Involving service users
and carers in local services

Guidelines for social services departments and others

These guidelines grew out of a project in one Surrey locality which found ways of working more closely with users and carers and developed a training model to assist this. The guidelines will be useful for all organisations seeking ways to involve users and carers in developing services they want.

Contents

Key points, Introduction, Getting Started, New Relationships, Forms of Involvement, Planning joint work, Holding an event, After the event, References

 

KEY POINTS

User involvement is about changing relationships and building trust between service users and professionals.

Service users and carers need to be involved from the start and on an equal basis in any initiative. Plans need to reflect their concerns and priorities as well as those of professionals.

Working together over time on a project in which objectives and responsibility are genuinely shared is one good way of developing a more equal relationship.

Service users and carers need the time and the money to develop their own networks, ideas and projects independently.

When holding meetings and events, attention to practical details - accessible venues, transport, times of meetings, substitute carers, facilitators to help some service users, interpreters - is essential to enable people to participate. These cost money and take time.

Many people, including many service users and carers, find participating in meetings difficult. Meetings and events need to be planned in ways which make participation as easy as possible and ensure that people are heard and valued.

Participants in meetings and events should know what has happened to their contribution and what effect it has had, if commitment is to be sustained.

User involvement needs to have strong backing from senior agency managers and to include practical and moral support for operational staff.

 

INTRODUCTION

The things that stand out about the workers we identify as empowering are such things as being treated as individuals and real people. They engage with us as equals rather than distancing themselves and seeing us as dependent clients. Part of this is recognising the expertise that we have gained from our lives by living with being a user.- Wiltshire Users Network.(1)

Government policy requires social services departments to demonstrate the involvement of service users and carers in decisions about the services they receive. Such involvement is likely, over time, to result in fundamental changes in the nature of services and in the way they are delivered. It is therefore challenging, to service users and carers, to front line professionals, and to senior managers and agencies alike.

These guidelines outline some of the key issues that will need to be addressed if the involvement of service users and carers in local service development is to become a reality. They are based on an action research project to increase the involvement of service users in locality planning undertaken during 1993-95 by the Horley locality of Surrey Social Services Department, and include a training model developed in collaboration with the National Institute for Social Work. They are not a blueprint for all forms of involvement, though common principles do apply.

Members of the planning group from which these guidelines derive were Maureen Burbridge, Horley Access Group; Hazel Chignell, Horley Social Services; Mary Foster, Horley Social Services; Tessa Harding, National Institute for Social Work; Bert Long, Insight; Helen Oldman, Horley Social Services; Richard Olliver, Voice., and Edna Smith, Redbridge consumer participation adviser.

 

GETTING STARTED

Service users and carers have rarely had an influential voice in the provision of local services (though this is gradually changing). Some have gone their own way and established their own services, like Centres for Independent Living and other user-led initiatives. Many people are still dependent on social services provided by statutory, voluntary and private agencies, however, and much can be done to make those services more responsive to individual and collective needs (2).

Any proposal to enhance user involvement needs to involve service users and carers from the start and on an equal basis, so that plans reflect their concerns and priorities. Organisations of service users and organisations of carers should be approached, as well as interested individuals. (Organisations of service users are different from voluntary organisations in general or organisations for service users run by others.)

Carers and service users have different concerns and perspectives, and both should be included. They should not be expected to speak for each other.

Service users and carers often feel anxious about getting involved. The world of meetings and planning is unfamiliar to most people, including most of those who use social services; it is easy to feel nervous, unconfident and at a disadvantage in the face of confident professionals who seem to know what they are doing and to know each other. These same professionals may also exercise a considerable amount of power over someone’s access to services and quality of life: it is daunting to risk antagonising them. Support, reassurance and clear ground rules help.

 

Professionals are also often nervous about engaging with service users; they may fear criticism or anger, or that they will be unable to meet demands. Involving users in a significant way means changing many traditional attitudes and ways of working; it is difficult to open oneself up to a process that may require a fundamental reappraisal of how one does one’s job. Clear encouragement, leadership and support from senior managers are essential.

Involving an outside facilitator who recognises the concerns and fears of all those involved is a useful way of starting with a clean slate and enabling new relationships to be forged.

 

NEW RELATIONSHIPS

A good working relationship between service users and carers on the one hand and professionals on the other has to be tried, developed, worked at and tested by the people involved: as with any other relationship, it is about getting to know one another, give and take, honesty on both sides, and developing trust and mutual understanding. It cannot be ‘learned’ at a distance or from books or guidelines.

The split between service users and carers and professionals is in many ways a false one. Service users are also people who have a variety of skills and life experience and live in a world beyond ‘services’; professionals are also people with personal experience of disability and distress and families and friends they worry about. This commonality of experience is a strength, helping to get beyond the divisive ‘labels’ of particular roles, and it is helpful to recognise it openly.

Service users and carers often have startlingly different concerns and priorities from those that professionals think they have. Assumptions should not be made. Professionals often have their own agendas which get in the way of real listening. A new relationship requires that service users have the opportunity to build confidence and develop their ideas. and that professionals are willing to stop and listen.

Professionals and service users and carers also have different ways of expressing themselves - a different form of discourse. Both the more formal language and style of professionals and the more anecdotal and interpersonal style of people who use services are legitimate and should be accorded equal respect.

Difficult episodes are likely to arise in changing relationships. Some people who use services have spent a lifetime not being listened to, and many are angry and frustrated with their circumstances and how they have been treated in the past. That anger is an important source of energy and motivation, but can sometimes be difficult for people to channel constructively. Similarly, many professionals feel a strong sense of personal responsibility for services and sometimes react defensively when challenged. That defensiveness can be a real block to progress unless it is understood, recognised and defused.

User involvement remains tokenistic without the working together which produces results that service users want. The sharing of ideas is only the first stage in the new relationship. Its test is in active collaboration, sustained over time, in different aspects of an agency’s work.

 

FORMS OF INVOLVEMENT

Involvement by service users and carers can take a variety of forms; a multiple approach will increase opportunities and enhance confidence and experience. A series of different kinds of events and initiatives will give more people a chance to be involved.

Service users and carers can be involved in planning and prioritising local services, in formulating and awarding contracts, in appointing and training staff, in defining quality, in service and project development, and in the monitoring and evaluation of services.

They can also be involved at a variety of levels, from being consulted about agency-led initiatives, through full participation, power-sharing and partnership, to user-led initiatives and user control of services.

Resources need to be made available for service users and carers to meet independently, without professionals present, to develop their own networks and accountability and their own agendas. This is not a luxury or an added extra but a key to effective participation by service users. Money for arranging and holding meetings, for employing facilitators and trainers of their choice, for exchanging information and for developing user-led projects and initiatives is essential if service users and carers are to play a full role in service development.

 

PLANNING JOINT WORK

A planning group, on which service users and carers should be at least half the members, is at the core of any initiative in participation. Service users and carers should be involved from the start and on an equal basis.

The planning group will need to undertake a great deal of groundwork, both in practical planning and in clarifying, discussing and reflecting on the issues raised. It needs to become a safe learning environment and a place where many issues that the wider project will address can be rehearsed. The planning group is the place where there is greatest opportunity for relationships to change and for a sense of mutuality to develop.

The person chairing the planning group has the major responsibility for setting the tone of equality and shared responsibility for outcomes. He or she will need to demonstrate respect, mutuality and an enabling style: ensure that everyone is listened to, solicit and acknowledge contributions, encourage and support ideas, be open and honest about limitations, restrain over-dominant members, and discourage excluding’ behaviour, such as the use of jargon or unexplained references or ‘in-jokes’.

This same enabling style will also need to be taken by the person facilitating any project or event that emerges from the planning.

The objectives for the initiative should be clear, specific and agreed by all participants in the planning group. This focus will need to be firmly held to throughout the planning of the initiative if it is to keep on track and not be diverted to other ends. It is all too easy for other agendas to intervene: for agency priorities to take over, for professional tensions to divert attention, for voluntary sector anxieties to dominate discussion, for new demands to be made from outside and so on. Don’t let this happen.

What service users and carers have to say should be valued and listened to. People need to be given space and opportunity to talk, at their own pace and in their own way. Silence does not necessarily imply tacit agreement: it may mean the opposite.

Professionals need to learn to listen openly and not to impose their own agendas. They should not assume they know what is required or be too anxious to ‘make things happen’. They also have to learn not always to jump in and take responsibility.

Involving service users as equals in planning, managing and evaluating services challenges the way people compartmentalise their roles and their thinking, and this arouses a lot of anxieties on all sides. These anxieties need to be recognised and space made to talk them through, if they are not going to become barriers to change.

 

HOLDING AN EVENT

Environment

The environment should be comfortable, fully accessible, relaxed and informal. Premises should be checked for accessibility by someone who knows what they are looking for: it is unwise to accept the word of the venue manager. The provision of transport, relief care, assistance, signers and translators may be needed to enable people to attend and participate.

Balance

It helps if participants can identify with those leading the event. One or more of the facilitators should themselves be a service user, actively demonstrating shared responsibility.

In mixed professional service user events, at least a third and preferably half or more of the participants should be service users, in order to redress the tendency for professionals to dominate and to give users a sense of a strong identity.

Style

A friendly, relaxed and open approach encourages people to contribute and to enjoy the event. Small groups enable everyone to talk and be listened to.

Ground rules

Explicit ground rules about how people are expected to behave are helpful in setting the tone and letting people know where they stand.

For example

Ground rules need to be agreed by all involved; everyone is responsible for making sure they are held to, and people need to be reminded of them from time to time.

Purpose

The purpose of the event should be clearly spelled out in the invitation and at the beginning.

The agenda should be structured in such a way as to ensure that there is a clear order and purpose to the day, but the content should be open, to enable people’s own issues and priorities to emerge.

Content

People should know from the start what will happen to the ideas and information they contribute, and how they will be used. They should also know that they will be given feedback afterwards on what has happened as a result of their efforts. Positive action must follow if optimism and credibility are to be sustained.

People will express their views in their own way, often through anecdote or accounts of personal experience. This is legitimate and important information for planning and evaluating services.

Most people find it easier to talk in small groups rather than in large ones, especially if they do not know others well. Events should be structured in such a way as to enable people to talk in ways which feel comfortable to them.

Different user groups may need different approaches to enable them to contribute fully. Some young people or people with learning disabilities for example will feel more comfortable in meetings structured with their preferred way of doing things in mind’, ask them. Facilitators chosen by and accountable to service users can help to ensure that people are heard in meetings.

There are bound to be strong and divergent views amongst participants. Lack of agreement does not in itself matter. Facilitators need to ensure that everyone’s views are noted, that dominant individuals are politely restrained, that points of conflict are defused but not ignored, and that people go away feeling that they have both heard and been heard.

Evaluation

An informal evaluation (written or spoken), asking what people did and did not like about the day and what they have learned, is not only helpful in shaping future events but is often illuminating, giving people the chance to express their reactions on the spot.

AFTER THE EVENT

Outcomes

The outcome of the day should reflect fully what participants said, including where there are divergent views. Being listened to with respect and understanding gives people a real sense of hope and potential.

However much people enjoy the actual event, that is not enough. There has to be a plan to follow up proposals and to keep informed those who were instrumental in developing them, if involvement and commitment are to be sustained.

Any breakthrough in communication or new sense of mutual understanding needs to be built on if it is to have a long term effect on relationships. Having clear expectations of involvement and collaboration between service users and operational staff, supporting specific initiatives, and recognising and rewarding progress of help.

Changing attitudes and agency culture is difficult to achieve and sustain over time; the impact on practice is not always easy to measure. Senior managers need to be as involved as operational staff, working with and listening to service users and carers, in order to promote and reinforce the new relationships.

 

We would like to thank Surrey Social Services and National Institute of Social Work.