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Independent Advocacy: A Guide for Commissioners

Foreword

It is vital that people who, for whatever reason, are unable to put forward their own case are helped to find a voice to represent their interests and their views, and to ensure that they get the services they need.

Advocacy is not a new concept. People do it every day for their children, their elderly or disabled relatives, and for their friends. Concerned individuals or groups do it for people who are particularly vulnerable or undervalued. Advocacy enables people to make informed choices about, and to remain in control of, their own care. It helps people have access to information they need, to understand the options available to them, and to make their views and wishes known. Advocacy is central to the new era of care where the planning and delivery of services is designed from the perspective of the service user.

This Guide for Commissioners complements Advocacy: A Guide to Good Practice, first published in 1997, and is an indication of the Scottish Executive's continued commitment to the provision of locally-based advocacy schemes. Indeed at the Advocacy in 2000 conference in early 2000, Health Boards were challenged to adopt a proactive approach to the provision of advocacy services in their area in partnership with local authorities and other agencies. This Guide offers them and their planning partners advice on how to begin the task of ensuring that independent advocacy is available to all that need this support. We have also funded the employment of a Development Officer to support the local planning partners in this task.

I expect Boards to submit their detailed proposals for the development of locally-based independent advocacy schemes within six months and to have the agreed arrangements implemented within one year of the publication of this Guide.

MALCOLM CHISOLM, MSP
Deputy Minister for Health and Community Care

Summary

This guidance reflects the importance which Scottish Ministers attach to independent advocacy as a way to enable people to make informed choices about, and to remain in control of, their own care. Advocacy helps people have access to information they need, to understand the options open to them, and to make their views and wishes known.

Independent advocacy:

• provides a safeguard for vulnerable adults and children
• empowers people who rely on health and social care services
• strengthens communities by involving ordinary citizens
• provides valuable intelligence and feedback for commissioners
• provides a healthy challenge to the service system.

Some key principles underpin good independent advocacy:

• Advocacy groups should be firmly rooted in, supported by and accountable to a geographical community or a community of interest
• Advocacy groups should be constitutionally and psychologically independent of local and national government
• Advocacy groups can not be providers of a service and advocates for users of that service
• Different approaches to independent advocacy are needed; there is no one best model
• Advocacy groups should maintain a clear and coherent focus of effort
• Advocacy groups should undergo regular independent evaluation of their work, and commissioners should provide financial support for this.

Health Boards and local authorities in Scotland are expected to adopt a proactive approach to commissioning advocacy. The commissioning task is challenging because:

• there are currently major gaps in people's access to independent advocacy
• money for new projects is limited
• a variety of models and approaches is needed
• advocacy crosses different 'care groups', and it is hard to gain a consensus on priorities
• independent advocacy groups need to be nurtured, but not controlled.

This guidance provides practical suggestions for commissioners on these issues:

• determining the local priorities for advocacy
• investing in advocacy through grants and contracts
• providing initial and ongoing assistance to advocacy groups
• measuring the effectiveness of advocacy
• learning from advocacy by changing policy and practice.

In implementing this guidance, local authorities and Health Boards are expected to:

• Have a senior named person who takes a lead role on advocacy across all client groups
• Pool their expenditure on independent advocacy to create a single joint budget at local authority (or other suitable) level
• Commit this joint budget at least three years ahead
• Set up advocacy planning teams which involve a diverse group of stakeholders, and work with them to develop a three year plan for advocacy
• Provide long-term core funding for advocacy projects following independent evaluation
• Invest in local capacity to provide advocacy, and encourage innovative approaches.

Introduction to this guidance

Independent advocacy is a crucial element in achieving social justice. It is a way to ensure that everyone matters and everyone is heard - including people who are at risk of exclusion and people who have particular difficulties in making their views known.

Recent legislation and policy guidance consistently emphasises the importance of independent advocacy:

"Some patients have particular needs and require additional help to express their concerns, and the Government have recognised the need to develop independent advocacy for them."

Designed to Care, 1997

"Agencies should be supporting and involving people with mental health problems in the development of...independent collective and individual advocacy"

A shared approach: developing adult mental health services. Accounts Commission 1999

"We will ask each local authority to show in its community care plans for 1999 and onwards how it has improved decision-making by allowing people who use services to have their say in decision-making."

Modernising Community Care: An Action Plan 1998

"The (Children's Services Development) Fund is intended to lever change in 3 key areas for development ....

(2) greater advocacy services for children looked after by local authorities"

Modernising Social Work Services in Scotland 1999

"We are impressed by the role of advocacy and would like to see it developed. In situations where there may be some conflict between the wishes and needs of the client, their family or carers, and those arranging care, the availability of an independent intermediary to act for and on behalf of the older person or others concerned about an older person can be extremely helpful.....We recommend that such a role of representation should be developed locally, with backing from central government."

With respect to old age: a report by the Royal Commission on Long Term Care 1999

"Codes of practice to be produced under the Adults with Incapacity (Scotland) Act 2000 will refer specifically to the potential value of advocacy in ensuring that those carrying out functions under the Act take into account the wishes and feelings of adults with incapacity. It will also be important that no-one is assessed as incapable of acting for themselves simply because they do not have the assistance they require to help them to express themselves. Advocacy should be considered as one possible form of such assistance."

Civil Law Division, Scottish Executive

In 1997 the Scottish Office and the Scottish Health Advisory Service published 'Advocacy: A Guide to Good Practice'. Since then, there has been a gradual but significant increase in the provision of independent advocacy. However, most areas still do not have clear joined-up plans for developing and sustaining effective independent advocacy.

Many advocacy organisations are still funded on an annual basis and spend a significant proportion of their time and energy piecing together enough funding to stay afloat. Opportunities to access advocacy remain limited for people who live in their own homes and people in other residential settings.

The challenge for commissioners

Commissioners have a key role in matching resources to needs, and ensuring that as far as possible public money for health and social services is being used in the right way and on the right things. This is a difficult and challenging role. Commissioners have to:

• work with others to develop a credible analysis of 'need' which is as far as possible independent of the current pattern of service provision
• scan the environment for changing trends and for emerging innovations in service delivery
• balance the budget share of different providers to ensure choice and diversity as well as economies of scale and the development of specialist expertise
• provide information and incentives to shape providers' investment and disinvestment decisions
• monitor quality and value for money, and work with providers to improve quality over time.

Commissioning anything is difficult because there is hardly ever enough money and hardly ever enough time, and never enough time and money together.

Commissioning independent advocacy is particularly difficult in at least four ways.

First, advocacy is not about a particular 'client group'. This makes commissioning advocacy a challenge. We have to think and work outside the boxes. Second, advocacy groups must remain psychologically independent of commissioners if they are to be effective -so there should always be a respectful distance in the relationship. Third, advocacy groups are typically small, managerially and financially fragile - so they need more support and handholding than large service providers. Fourth, advocacy groups are by nature partial, so asking them to see the bigger picture is asking a lot.

Encouraging independence without anarchy, consultation without incorporation, co-operation without hierarchy, coverage without command planning, accountability without loss of autonomy -these all need a lightness of touch from commissioners.

This guidance follows up 'Advocacy: A Guide to Good Practice' with some practical advice for commissioners. It is published in parallel with a 'Key Ideas on Independent Advocacy' from Advocacy 2000 which provides more detail on the management of advocacy projects.

This guidance does not set national priorities for advocacy. Instead, it advises commissioners on developing local priorities.

This guidance has been developed by a small group of commissioners from health boards and local authorities with assistance from SHS and Advocacy 2000. The first draft of the guidance was circulated widely and over forty sets of written comments were received. The draft guidance was also discussed at three regional seminars involving more than ninety people during January 2000.

The route map for commissioning advocacy

Commissioners may want to start at any point in this map. Investing in advocacy focuses on how to decide on priorities given limited time and resources. Supporting advocacy looks at the practical and moral support commissioners can give to independent advocacy agencies. Measuring the impact of advocacy is a good place to start for commissioners seeking evidence of added value. Learning from advocacy shows how commissioners can use the intelligence from advocacy groups to inform wider service development issues.

Each of these stages links back to the central question of values - what advocacy is and why we think it matters.

Section 1

What Advocacy is, and Why it Matters

1.1 WHAT IS ADVOCACY?

Advocacy is about standing up for and sticking with a person or a group, taking their side, helping them to get their point across. Advocacy adds weight to people's views, concerns, rights and aspirations.

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 own views and make their own decisions.

Advocacy is a part of everyday life. But sometimes when people are at greatest risk of poor treatment and when they most need to have someone on their side, they do not have anyone available. Some people need advocacy on a long-term basis. Other people only need advocacy during a particularly difficult time. For example, someone may be well able to speak up for herself in everyday life, but may feel vulnerable and powerless when undergoing treatment in hospital.

Advocacy schemes are designed to connect people who need advocacy with the advocacy they need. Broadly speaking there are three complementary approaches to independent advocacy:

Collective advocacy

People in similar situations come together - with or without external support - to make common cause, draw strength from each other and get their collective voices heard.

Independent professional advocacy

An agency with expert knowledge of the legal, health or welfare system uses this expertise to represent the person's interests and to assist the person to get their point across more effectively. This service may be provided by independent paid professional staff or by volunteers with relevant training and/or experience.

Citizen advocacy
An ordinary unpaid citizen
gets to meet a person who is in a vulnerable situation
seeks to understand their views and concerns
does what he/she can
for as long as it takes (for life if necessary)
to ensure they are treated well and
to help them get what they need and want.

Some advocacy agencies combine different approaches in their work.

All of these forms of advocacy have natural analogies in the lives of well-connected people. Well-connected people have clubs, unions, professional associations to represent their collective interests. Well-connected people know people who know people who can represent them in their dealings with the system - and if they do not know anyone they can hire someone. Well-connected people have people in their lives who stick by them, who will be there for them and stand up for them in times of trouble.

All these forms of advocacy are important and complementary. There is no 'best' or 'purest' form of advocacy. Strong collective advocacy organisations are an essential part of a healthy democratic society and make a unique contribution to changing law and policy. Independent professional advocacy is an essential part of a fair system; it levels up the scales for people who are disadvantaged and vulnerable. Citizen advocacy is an essential part of a healthy community; it introduces people who would otherwise not meet and it strengthens the social fabric by reconnecting people who are disconnected.

Independent advocacy is no more than making sure that people who are at risk of being excluded are not also on their own. As far as possible, advocacy helps people get their own point across, speak up for themselves, get organised. But sometimes some people just need someone else on their side.

Advocacy has fuzzy edges; some organisations such as Centres for Independent Living, women's health projects or self-help groups may undertake some formal advocacy as part of their wider remit.

The work of many other agencies includes elements of independent advocacy - for example, welfare rights teams, citizens advice bureaux, housing advice centres, volunteer befriending schemes - but these agencies would not typically be seen as part of core advocacy activity.

There is an important distinction between consultation and advocacy. Asking disabled people to contribute to the community care plan or to comment on the quality of the service they receive is worthwhile, but it is not advocacy. Independent advocacy groups have their own identity, their own agenda, and their own place to stand, independent of the local authority or Health Board.

1.2 WHY DO PEOPLE NEED INDEPENDENT ADVOCACY?

Some people in society are much more likely than others to be treated badly, either because of other people's prejudice or because of their own vulnerability, or both.

The factors which put people at risk include age (both children and old people), physical frailty, gender, ethnic origin, sexuality, impairment (cognitive, psychological, motor, sensory), reputation, dislocation, abuse, family breakdown and social isolation. Some people have to rely on powerful service systems for help with all aspects of their life - housing, personal assistance, decision-making, income, occupation, mobility. Particularly when people have been immersed in the service system since childhood, and when they have no strong allies outside, the operations of the service system are life-defining. For some people, their family is also part of the problem. Service systems are not and will never be perfect. From the point of view of an individual, they take a long time to change.

Individuals who rely on these service systems often have limited personal power and resources to argue their case. This is especially true for people who do not use words to communicate, for children and young people, for people who cannot read or write in the language of the system, for people who have a negative reputation within the system, for people who are physically frail and for people who are regarded as incapable of making decisions.

If these individuals do not have well-motivated and capable family and friends to speak up for them, they are at risk of poor treatment and of not getting what they need. They may not have their own views, wishes and feelings taken into account properly, as is their right. They are also the least likely people independently to exercise their right to make a complaint.

Even capable and positive family and friends may still be ignored because other people's prejudice and dismissive attitude extends to these families and friends.

Even where people have rights in law - for example to a community care assessment or to a second opinion - they are often unaware of their rights. While policies may be in place - for example about medication being regularly reviewed, or about people being given information - these are not always followed when professional staff do not see them as important.

Advocacy is not a sticking plaster to compensate for poor service quality. Health and social services have a duty to listen and respond to all the people they serve, and to work to high standards. Commissioning advocacy is as well as, not instead of, improving services.

However, small neglects and mistakes by service systems can have huge consequences for the individual. The disparity between the size and power of the service system and the powerlessness of the people most at risk within this system means that further safeguards are needed to reinforce the general protections provided to consumers and to citizens.

1.3 HOW DOES ADVOCACY COMPLEMENT EXISTING SAFEGUARDS?

There are already several formal safeguards in place within the human service system which recognise that vulnerable individuals are often not in a position to hire a lawyer, make a complaint, or vote with their feet:

• Local authorities have arms' length inspection units to visit and scrutinise residential homes while health boards inspect nursing homes. These will shortly be merged to become part of an independent national agency - the Scottish Commission for the Regulation of Care. The new Commission will use lay inspectors alongside professional inspection teams - and this will provide an additional independent perspective and safeguard.

• The Scottish Health Advisory Service regularly evaluates hospital and community health services for vulnerable groups.

• Local Health Councils are independent agencies with authority to monitor local health services and take up any concerns raised by members of the public.

• Some local authorities fund Children's Rights Officers and Who Cares Scotland to provide independent advocacy for looked-after children.

• The Mental Welfare Commission regularly reviews the treatment of people detained under the Mental Health Acts, and takes up individual cases of alleged poor treatment.

• The new office of the Public Guardian to be set up under the Adults with Incapacity (Scotland) Act will oversee arrangements where a family member, friend or professional is authorised to act on behalf of an individual deemed incapable of making his or her own decisions.

Advocacy complements these formal safeguards in several ways. While most of these formal safeguards are at the organisational rather than the individual level, advocacy starts from the perspective of the individual.

Advocates apply a different measure. They are not asking 'is this service complying with standards and procedures?', instead they are asking 'what is life like for this person (or group)?'. There is a large gap between services complying to standards and people who rely on those services having a decent quality of life.

Advocates have a different sort of authority. Their authority comes not from their statutory powers but from their conscious alignment with the interests of a marginalised group or individual.

Advocates can reach the people the formal systems miss. They focus on the people who have no-one else on their side.

Sometimes people are almost surrounded by professionals and agencies, but still alone. Or they have fallen out of the system altogether and are isolated from other sources of help. Sometimes people have become compliant and have come to expect so little that neither they nor anyone else is articulating their concerns.

Some people need particular help to communicate their wishes, needs and feelings so that these may be taken into account when legal decisions are made on their behalf, as is their statutory right.

Advocates can work continuously with people on a wide range of related matters. Formal agencies can apply pressure or sanctions in respect of a specific issue where they have competence at a specific time. Advocacy agencies can stick with people over time and see people's life as a whole rather than as a series of 'issues'.

Advocacy is not just about the service system. It may be that the service system is doing as much as can be expected, but that someone is nevertheless isolated, marginalised or even victimised within a community. Advocates look for a way to stand alongside that person.

1.4 WHY SHOULD ADVOCACY BE INDEPENDENT?

Nurses, social workers, care staff, doctors, teachers and other professionals look out for and speak up for the people they serve. It's their job, it's part of their professional code of conduct, it's part of being a decent human being. But they aren't, and can't be independent.

But to be on someone's side, advocates have to be structurally and psychologically independent of the service system. Independent advocates - whether paid or unpaid - can be entirely clear that their primary loyalty and accountability is to the people who need advocates, not to the agencies providing health and social services, and not to the government. Independence doesn't mean being right all the time. Independent advocates are no more virtuous than service providers. They just stand in a different place and see things from a different perspective.

Independent advocates do not have the same conflicts of interest as professional workers who are often expected to make judgements about who is most deserving or most eligible for a service. Because advocates do not have this sort of power over people and do not control access to resources they are in a better position to see things from the person's point of view rather than the system's point of view. They can focus on representing the interests and wishes of the people who need an advocate, and be clear that this is their role.

Professional workers who advocate strongly on behalf of a particular individual or group may be seen as acting unprofessionally or as being critical of their employing organisation. This entails personal risks, and can also put the professional worker in a situation where their views on this and other issues are discounted _ the worker may be seen as having favourites, or having 'a bee in her bonnet'.

Psychological independence - independence of mind - is even more important than structural or financial independence. Some independent agencies are funded in part or wholly by statutory agencies and therefore have a responsibility to account to their funders for how they are spending the money.

But independent-minded advocates do not ask the funders for permission to disagree with them. Instead, they challenge agency policy and practice where these are compromising the well-being of the people they represent. They do not expect to be popular with everyone, but they do seek to ensure they are respected for the quality and integrity of their work.

Good advocacy agencies do not seek confrontation but they maintain the principle of primary accountability to the people they serve, even if this means being threatened with or even faced with withdrawal of funding. Good advocacy agencies are prepared to start back round the kitchen table if necessary.

Good commissioners welcome this spirit of independence, even if it makes their life harder.

1.5 WHAT DO HEALTH BOARDS AND LOCAL AUTHORITIES GET FROM INDEPENDENT ADVOCACY?

Better outcomes for people

Advocacy makes a difference to what happens to people. It leads to better decisions about treatment and services. People feel better about themselves and their situation. People get out of places where they are unhappy, get included in places where they want to be.

Intelligence and feedback

Advocacy schemes can provide an alternative source of constructive intelligence and feedback about how well services are meeting the needs of the most vulnerable groups, and inform future needs and priorities while protecting the confidentiality of individuals. This can assist the systems of clinical governance within NHS Trusts, and of best value within local authorities.

As well as highlighting quality and problems in current service provision, independent advocacy can inform joint planning for the future (see section 5).

Added value

A relatively small investment in independent advocacy can yield significant results. Advocacy agencies engage the skills and commitment of ordinary members of the public. They empower people who are being ignored, giving people the support and information they need to make their own decisions and take more control of their own life.

Advocacy schemes also have an interest in avoiding dependence on a single agency: so core funding from statutory sources is usually extended through other grants and fundraising activity.

Constructive challenge to service providers

Advocacy schemes provide a constant challenge to service providers to improve what they do. This challenge may be at least as effective in achieving higher quality as the more formal processes of standard-setting, inspection and regulation.

Keeping the focus on people who are most at risk

By concentrating on people who are most likely to fall through the net, independent advocacy helps the formal service system to improve the quality of what is provided for people who are hardest to serve. This is the acid test for any service system, and independent advocacy helps keep this on the agenda.

Designing user-focused services

Advocacy supports the development of person-centred services because it is involved with people whose circumstances do not readily fit standard arrangements. By testing the limitations of current services, advocacy can help professionals to redesign and refine the system so that it works better for everyone - including the exceptional people.

1.6 HOW DOES ADVOCACY FIT WITH THE WIDER POLICY CONTEXT FOR HEALTH AND WELFARE?

Independent advocacy contributes to several policy goals for health and welfare.

Health improvement

Health Boards and local authorities have a general duty to promote health and welfare as well as to provide specific services. Empowerment is an essential ingredient in efforts to improve the health of excluded communities.

Treatment is also more effective when people are well-informed, confident and have the support of friends. Independent advocacy can build up people's confidence and provide personal support to people who would otherwise be isolated.

Equity

Independent advocacy intervenes on behalf of individuals and groups who are most likely to get poor quality services.

Independent advocacy advances the cause of whole sectors of the population who are discriminated against in access to services. So advocacy groups representing older people, disabled people, people from ethnic minorities highlight inequities in transport, general health services, housing, education and other areas.

Some people within these groups are further disadvantaged by having a number of different labels. For example people who have both a learning disability and a mental health problem often end up living in more institutional settings than other disabled people. Independent advocacy is one way to secure greater equality in the options available to people.

Social inclusion

People who have the support of advocates and advocacy groups are more likely to avoid institutional care and to develop and maintain personal connections in the community. By creating and sustaining connections between people in marginalised groups and the wider community, independent advocacy helps to strengthen the social fabric in places where it is weak.

Independent advocacy strengthens the capacity of people at risk of exclusion to develop their own solutions and to be active participants in tackling issues.

Human Rights Act (1998)

This legislation enables individuals to pursue an action under the European Convention on Human Rights within the Scottish legal system. Independent advocacy can support individuals in this process.

Disability Rights Commission

The Disability Rights Commission will assist individuals to uphold their rights under the Disability Discrimination Act (1995). Again, independent advocacy can support individuals in this process.

Promoting the welfare of adults with incapacity

Executive codes of practice and guidance under this legislation will make it clear that advocacy is to be considered as one of the possible means of assisting adults with incapacity to communicate their views, wishes and feelings.

Responsiveness and partnership

Achieving real partnership between those who use and those who provide services involves a change in the culture of service provision. The traditional model of 'professionals know best' is increasingly being questioned by those who want to see a more open dialogue and more equal partnership.

Independent advocacy is one of several complementary strategies for achieving this cultural change and for restoring to individuals and communities some of their authority to define their own priorities and tackle their own problems. Other strategies include:

• Accessible information for patients/service users

In the traditional professional approach, information is seen as something to be given to people if time allows, without too much thought about whether people have understood what they have been told.

In a more empowering approach, information exchange is seen as a central part of the process. Professionals take more care to listen to what patients and service users have to say. Patients and service users help to produce clear accessible information and are expected and encouraged to use this information as a starting-point to ask more questions.

• Carer support and education

Alongside providing better information for patients and service users, health boards and local authorities have started to invest in the capacity of families, partners and other carers. Giving carers practical and moral support as well as access to information, advice and education increases their ability to work in partnership with the formal service system.

• Public involvement

Health Boards and local authorities are seeking to ensure that their decisions and priorities take proper account of public perceptions of what is important - and that the public as far as possible understand why certain decisions have been made.

This process of dialogue can take many different forms, including citizens juries, health panels, consultation meetings, surveys and focus groups.

Better Government for Older People is a good example of a national initiative which has taken a cross-cutting approach to improving the responsiveness of government at all levels to older people and to increasing older people's participation in society.

• Volunteers

Volunteers who have a particular health condition can provide both encouragement and 'expert' information from their unique perspective. This may make as great a contribution to a person's health and well-being as the formal health and social services.

• Lay involvement in inspection

Involving ordinary members of the public as well as service users and carers in inspection teams makes use of people's different perspectives as citizens and consumers and gives them a recognised role in monitoring and improving publicly-funded services.

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