Introduction to "Asking the Experts" It was clear from talking with many people working in health, social care and the voluntary sector that:
We wrote this guide to:
We have looked at the literature, some 'top down', from statutory agencies and government departments, some 'bottom up', from user groups themselves. There are many texts on general principles and methods (see references, and other resources). There isn't as yet a great deal of research evidence on effectiveness in involving people, and even less formal evaluation of the involvement process, that is, how policy, planning and delivery of services have been affected by user involvement. (Although local work in the East Riding of Yorkshire is making a contribution. See 'The Impact Project ') Where we have found evidence we have quoted it, and we have also referred to work that is forthcoming.
In producing this guide we were being asked 'What works'? This is not a simple question, and there is no simple answer. What is clear is that there is no one 'right way' or 'best method' for involving people. The approaches you choose depend on what you want from the process. There are ways that are better or worse for particular ends, in particular circumstances, or for working with particular people. You will need to use a variety of approaches, not rely on a single one. Before you ask 'how?' you have other, and in many ways more important ground to cover:
"Too often in the past the road to participation has been paved with good intentions only to lead up time consuming and wasteful dead ends which result in disillusionment and resentment for all concerned"1. This guide is intended to help you to avoid this experience. It provides information to help you through the thinking and planning you need to do to 'ask the experts' the people who pay you to provide services on their behalf. The first section looks at the context for 'involving people', and the thinking you need to do to develop practice that routinely involves people who use the services you provide, and the wider public who pay for those services and may come to use them in the future. The second section considers the 'fit for purpose' of some of the ways of involving people. Experience from practice of using the particular approach, and research or evaluation findings, are given where possible. The third section looks at particular considerations when working with people who use health and social care services. What we are talking about some definitions Who should be involved in shaping health and social care services? People who have used a service in the past, are using a service now, or may do so in the future. 'Service users' include carers, who are service users in their own right, although they will experience services differently to those they support. Past and present service users are expert through experience. Others of us are potential service users, and contribute to shaping services as experts in our own needs. See 'Public consultation and user involvement', & 'Consumers or Citizens?' Involvement 'Involvement' was chosen because it has a wider meaning than other commonly used terms. According to the Oxford English Dictionary involvement means 'included, concerned in, emotionally engaged with'. This allows for concepts of active, ongoing joint working that are not encompassed in 'participation' (taking part in) or 'consultation' (looked to for information or advice). What we are talking about is involving people in shaping health and social care services, by taking part in:
See 'Models that describe levels of involvement' Ways of working with individuals to increase their involvement in the choices and decisions they make about their own care or treatment are part of professional practice, and not within the scope of this guide, although the broad principles given here may apply in that context. Public Consultation and User Involvement - what's the difference? "the processes by which services learn from those they serve"2. User involvement might be defined as inclusion of people who have experience of service use in the planning and management of services, while public consultation is "a local attempt to seek the views of a broad constituency of persons"3, who are not necessarily current or past service users. Sometimes it is appropriate to involve only those who have experience of a service, but if your are planning to develop accessible, appropriate, effective services then you need to include the wider public. This would include people who:
In this sense, we are all potential users. If services are to be needs-led you will want to engage with the wider community to allow:
See 'Who should be involved in shaping services? & 'Consumers or Citizens?' " Community involvement... becomes a catalyst which helps organisations re-examine their purpose, cultures, systems and mechanisms thus improving their functioning at all levels and on all issues."4 Because it is ethical, desirable, and required of you! Advantages (because you want to) "Being in favour of better public consultation or more user involvement is rather like being against sin;... it is hard to find disagreement."5 Involving service users has advantages, both to the organisation, and to the individuals who use the services they provide. They include:
Why involve people? The policy imperative (because you must) All public services now have a duty to plan for and carry out ongoing consultation with the people who use those services, and the taxpaying wider public. They must demonstrate the impact that public involvement has on their plans, and how the outcome of that consultation is fed back to participants. The tenor of government strategy and policy documents over the past ten years has been clear. Public involvement should be integral to service planning and delivery. There should be a systematic and continuous dialogue with service users and local communities rather than intermittent projects or activities. People should help set the agenda, not just respond to what has already been determined by provider agencies. "The aim is to achieve an inclusive process with the accent on the widest possible local involvement from the outset, rather than consultation on a near-final product" 11.
Agencies are expected to involve people with regard to the services they receive, at a personal level: "Patient and carer involvement is essential to help people make informed decisions about their own health care" 12. and in planning and service development: "Health Improvement Programmes will provide the opportunity for user and public involvement in planning the strategic development of health services" 13. "Users [of maternity services] should be actively involved in planning and reviewing services. The lay representation must reflect the ethnic, cultural and social mix of the local population." 14 'Changing Childbirth', an early attempt to involve service users, recommended that Maternity Services Liaison Committees had a lay chairperson as well as lay representation, recognising how this could change the balance of power within a committee. Primary Care Groups are required to:
Local authorities are required to enter into partnerships with local people and community groups. They must consult with local taxpayers and service users on how services can be improved to achieve Best Value in terms of quality, efficiency and cost. People should be clear about the standard of service they can expect so that they can hold the authority to account 16. The 1994 Framework for Local Community Care Charters in England 17 says that in developing local charters ( for example, 'You and Your Services' for Housing, Health and Social Service) there should be: " An entitlement to expect that users' and carers' views will be actively sought and listened to, including:
New vehicles for user involvement and public consultation: The best value process is intended to drive up quality and efficiency ("high standards at an acceptable cost") through responsiveness to the people who pay for and use local services. Local authorities are required to enter into partnerships with other local agencies, the business community, voluntary groups and "local people, individually, and collectively through community groups, local women's organisations and residents' associations". Communities must be involved in deciding on priorities and setting standards, so that they can be clear about what to expect of local services. Targets will be published in a local performance plan, and performance will be reviewed against these local targets as well as performance elsewhere, so that continuous improvement can be achieved. Only by understanding what people want and need can efficient, cost-effective services be achieved. Performance Assessment Frameworks The experience of service users, carers and patients is one of the dimensions of performance to be monitored within the Performance Assessment Frameworks for both health and social services. 'Modernising Social Services' requires councils to carry out annual satisfaction surveys " to see how well people are being served". See 'Satisfaction Surveys' The NHS will conduct an annual National Survey of Patient and User Experience "to ensure that the NHS hears and acts on the voice of those which it serves".Since health and social care services are so intermeshed the Association of Directors of Social Services has suggested that there might be a joint approach to obtaining user feedback. 18 Health Improvement Programmes (Research Findings) The King's Fund Centre used semi-structured interviews and document analysis in 4 health authorities, 17 Primary Care Groups and 8 local authorities in London to assess the early impact of joint Health Improvement Programmes. 19 The study suggested that involving the public (as a community, rather than just as service users) was a key Health Improvement Programme principle that could improve responsiveness to local needs, build community capacity to meet health needs, and strengthen public sector accountability to local populations. The study found that:
There was a strong case for seeking to rationalise the process locally. It might be appropriate for one partner to take responsibility for co-ordinating public involvement on behalf of the Health Improvement Programme partners, on the basis of shared goals and agreed action plans. The NHS Plan 2000 (www.nhs.uk/nhsplan/npch10.htm) states that " patients must have more say in their own treatment and more influence over the way the NHS works". Measures to bring this about include:
Primary Care Groups and Primary Care Trusts are required to respond to local need when purchasing and commissioning services. "There is already considerable scope [for local consultation] within primary care. Members of the wider primary healthcare team are already in touch with local networks. Community nurses have been producing community profiles which could be used to develop stronger links with the community." 20 With effect from 2 October 2000 The Human Rights Act incorporates the rights people
have under the European Convention on Human Rights into UK law. How might the Act relate to involving people? Consider a possible
interpretation. Details of the Act can be obtained from the Home Office Human Rights Unit http://www.homeoffice.gov.uk/hract Freedom of Information Act This will give everyone a legal right to see information held by public bodies (with exceptions). For details see the Freedom of Information Unit website www.homeoffice.gov.uk/foi/ Models that describe levels of involvement The range of ways people might be involved People might be involved:
For the purpose of:
Arnstein's ladder of participation 22 This model emerged from citizen involvement in planning in the USA. It is arranged as a ladder with each rung representing the degree of power the citizen holds. "... the fundamental point [is] that participation without redistribution of power is an empty and frustrating process for the powerless. It allows the power holders to claim that all sides were considered, but makes it possible for only some of those sides to benefit. It maintains the status quo."
Arnstein describes the type of "non-participation" represented by the lower two rungs on the ladder as attempts to 'educate' participants. Levels 3 and 4 allow participants to hear and have a voice, but they have no power to ensure that their voice has influence. At level 5 participants can advise, but the right to decide is retained by the agency. True participation begins where 'Partnerships' enable negotiation and shared decision-making responsibility. Arnstein considers that partnership working is most effective when participants have an organised and resourced base from which to work, and to which they are accountable. At levels 7 and 8 participants form the majority in decision-making arenas, or hold managerial power. Applying this model to the traditional forms of user involvement within most agencies is revealing. Where are you on the ladder? Do you have clear, genuine reasons for being there? Arnstein's model has subsequently been adapted, for example by Wilcox. 23 Your intent when involving people might be:
Good quality, appropriate, accessible information underpins all involvement, but does not itself constitute involvement. Giving information alone is a one way process. It suggests that there are no alternative options and that no contribution is required from the public/service users. Just giving information may be appropriate when:
Allows choice between limited, pre-determined options, but not an opportunity to propose alternatives or take part in putting plans into action. Consultation (only) may be appropriate when:
Views are shared, options are generated jointly, and a course of action decided upon. Deciding together will be appropriate when:
Working with others to make decisions and carry through the action agreed. This may be appropriate when:
Supporting independent groups to develop and implement their own solutions. May be appropriate when:
On one level, these models illustrate levels or degrees of participation that are appropriate for a particular purpose. On another level, they illustrate the progression that takes place as service users become more involved, and their power and responsibility develops and extends. What we are talking about - some discussions to have before you start Under the NHS and Community Care Act and Carers (Recognition and Services) Act 1995
service providers are expected to assess the needs of informal carers independently from
those of the person being cared for. It can be difficult to ensure that both individuals
can express their needs and preferences in privacy. The needs of carers and users may not
coincide, and this can be a source of conflict 24. "People have the right and duty to participate individually and collectively in the planning and implementation of their health care"Declaration of Alma Ata, World Health Organisation 1978 Service users have rights both as citizens and as consumers. In a democratic society citizens are entitled, by virtue of being a member of that society, to have a say in how the society is run. They have a reciprocal duty to contribute to the wider society. Consumers have the right to information that allows them to consider how best to use their money and choose between goods and services. Regarding people as consumers was seen as a way of driving up quality. If Sainsbury's offered a better service than Tesco, Tesco would have to improve its performance to compete. But health and social care service users can't generally take their money and shop elsewhere, so choice and preference cannot be exercised through purchasing decisions. For public services, quality, responsiveness and flexibility are driven by citizens participating in decision making and holding service providers to account, not by the consumer in the market place. Current government thinking is that agencies should engage with service users as citizens. Considered opinion or instant response? "to give a considered reply people need information, an opportunity to hear others' experiences and views and scope to develop opinions in a supportive social environment". 25 When we ask people for their views we often expect them to give an 'off the cuff'
response, without the opportunity to deliberate (weigh in their minds) or reflect. Or you
may be asking someone about something of which they have no experience. Some approaches to
involving people allow little opportunity for reflection, or for giving the information
they would need to form a view. Experience suggests that if people are given background information, an opportunity to hear others' experiences and views and weigh them against their own, and time to reflect on and develop their opinions, they are able to deal with complex issues and weigh costs and benefits. They also then take a wider, or citizen perspective rather than acting purely in self-interest. Service users themselves say that they want the opportunity to prepare, by having
information in advance, or by knowing what they will be asked, for example. Choosing a way of involving people needs to take account of the relative values of
considered and unconsidered, and perhaps uninformed, views. Representativeness & Accountability Representativeness can mean either:
Referring to the sample (proportion) of people you would need to engage with (to respond to a survey, for example) to be confident that findings from your study group could be generalised to the whole population group you are interested in.
Referring to the ability of individuals (for example, on committees and in discussion groups) to reflect the views of a wider group or constituency. Representative of... or being typical Achieving statistically representative consultation is not always easy, and can be
resource hungry. Where there is little tradition or experience of wider participation in
public life it may be difficult to engage appropriate numbers and types of individuals and
groups within the community. You will need to actively search for minority and
marginalised groups to include their views. Speaking of citizens' panels Vittles describes them as " a pool of people who
comprise, at best, a broad cross section of the population." But he feels their
contribution is more representative than that of "the collection of lobbyists and
activists who have had disproportionate power...in the past." 26
Being a representative... There is no single community, but a number of over-lapping groups who identify with each other in the short term or over extended periods by virtue of the characteristics or interests they share, or the goals they wish to achieve. 28 The more diverse a group, the more difficult it is for any one individual to represent
them. Who, for example, could speak for all disabled people? Users themselves are often concerned about their accountability. Agencies can
enable representatives to fulfil their responsibilities by providing funding and
administrative support that promotes organised groups. Facilitating an election process
can give the individual the confidence of having a constituency.
Good practice guidelines were drawn up after a survey of practice on user and
carer participation in social services committees. 29 People may be representative, or typical, users, but not the representative of other users. The legitimacy of their views rests in their personal experience, and it is likely that those in similar circumstances will share much of that experience. The roles in which people participate, and their responsibilities, need to be discussed and made clear for all concerned. 30 The 'professional' user? a concept challenged It is suggested that agencies question 'representativeness' (in both senses - see 'representativeness & accountability') to:
People do need to be involved over a period of time in order to:
Yet users who have acquired skills, confidence and knowledge through their participation are no longer considered 'typical' of the 'ordinary' user, but to have become 'professionalised'. 'Professional' is a positive attribute when applied to paid workers, but used to invalidate the contribution of service users. Would it follow that the 'ordinary' user is someone who is uninformed, who has not had the opportunity to debate or reflect on issues, and so cannot challenge professionals? (See 'Considered opinion or instant response?') If they are to participate on the same terms as the professionals, users need the same opportunities to develop their skills.
" People make judgements about what they have heard, picking out what they consider to be quality contributions, weighing up what coincides with the values of the organisation, reconciling or arbitrating between views that conflict". 32 We need to recognise that there is inevitably an imbalance of power between professionals and service users. Professionals have training, they command resources, and they represent agencies that have statutory powers and duties. Involving service users aims to tip the balance of power further towards the user. (see Arnstein's model ). Unless they recognise the influences upon them, professionals and organisations can exercise considerable control. They can be selective in whom they engage with (compliant users rather than the 'awkward squad' who might be more critical), and in hearing what service users say. Before you start preparatory planning Are you ready? A checklist for policy makers, planners, commissioners.....
See also: Promoting user involvement - a summary from research findings & Supporting user involvement - a summary from research findings Are you ready? A checklist for involving people in service settings 33
(Adapted from Wilcox D 1994 Participation Guide) This list looks daunting, and you will only be able to answer some of the questions as you develop your plan. There is plenty of evidence that considering these things, and getting everyone on board before you start, goes a long way toward ensuring that your initiative will be successful. Promoting the involvement of service users- a summary from research findings "Any number of commentators currently provide guidelines for encouraging meaningful user involvement at both the individual level and for groups, with strategies designed for workers to use with their particular client groups but also for managers to encourage appropriate representation and involvement at decision-making levels. But it is only by acknowledging the changes in practice which are implied by encouraging greater user involvement that the rhetoric of participation can become an active reality." 34 The Health Advisory Service Review 'Voices in Partnership' 35 (which relates to involvement of mental health service users, but has wider application) identifies the following as ways of promoting user involvement: Direct methods:
Indirect methods:
Conditions for effective participation:
Clear expectations are an essential starting point. Principles should be agreed then a 'contract' drawn up setting out expectations on all sides. Swindon People First (for people with learning difficulties) developed a contract for organisations wishing them to take part in committees. We couldn't have put it better.
Supporting user involvement a summary from research findings A Health Advisory Service review 36 based on reports, site visits, surveys and literature review suggests that adequate resources (time, money, support, and staff time) are one of the factors most likely to promote successful user involvement. It recommends:
In another study 37 more than 200 service users in 19 day care centres across 3 local authority areas were interviewed, as well as 150 users and carers through independent user forums. Service users felt that training was fundamental to their ability to participate meaningfully and actively in service planning and delivery. Training requirements included:
The research found that involvement depended on staff commitment to users taking part, and their willingness to accompany and support users.
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