Where and when is advocacy most needed? The majority of the service users who participated in our focus groups had personal experience of having someone speaking on their behalf or representing them. Personal treatment was identified as the area where most participants needed advocacy. This included accessing GP services and negotiating changes in treatment interventions. Some felt that without somebody advocating on their behalf, their chances of registering with a GP or receiving access to a range of treatment and care services would have been reduced. Other service users received advocacy which included support with benefit appeals, court attendances and housing. Advocacy is not just about complaints. There are occasions when clients who have become very close to service providers want also to talk to an independent person who is not directly involved with the provision of that service. This can be a sign that the client wants to move on. (EIU Consultation Seminar 2003). The majority of the service providers who responded to the EIU survey reported that many of their clients needed advocacy support when dealing with agencies including housing, social work, training & employment, children and family teams, GPs and the police. More specifically, the issues with which clients needed advocacy included benefit, finance and debt, physical and mental health, training and employability, substitute prescribing, and childcare. 14
Information Relatives and carers of substance misusers can also benefit from advocacy services. EIU s review: Supporting Families and Carers of Drug Users (published November 2002) describes how those taking on carer roles can often experience difficulties in dealing with agencies such as NHS, Jobcentre Plus and Education services. These experiences, along with the self-blame and guilt that families can feel, can result in them having little energy or confidence in challenging decisions or systems. Many family support groups throughout Scotland offer forms of advocacy to relatives and carers of substance users. For more information contact Davy Macdonald, National Community Engagement Officer, Scottish Drugs Forum, Tel: 0141 221 1175, E-mail: davy@sdf.org.uk The limits of advocacy It is important to recognise the limits of advocacy and be clear about what it cannot achieve. The purpose of advocacy is not: to create a substitute for making services more accessible or to bypass user involvement in the planning and delivery of services to avoid the need to provide person-centred services about making complaints (although advocacy may involve supporting people who want to make a complaint and helping them to do so effectively). Advocacy is often provided to those most in need of safeguarding, who are often least likely to have their needs and rights recognised, but who are also least likely to provide specific instructions or have specific ideas about what they want or need. Consequently there is always the danger of the advocate taking over the process rather than empowering the client to deal with issues themselves. Therefore standards must be in place to ensure that best practice is carried out. For information about standards see Principles and standards in Independent Advocacy organisations and groups (Advocacy 2000, January 2002). Advocacy and befriending services It is important to stress that advocacy is not the same as providing befriending services. The Befriending Network Scotland says the role of a befriender is primarily about social contact and about forming a reliable, trusting relationship, and therefore not about doing practical jobs like driving, shopping or DIY. Befriending offers supportive reliable relationships through volunteer befrienders to people who would otherwise be socially isolated. For more information see www.befriending.co.uk 15
SUMMARY At different stages of the recovery process, an individual drug user may benefit from different types of advocacy. Advocacy is seen as most beneficial when service users are trying to get access to treatment and care options. Relatives and carers of drug users may also benefit from advocacy. It is important to be aware of the limits of advocacy and be clear about what it can and cannot deliver. THINK ABOUT THINK ABOUT THINK ABOUT 16
What Service User Focus Group participants said about advocacy: I have had my Mum and my worker speaking for me and both have been the same. I have got what I wanted, it just depends on who you think can help you best. An advocate needs to be: someone who can empower you, telling you how to put it over and what to say and being there to support you and work things out if they go wrong. An advocate needs: general people skills because you can have all this experience but, see, if you are a bad person, see, if you have a stinking attitude, you are hopeless, people aren t going to relate to you. It was useful for me because I needed stuff sorted with the housing and I saw my worker dealing with it, it was really helpful to see how they went about it, seeing what they said and how they said it, this really gave me a lot of confidence to do it myself, learned a lot from him. About an advocate: they have to be a good listener who will empower the person to speak, giving them the right advice and supporting them through the process. Taking them to their meeting and offering support where needed and if the person gets stuck or flustered then speak for them. As my friend knew what I was going through and knew the doctor he offered to come with me and speak to him. He put it over in a better way from me because he wasn t angry or annoyed with the doctor. The good thing from this was that he understood what I was going through because he had been through it, and I felt that he listened and understood my situation. It was good because I got back on my prescription and I am now doing well. I ve had a support worker give me a hand to do an appeal against the DSS and without her help I would probably have lost the case. She had the right ideas about how to approach it and everything. She wisnae over experienced but she d done enough work or research on how it worked to get a successful outcome. Some of them go to great lengths to help you and actually know what they re doing. 17
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Chapter 3: Provision of advocacy services to drug users Many drug users receive advocacy without being aware that this is the term for the service they are receiving. Drug users receive advocacy from a range of sources and consider knowledge of the subject and good people skills to be key qualities of an effective advocate. Who provides advocacy to drug users? Our evidence suggests that the majority of drug users receive advocacy from service providers with whom they are in contact, e.g. staff within treatment and care services, not from specialist advocacy services. Many drug users (especially those who are not in touch with services) receive advocacy from family members and friends. However, some reported not to have a lot of contact with their families. Some reported that when they make contact with services, staff within these services tend to replace family and friends in providing advocacy. According to our evidence, only a minority of service users currently receive advocacy from independent advocacy agencies. I was a bit f d up right, and wasn t in touch with agencies, then my ma sort of became she took the role of speaking on my behalf. (Service User, EIU focus groups 2004). Both service users and providers felt that, in the case of drug users, staff from treatment and care services were well placed to provide advocacy. Reasons given included: advocacy provided by a drugs worker would maximise a client s potential of staying clean staff within treatment and care services have the best knowledge of drug users service users are often not in a position, and may be reluctant, to approach another service. Getting to know and learning to trust new staff can be a real challenge. Who should provide advocacy to drug users? The majority of service providers (EIU Advocacy Survey 2003) believed independent advocacy to be the most appropriate source of advocacy. However, when asked to comment further, many highlighted a range of potential difficulties with relying on independent agencies to provide advocacy for their clients. They felt that independent advocacy services are often not very well informed about drug misuse issues. They also had concerns that separate independent advocacy services designed specifically for drug users may have a stigma attached to them. There was also a view that, despite the value of independent advocacy services, drug users often feel unable to access them. Some respondents thought advocacy should be a specialist role carried out by formally trained individuals working within treatment and care agencies. Some felt it was not always appropriate for family and friends to provide advocacy because often they were too involved, they may be part of the problem or may promote their own agenda rather than that of their drug-using relative. I would go to someone who knew about what I wanted. If that was a friend that I know could help then that is who I would go to. (Service Users, EIU focus groups 2004). When considering the most appropriate providers of advocacy to drug users in their local area, DAATs and their partners may wish to consider the strengths and weaknesses of different types of advocacy. From the research and consultation evidence we have put together the following table: 19
STRENGTHS Independent Advocates WEAKNESSES Independent Advocates Independent advocates do not need to consider any agenda other than the client s X Many clients will be in contact with a number of services and may be reluctant to tell their story to yet another person Independent advocates can offer a sense of general perspective to clients and help with every aspect of their lives (including those not directly linked to their drug use) They can stay with a client throughout the recovery process and provide an element of stability They can also be available if the client loses contact with a specific drug service They will not be seen as aligned to any specific service or agenda X X X Clients may not want to go through the process of getting to know and learning to trust another professional Independent advocates may not have an in-depth knowledge of drug-specific issues or understand the recovery process Independent advocates who are not used to working with this client group may find building up trusting relationships challenging Treatment and care service providers Treatment and care service providers There will already be a trusting working relationship between staff and clients X Clients may need advocacy with issues that are outside the remit of the service Treatment and care service providers have a good knowledge of the issues faced by this client group and will have experience of dealing with them Staff working in the drug misuse field will have good understanding of the range of services clients need to access and a knowledge of what is available X There may be conflict of interests, for example, if a client requests help with complaining about the service X Accessing advocacy within a treatment service may increase clients stigma, especially when dealing with services where their drug use is not known X Could add to clients dependency on staff and deter them from moving on to other services X When leaving the treatment and care service, clients may also find they lose the support of an advocate Family and Friends Family and Friends Often family and friends provide the only constant support that is available to clients and continue with their support beyond the involvement of services They already know a lot about the condition of clients and have an understanding of their needs Clients trust their family and friends X X X Family members and friends may not be neutral and may be guided by their own agenda rather than that of the client Family and friends can be too involved in clients lives and not be able to appreciate the general picture In some occasions, family and friends may be part of the problem and / or may themselves need help and support Note: EIU has produced this table from the research and consultation evidence. 20
The impact of advocacy Service users felt that the key quality of an advocate is their knowledge about the subject on which they were advocating. Whether the advocate was independent or a member of their family did not seem to matter to them (EIU focus groups 2004). Impact on service users The majority of service users felt that the advocacy they received had a positive impact on their lives. The key factor they highlighted in determining the success of advocacy was the level of competence and knowledge of the person advocating for them. Service users also felt that good advocacy services depended on advocates having good people skills. These include someone who is: Trustworthy someone you can trust and isn t going to tell people Non judgemental someone that wouldn t judge you Good listener good at listening and putting it back a better way Honest they have to be honest and open with you, giving you good advice telling you when you won t get something so as not to build up your hopes Focus group participants also thought that, providing they have the above qualities, exservice users could have a role in providing advocacy. Confusion over the term advocacy I was going through a DLA appeal. So, I went and got myself a worker, an advocate to speak up for me. But I got this worker and I just didn t feel confident with her. She just didn t have a clue what she was doing and she wasn t getting all the information that she needed and I went up and I lost it. (service user EIU focus groups 2004). Service users who participated in the EIU focus groups found the term advocacy confusing. Some participants did not understand the term at all and others had a vague idea of what the term meant. Yet others were confused because they connected the term advocacy with the legal system and the position of an advocate. All participants felt that the confusion over the term advocacy means that drug users would be unlikely to approach services that are advertised as advocacy services. Participants felt that drug users will not know what type of interventions such services provide. Anticipating this confusion, Principles and standards in Independent Advocacy (Advocacy 2000, January 2002) suggests that, when explaining the concept of advocacy to people who might use it, it is important to: not use jargon. use a range of communication techniques (i.e. don t just rely on leaflets). instead of using the word advocacy, say it is about help to talk to people about health issues, money, housing etc. and that it is about having someone on your side. explain the difference between an advocate and other service providers (e.g. drug worker, nurse, GP). explain what advocacy cannot do or cannot help with. 21
use examples that clearly demonstrate how advocacy helped individuals in similar situations. Impact on professionals and service providers Health and social care professionals and service providers may have some concerns about the role of the advocate in relation to their own role. It may be helpful for DAATs/local partners to consider how to realise awareness of the benefits of advocacy both for the individual and the care provider. Effective advocacy can assist with the identification of the individual s needs and inform the care planning process. SUMMARY Evidence suggests that drug users are currently more likely to receive advocacy from treatment and care service providers or family and friends rather than from independent advocates. There are different strengths and weaknesses associated with different providers of advocacy for drug users. Service users felt that, to be effective, advocacy services depend on the advocate having a level of knowledge about the subject and good people skills. The term advocacy can be confusing for service users and many are not sure what it means or the kind of service it refers to. 22
Chapter 4: Advocacy services for young people The Guide to Services for Young People with problematic drug misuse (EIU 2003) identifies the role of DAATs in working to ensure that services uphold children s rights. Advocacy can help uphold the rights of children and young people experiencing problems due to their own substance misuse by supporting them to say what they think and how they feel, encouraging them to be involved in decisions about their lives and by helping them to be heard. Advocacy can also help ensure young people receive the services they need and are entitled to. Evidence / Information Children s rights are about: Being treated as an individual in [their] own right. To have their opinions heard and respected regardless of age. To be kept informed about all decisions relating to them within their capacity of understanding. To have an advocate act for them (Service Provider, Yorkhill Advocacy Research Project, August 2002). How advocacy can help young people Young people who are misusing drugs may also experience a number of other problems, including: disrupted education, behavioural disorders, criminal behaviour, family breakdown or dispute, and physical and psychological harm. Often, for these young people, substance misuse is only one of a number of risk-taking behaviours they are engaged in. Young people may need to access a wide range of specialist and generic services. Advocacy can help to ensure that young people are able to access the services they need. Most of my life it has felt like no one was listening to me. (Young person, ASA 2003). A research project aiming to inform the development of independent advocacy for children and young people in Glasgow (Advocacy Project: Children should be seen and HEARD! Marjorie Gillies, August 2002) found that: children and young people may not recognise that they need the support of an advocate. Nevertheless, those who participated in the research cited instances when an advocate might have empowered them to say what they wanted or to understand information they were given. For more information and a copy of the report contact Marjorie Gillies, 0141 201 9354 or Marjorie.gillies@yorkhill.scot.nhs.uk. The Advocacy Safeguards Agency also conducted a national research study during the summer of 2003 looking at advocacy for children and young people in Scotland. Key findings from the research suggest that young people need advocacy in situations where they feel particularly vulnerable. These situations include: school exclusions; bullying; contact with the police, social workers and the Children s Hearing system; homelessness; using hospital services; for some within their local communities and during transition to college or workplace. For a copy of the report contact David Cameron on 0131 524 9380 or go to www.advocacysafeguards.org. In addition, the young people who participated in the research highlighted the following points as key aspects of advocacy services: Young people found the word advocacy off putting and preferred terms like sticking up for you and someone who s on your side. It was more important to young people that an advocate is a good listener, patient, trustworthy and loyal, than whether or not they were independent. Advocacy is not a good word. It s too posh. It should be called putting your voice forward. (ASA 2003). 23
Many of the young people thought they would be able to relate better to a younger advocate especially someone who has been through similar experiences. However, some felt an older person may be more confident and assertive. Young people wanted an advocate who is clued up and who knows their way round the system. They also wanted an advocate who is open-minded. Young people wanted to be reassured that what they discuss with the advocate would remain confidential, although most said they would not mind their parents knowing they are seeing an advocate. Information / Example Fife s Children s Rights Service is in the process of developing a Children s Rights Strategy. The strategy will comprise four key elements, including: Children s rights advice, information and associated support (including training and awareness raising strategies) Children s participation Advocacy Representation and assistance (including legal and non-legal forms), monitoring and proofing activity. In order to ensure the needs for advocacy of vulnerable children and young people are met Fife s Advocacy Strategy Group (jointly co-ordinated by NHS Fife, Social Work and Barnardo s) are funding an Advocacy Development Worker that will be based within Fife s Children s Rights service. For more information contact Peter Nield, Fife s Children s Rights Co-ordinator, 01592 265294 Children s Rights Officer Aberdeenshire Council has a Children s Rights Officer that works jointly with Social Work and Education services. The role of the Children s Rights Officer is to make sure children and young people know about their rights, and are listened to and treated fairly. The officer ensures that young people placed away from home have access to an independent person as part of an overall strategy to ensure their safety and access to appropriate services. The Children s Rights Officer provides young people with information and advice about their rights; helps young people to represent their views at meetings; listens to and takes seriously what young people say; and helps young people put forward their views about services. The service is aimed at children and young people who have been placed away from home by Social Work or Education services, and young people who have moved on from care, including those with special needs. For more information go to: www.aberdeenshire.gov.uk/web/children.nsf/html 24
Advocacy services for children and young people in Scotland The mapping of advocacy services in Scotland conducted by the Advocacy Safeguard Agency in 2003/4 revealed the following services for children and young people: Who Cares? Scotland provides advocacy for children and young people in care in all but three local authorities throughout Scotland North Ayr and Drumchapel in Glasgow have developed generic children s advocacy and rights projects funded through Social Inclusion Partnerships Adults think we might have an option, but just, it s their option or what they think it s obviously been a while since they d been young. (14 years old, August 2002). There is one independent anti-bullying advocacy project for children and their parents Many voluntary sector children s services provide advocacy on an ad hoc basis to their clients There is only one independent advocacy organisation for children and young people in Scotland SUMMARY Advocacy can help uphold the rights of children and young people experiencing problems due to their own drug misuse. Young people need advocacy in situations where they feel particularly vulnerable, e.g. school exclusion, contact with the police and social work, bullying. Young people find the term advocacy off putting. Young people want their advocate to be clued up. 25
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Chapter 5: Advocacy services in rural and remote areas Developing and accessing advocacy services in rural areas can be difficult. The location of services can be a major barrier. Expensive and limited public transport can make it very difficult for individuals to access services. Lack of childcare provision and limited opening times may also contribute to the difficulties in attending services. In addition, rural areas often have a limited range of specialist treatment and care services. This means that there are fewer treatment and care staff to provide advocacy to substance users and that clients may need to make more use of generic advocacy services. At the same time, problems maintaining anonymity in rural areas may mean substance users would prefer to use generic advocacy services that do not label them. Difficulties in maintaining acceptable levels of confidentiality and possible high levels of stigma can pose a real challenge to service provision. For example, in small communities where everyone knows everyone Information It is often assumed that people living in rural areas would travel to nearby towns to access services. There is some evidence to suggest that this is more likely to happen in dormitory areas, and that a large number of people are less likely to travel to access services. Integrated Care for Drug Users (EIU August 2002). else, matching clients to advocates can become a complex procedure. This problem is made more difficult by the fact that often advocacy services in rural areas attract only a small number of volunteer advocates leaving service providers with a restricted choice when matching advocates to clients. Example A client living in a rural area needed an independent advocate who could deal with the local Health Board, the local school and the local Social Work Department. Attempting to match this client with one of the four volunteer advocates from the local advocacy service became very difficult because: one volunteer was a member of the local Health Council, the other was an employee of the Health Board, another was a parent whose own child was in the same class as the client s child and one volunteer was on holiday. Rural advocacy services Rural advocacy services tend: not to specialise in one particular client group but deal with a range of clients and issues to have to be very flexible in meeting the needs of individual clients (e.g. outreach services for clients with no transport) to be relatively small with one or two paid workers and some volunteers. Anecdotal evidence suggests that individuals living within small and close-knit communities may be cautious about using advocacy services. This is largely because of a reluctance to rock the boat in case they are perceived as trouble makers. Advocacy services may be seen as encouraging clients to complain about other services and generally promote a culture of discontentment with services or the way they are provided. 27
SUMMARY Location and timing of advocacy services is a particular difficulty in rural and remote areas where accessibility is often a problem. There may be a greater role for generic advocacy services. Anonymity and confidentiality are important for clients. 28