Introduction

In this chapter we describe what advocates do and discuss what we can learn from their experience. This and the next two chapters are the ‘engine room’ at the heart of our book, showing the work that has been launched as a result of the reforms traced in previous chapters and posing questions to be discussed in those that follow.

Advocates – paid staff and a few volunteers – brought the cases we describe to small meetings where they discussed them with their colleagues. With one or two exceptions these advocates all worked for the same Scottish voluntary agency. Each agency has its unique character, depending on its origins, the people who now work for it and the needs of those whom they serve. So none of them is typical of the whole network. But we are confident that the people working for other agencies of this sort will be familiar with the kinds of stories we tell and the dilemmas they pose.

Advocates choosing cases to present at these meetings were asked to bear in mind the readers for whom we are writing – particularly people who may want to become advocates, those who may have to deal with advocates in the course of other work and others preparing to enter these fields. That meant the cases presented should be real, not imaginary. They should be cases that pose interesting questions – questions that advocates find helpful to discuss with their colleagues. We were not trying to produce a typical cross-section of our work. Some of the cases have successful outcomes, but we did not want to present a succession of ‘George and Dragon’ stories – cases in which gallant advocates rescue fair maidens from dragon consultants, social workers and hostel wardens. The chapter is neither a research report nor an advertisement for advocacy. We hope it offers realistic, interesting education.

It was the responsibility of each advocate to camouflage their cases with small changes in the story – sufficient to make them difficult to identify but not so great that essential features of the story would be lost or distorted. That is why we have not attached the names of advocates or their clients to individual cases and why we do not name the agencies, hospitals or local authorities involved.

Introduction

The agency whose advocates provided most of the examples discussed in the last three chapters is typical of Scotland's advocacy services in relying on volunteers to do a lot of its work. Four of the clients described in earlier chapters were represented by volunteers. Some volunteers join the paid staff for temporary spells to fill gaps in the service that arise when paid workers are on leave or off sick and some of them move into paid jobs when the agency can recruit more staff. Meanwhile, some paid staff work as volunteers for other agencies. So there is no clear-cut distinction between the two.

Much of the advocacy already going on in Scotland before this service was set up by the Mental Health Act of 2003 had always been done by volunteers. The new service could not have got going so quickly without their help. Moreover, in remote and sparsely populated places – on islands, for example, where there may be no more than one or two people a year asking for an advocate's help – it will always be difficult to offer a service provided by paid staff. It is much better to train and support local volunteers. We believe there are more reasons why volunteers should always play a large part in our work – reasons that will become clear later in this chapter. Thus the service cannot be properly described without explaining how these volunteers are recruited, trained and supported in their work. As we explore these things we will find that they pose larger questions about a society's capacity to respond to the needs of its most vulnerable citizens.

How we made a study

The agency providing the evidence for this Chapter had, by the year 2007, trained more than 400 people in short courses, each lasting for about half a day every week for five or six weeks. These courses, taught by the agency's more experienced advocates, had been offered over the previous eight years in seven different places scattered across its large territory. (To drive from one end of it to the other takes about three hours.)

The problem

Cases discussed in previous chapters show that advocates will sometimes come up against public services which, despite the advocates’ best efforts, completely fail to give their clients the help they are entitled to expect. That may be because they have run out of money, because they are badly managed, because they are hostile to the client, because they have chosen to focus on other priorities or for other reasons. It is unfair to advocates, and useless for their clients, to send them out to ask for things we know will be refused. But advocates would be failing in their duty if they accepted bad services without trying to make them better. So what should they do?

There can be no single answer to that question – what can be done will depend on local circumstances. But this chapter may help people who encounter such roadblocks to formulate a policy for dealing with them. A policy of some sort will certainly be needed.

Advocates may, in their own time, be active in all sorts of causes. But the agencies they work with have to accept that they cannot be all-out campaigners – constantly writing letters to the press, seeking the help of politicians and staging demonstrations in the street. The authorities paying for their work would be entitled to say: “We pay you to advocate for your clients; not to light fires under us.” More important still, they would find their campaigns sometimes divide the clients for whom they claim to speak. Some parents of children with additional educational needs passionately believe their youngsters should go to schools outside the mainstream. Others believe, equally passionately, they should go to mainstream schools. Some patients would resist electro-convulsive therapy at all costs. Others find it helpful. Advocacy agencies cannot campaign for both. So what else should they do?

Principles and practice

First, some guiding principles. We should start with the users of our services, find out what they want and help them to campaign for those things when they wish to do so. We speak for them and for no one else. If we do get involved in protests we should involve our clients, their friends and families in any way we can.

Questions posed

The story we have told thus far is typical of the way a social reform takes shape. First there are economic and social changes: in this case, labour scarcities which make hospital and residential care more expensive, new drugs which make them less necessary, more jobs, more subsidised housing and more generous social benefits to help sick and disabled people survive in the community. The same things were happening in every western country. In most of them the numbers in mental hospitals peaked between 1965 and 1975. In Scotland there has been a dramatic reduction since then in the numbers of patients in these hospitals, but slightly more are entering them – most of them only for short periods. Difficult decisions had to be made about the small minority of these patients who had to be treated under compulsion, whether in hospitals or in the community. These decisions were taken by sheriffs’ courts, which dealt with piles of papers and rarely saw the patients themselves.

Thus economic and social changes create new problems but also offer hope for better solutions: particularly, in this case, better care in the community for all sorts of people who no longer have to be confined in hospitals.

Also playing a part in the story were social and political changes, such as the growth of an increasingly well-informed and litigious population, more inclined to question authority. Complaints about health care reaching the UK's General Medical Council numbered 1,087 in the year 1991/92. Thirteen years later, in 2004/05, they had risen more than fourfold to 4,452. A growing array of increasingly confident voluntary bodies had grown up to speak for various groups with special needs. Meanwhile, the whole idea of human rights was spreading, and powerful movements were demanding equal rights for women, for minority ethnic groups, for gays and lesbians and for others.

In Scotland, as elsewhere, groups speaking for people with mental illnesses or learning disabilities – together we will call them mental disorders – came fairly late in the growing queue of those demanding a response from the state to their needs and rights: late and with less political clout.

Introduction

We began this book by asking where advocacy came from. We end by asking where it's going to. As Yogi Berra, baseball coach and coiner of immortal phrases, once said: “You gotta be very careful if you don't know where you’re going, because you might not get there”.

People who know a lot about advocacy give two different answers to this question about its future. There are those – often inspired to play a part in the project by their own experience as users of the mental health services – who hope advocacy will reach more of the people with mental disorders and do more for them. Advocates will work more actively with groups of patients as well as with individuals, they will reach out to people in need of help who are getting no services at all, and will gain greater credibility with staff of the health and social services. These people want to ‘deepen’ the existing service.

Meanwhile there are those – often playing leading roles in the present advocacy services – who expect them to help growing numbers of clients with a growing variety of needs. That is already happening in the more effective parts of the service. As we have shown, an advocate who has helped a confused older lady may be asked for help by her neighbour who is mentally spry but physically disabled. Meanwhile, her agency's manager may be asked by a local authority to extend advocacy to new groups of clients – work for which the council is willing to pay. Neither finds it easy to refuse. These people are prepared to ‘broaden’ the service.

To deepen or broaden? It is our view that we should, cautiously, do both. But that's much too simple an answer. We are more likely to get our priorities right if we start by recalling where the service came from and consider how it meshes with other strategies for achieving some of the same things. That may enable us to clarify longer-term aims. But aims cannot be derived from facts alone. They have to be rooted in moral foundations of some sort and a vision of the society we are trying to create. Some readers will reject the vision we offer and the policies it would call for. We hope we may provoke and inspire them to formulate a vision of their own that they find more convincing.

Why should advocacy be evaluated?

Every public service should be evaluated from time to time to make sure it is doing its job properly. But those paid by their fellow citizens to act as advocates for people who may be very frail and engaged in conflicts with powerful authorities have a special duty to show that they are doing their best to serve their clients in an independent, well-informed and skilful way, without conflicting interests. That duty weighs particularly heavily on them in Scotland where the agencies they work for usually have a monopoly of reasonably secure public funding for this kind of work in the territory they cover. Although their contracts could be transferred to other advocacy agencies at some rather distant point in the future, they are not exposed to the daily discipline of competing for customers in a market place. These are privileges that most voluntary agencies can only dream of.

People working in this field in England and Wales and in the US have prepared ‘charters’ and long lists of tests that advocacy agencies should pass to show they maintain proper ‘quality standards’. They can afford to be rigorous because advocacy is growing slowly – usually for particular groups of clients in particular areas. Meanwhile the spokesmen of government, offering tempting hopes of more secure funding at some point in the future, have pressed advocates to organise training courses leading to accreditation – accreditation that would give successful candidates membership of a professional institute that would assure the world of their competence; accreditation that could also be withdrawn if they failed to maintain the proper standards. This has long been the route taken by public service professions – doctors, midwives, social workers and many others – to gain recognition and a place on the public payroll. Some advocates hope eventually to follow their example. Others have resisted that idea, arguing that advocates should not try to become a profession of that kind. We will discuss these arguments at the end of this chapter.

Scotland's way – so far

When the new Scottish government set up an advocacy service for people with mental health disorders under the 2003 Act, it did this by requiring local social work and health authorities to commission voluntary agencies to provide the service and get it up and running by October 2005.

To understand advocacy properly – or any other new development in public policy – we should first ask: where did it come from, who created it and what were they trying to achieve? These are historical questions and some readers, who share Henry Ford's view that “history is bunk”, may prefer to skip to Chapter Three in which we start explaining what advocates do. Others, realising that advocates help people to speak with greater confidence to power, may want to think more carefully first about the workings of power in our society. That is what this chapter is about. I start with a story from nearly a hundred years ago.

Rule of the gentry

Soon after the First World War a young doctor who had just completed his training to be a Medical Officer of Health (MHO) applied for his first job – to be MOH for a rural district in Kent. Called for interview, he was asked one question only: “Do you hunt?” It happened that he could answer “Yes” to that question and he was promptly appointed. (He told me all this 25 years later.)

Months later, young Dr Metcalfe Brown decided he had to close down the local all-age school, which was plainly unsafe for human use. He was summoned at once to the Hall – home of the local lord of the manor – where the man himself, who was also chairman of his Public Health Committee, boomed at him as he approached: “We only appointed you because you said you would hunt. You’ve never been with the hounds. And now you want to close my school!” And it was, in a sense, “his” school because, long before, his family had built it.

This must have been a moment when a junior medical officer gratefully recalled that the Victorian legislators who created his service had foreseen this kind of situation. They wrote into their law that those holding the post of Medical Officer of Health could only be sacked with the approval of the Minister in London. Their work would inevitably bring them into conflict from time to time with local landlords, industrialists and other powerful people. No other public official had this protection. It made the MOH the senior local government officer, after the Town Clerk who was the lawyer we would now probably call Chief Executive.

This book is about advocacy – particularly, but not only, for people who have learning disabilities or mental health difficulties. The practical experience we will draw on comes mainly from Scotland where new and important things have been happening in this field. Here are two examples of the work we will be writing about.

The first is summed up in a big book – a Personal Care Plan, or ‘PCP’ in the jargon of social work and community nursing. Prepared by an advocate, with help from colleagues in other services, this book is packed with words, pictures, medical prescriptions, names and addresses. It speaks for a young woman – let's call her Sandra – in her mid-twenties.

This book was inspired by the Scottish service that provides advocacy to help people with mental health or learning difficulties. Advocacy for these and other groups began earlier in other countries of the UK, but nowhere else is there the free and independent nationwide service that is to be found in Scotland. When I first got involved, staff of the agency I joined asked where they could find opportunities for further training and professional development. Few were available. No surprise there: the academy always lags about a decade behind new developments in the field because their teachers need a shelf of books to read before they can offer a course, and it takes time to do the research and writing that creates this literature.

So we said, “Let's write our own book”. We worked on it in small meetings of advocates held in various parts of the territory our agency serves: a territory including old industrial towns, comfortable suburbs, and smaller communities scattered among mountains, lochs and islands; a territory with a population of nearly 200,000 people and a coastline longer than the coast of France. Very Scottish.

Central among the readers for whom we have written the book are people working as advocates or preparing to do so in Scotland or elsewhere. We hope our book will also be helpful to users of the mental health services, to those who care for them, the professionals who try to help them, and anyone interested in the broader development of the health and social services.

Our advocates brought anonymous but real cases to discuss with their colleagues at our meetings. To these we added a few others from colleagues working elsewhere in the same cause. I brought draft chapters, which were freely criticised and, in 18 months we created this book. We also sought the help of others who are expert in this field and asked some of them to comment on the whole draft or on particular chapters of it.

We could not have written the book without the help of our clients. Some of them wrote their own stories for us. Others gave their advocates permission to do this for them. We are grateful to them all. To protect confidentiality we have disguised these stories with small changes that preserve their essential truths.

Introduction

Most of the advocacy funded by the state is always likely to be focused on individuals dealing with one-off problems. But collective advocacy by groups of service users must continue alongside this work.

Individual advocacy can help people cope a bit better with the world they live in. But it never reaches some of those who most need this help. And it may too easily reinforce the assumption – encouraged by much government policy – that each of us has to fight our own corner in the public services market place to get the best deal we can in competition with every other ‘customer’. It is only when people who share similar experiences of the public services get together that they can start thinking seriously about changes that may be needed and pressing for action to bring those changes about. As voters and taxpayers speaking for many others whose expertise has been gained from experience of these services, they can in time wield considerable influence. Then things can be improved for everyone – including those who have never met an advocate.

Groups form for all sorts of good reasons – therapeutic, educational, or simply as supportive clubs of friends. This chapter deals with groups that help their members and others like themselves to get the help and treatment they should be entitled to and to bring about improvements in the services they all depend on. While they may do other things too, it is their advocacy we shall focus on, relying on Scottish examples because there is much innovative work of this kind going on here. We describe groups known to us that are doing interesting things, without claiming that these give a comprehensive or typical picture of what is happening in this country.

People in these groups are embedded in various ways in the communities from which their members are drawn. That community may be the staff and patients in a hospital, or just one hospital ward; they may be the people using a day centre, or anyone with mental health or learning difficulties who lives in a particular neighbourhood or city. To bring about change the group will have to influence other people in these communities – doctors, health service managers, politicians and the various ‘publics’ to which these people respond.

In this chapter we deal with questions that pose dilemmas for advocates – the kinds of dilemmas that it may be helpful to talk over with colleagues. In a book that will, we hope, be read by people preparing to work in this field it is important to present such dilemmas – not just the easy victories. Our discussion of each is designed to help the reader think about the puzzles involved, not to provide authoritative solutions to them. Dilemmas, by definition, do not have clear-cut solutions that everyone will agree about. Meanwhile, readers should bear in mind that the cases discussed here are not a typical cross-section of advocacy work. They are meant to be rather difficult, which also means they do not show the welfare state at its best.

People with fantasies and ‘mad’ ideas

Advocates have to listen with respect to their clients’ stories and concerns. They know they are dealing with people who may have a lot of fantasy in their lives. But this is their reality and, even if some of it is fantasy, this may be what keeps them going in bad times. This was recognised by the psychiatrist in the play Equus who envied the passion of the boy, his very disturbed patient, who had a love affair with the great horses in the stable where he worked – a love affair that gave to his life a meaning that was lacking in the psychiatrist's own life. But what if fantasy leads in destructive directions – as it did in terrifying fashion in that play – or simply into fruitless and frustrating dead ends?

How about a man who sought an advocate's help because, living on meagre social benefits, he was determined to buy a house in Spain? The advocate will have to decide when a comforting dream about a castle in Spain reaches a point where it becomes necessary to confront his client with reality. Just to collude in a fantasy is not a respectful way to treat people.

Another advocate was asked to help a young man who, though plainly unable to handle a car, was obsessed with the idea of driving a formula one racer, and exhausted everyone around him by mimicking the sound of roaring engines all day.