Any manager working in integrated care for older people will be aware of the current moves to involve older people in service and care planning and empower them so that they can make their voices heard and acted on in debates. Some of their performance indicators or organisational policies may require them to set up systems for consultation or advocacy. Alternatively, they may find that they need to do this to address problems with service user satisfaction, the efficiency of resource use, or the systems of care delivery, for example. They may need to know and demonstrate that their service is meeting the needs of older people in a way that is acceptable to them and valued by them.
Working in an integrated care system, however, makes developing the user voice more complicated. Managers need to develop systems that address the views of individual older people and groups or organisations of older people, and they need to be able to do this so that the discussion relates to the whole system of care, not just their service. This is because the experiences of older people are of the whole system, and their evaluations will reflect this. They might not distinguish between different services or organisations. Involvement in integrated care, therefore, is more complex than being involved in shaping a single service with well-defined boundaries.
This chapter outlines some of the debates about empowerment and provides short descriptions of some of the strategies that managers may want to try, both for individual and group involvement and empowerment of older people.
The concept of ‘empowerment’ has been developed against a background of authoritarian services that have not listened to service users, and indeed have developed systems of decision making that have excluded them, both as individuals and as groups. ‘Empowerment’ means correcting this imbalance by changing systems and structures and providing support for service users so that they do have real power in the services they use. This may take several forms. Advocacy is one specific form, where an advocate speaks up for individuals or groups, and puts their case or expresses opinions on their behalf. As such, it falls short of empowerment, as it still means that the service user is dependant on the availability and skill of the advocacy provision, but in some circumstances it may be the most useful approach.
Sometimes the terms ‘involvement’, ‘empowerment’ and ‘advocacy’ are used interchangeably, as if they were the same thing. While there is some overlap, we use the following definitions in this chapter:
As integrated services have developed, there has been a move away from thinking about service users as passive recipients of care who do not challenge the assumptions that professionals make about what they need. One of the features of state or charity-run services has been that service users are expected to be grateful for what they receive, and are not considered to have the necessary knowledge or understanding to question what is provided – still less, to play an active part in shaping these services.
This ethos is now changing. As private-sector companies become more involved in providing services, they bring with them ideas about customer choice that have also affected the thinking of other providers. As people become more aware of the way in which they pay for services – either through taxation, insurance or by direct payments – they become more likely to see themselves as consumers, and therefore as people who should have a say in what is provided. Consumerism is not the only driver for change, however. Increasing challenges to the expertise of professionals and policy makers, coupled with a movement to make services more democratic and accountable, have also led to calls for service users to be more involved in the way that services are run.
Service user involvement, therefore, is an aim of services and systems that subscribe to the values of democracy and consumerism. It is a broad term that covers many other ideas and concepts, but essentially it is about making service users part of the decisions made by service providers. As part of the move towards involvement, we may also need to consider the concept of empowerment, and the particular strategy of advocacy.
The outcomes for services are:
As Barker, Bullen and de Ville (1999) say, ‘There is no right way of involving the public. The choice of methods should be matched to circumstances in which it takes place.’ This section looks at the various different models that have been identified in services. These can be represented as a continuum of empowerment:
provider control — partnership — user control
The main dimension of the continuum is power. At the left-hand end, the power is all with the service provider, while at the right-hand end the power is all with the service user. Often, however, it is difficult to tell one from the other. Sometimes what may look like a partnership is really tokenism, where older people are included in processes so that the organisation looks as though it is involving them, but in fact they are not really listened to. Managers need to move towards the middle of the continuum, to a partnership position. This position ensures that involvement is effective and meaningful, and avoids the development of user-controlled services, which may give rise to the problems outlined (see User Control).
At the provider-control end of the continuum, services users may be invited to sit on committees, or given evaluation questionnaires, or asked about their preferences, but there is little effort to do more than collect their views, and there is no commitment to do this effectively, or to act on these views. Evaluation questionnaires that are given out may be poorly designed or difficult to complete, and there is no system for collecting them or analysing them. Similarly, people may be asked about their preferences for care, but there is no system for responding to these opinions or wishes.
These tokenistic models are most likely to operate in organisations that have been given empowerment targets to meet but in which the change in thinking that is required for empowerment has not taken place. An example would be where a committee has to have one member who is a service user member, so it invites someone to join but chooses them from a small pool of familiar people that it feels are supportive rather than critical of the service.
Tokenism does little to achieve real user empowerment, merely serving to give the appearance of meeting externally imposed requirements. It can be a precursor to real changes in thinking, as service providers become accustomed to involving service users, but it can also be an excuse for not doing more.
Partnership sits near the middle of the continuum, representing a position where power is shared more equally between service providers and service users. This requires efficient processes of communication and discussion to ensure that users are sufficiently well-informed to participate in discussions without feeling that they are at a disadvantage because they do not understand key issues. These may include information about service agendas and goals, policy directives, and service resources and expenditure.
Partnership also requires changes in organisational structure so that service users become part of the decision-making procedures and have responsibilities and duties towards improving services, rather than simply commenting on services and having no responsibility to promote improvements. Sharing responsibilities should also be accompanied by shared rewards and recognition. There are, however, problems in negotiating payment for user input. If the service provider pays the service user, this can cause problems with their benefit entitlements – but also, perhaps more importantly, the service user may lose their independence from the service provider and feel unable to be critical.
At the user-control end of the continuum, service users have most, if not all, the power – for example, by setting up their own services. Complete user control is difficult to establish within existing service structures because of the legal regulations on accountability, which normally specify some form of professional skills or knowledge as a basis for practice.
Because of these constraints, complete user control is usually only possible if users set up their own, non-professional services. These services may meet needs that service users feel are not met by established services, but they may not have the benefit of professional knowledge and expertise. They may also have problems in accessing stable funding sources. Most typically, they are voluntary agencies or charities and are dependant on donations, which fluctuate according to the popularity of their cause.
User-controlled services may pose a healthy challenge to established services, but if they remain completely separate, they may cause a number of problems for older people. They may duplicate provision, complicate care delivery, and compete for resources. So where user-controlled services exist, it is important to find ways of working constructively with them.
Ask the following questions:
Chapter 11 identifies some ways of ensuring that older people are involved in planning. Empowering individual older people may be best done through individual advocacy services, keyworker systems and good quality information and communication about their options. These strategies should form a fundamental part of quality assurance processes in services but can become extremely complex when working across services – it is difficult to find a source of information that is comprehensive and up-to-date. Before service users can be informed, providers have to develop knowledge and understanding of the ‘whole system’. (This point is also reflected in Chapter 9, alongside a discussion of how to facilitate ‘thinking across the system’ in staff.)
To design a strategy for empowering older people who use services across the system, the following questions need to be asked:
Empowering individual older people requires a one-to-one approach in many cases, with an identified advocate who can inform people about their options and help them choose a course of action. This role may also involve supporting older people in disputes with service providers, so it may be better to identify an advocate who is independent of the service. In any case, they must have comprehensive knowledge and the opportunities to update this knowledge, as well as communication skills, and the time and skills to provide people with counselling when necessary.
If the aim is to empower groups of older people (a ‘user population’), then the first step is to define the groups. If the groups are made up of people with particular needs, make sure strategies are tailored for them, bearing in mind the problems that they may have. Ask questions about how to approach and identify potential members. Use proactive recruitment to help access those who are more frail or reluctant to participate to avoid a situation where groups are represented only by the fit and articulate. Consider how the older people’s involvement can be supported in terms of transport, facilities, and help with costs or payments.
If the aim is to tackle a specific organisational issue, then setting up systems for involvement can be time-limited, with clear aims. A specific focus also provides clear indicators for recruitment from service users or interest groups. Those known to have experience or knowledge of the issue are obvious choices.
If the aim is more general – to include service users on quality assurance committees, for example – give more thought to identifying appropriate people to invite. Just because someone is older does not mean that they have an interest in the issue at hand. It is important to consider skills and experience, bearing in mind that choosing people who are already familiar may exclude others with contributions to make. Make the basis for the invitation clear to everyone – in other words, what contribution or representation is expected. Succession planning is also important – if this person stopped being involved, who would be asked to replace them?
Various instruments can be used to facilitate user involvement at both an individual and a collective level. These include strategies to:
The following strategies have been used to empower and involve groups of older people:
Each of these is described in detail below.
In the context of older people’s issues, these tend to be local groups, set up to debate and campaign on local issues, with a membership drawn from older people’s groups and individuals. Membership often depends on availability and energy, so they tend to exclude older people who are frailer or less mobile. They can be supported by local services, which may donate office facilities or meeting space. They are independent of services, and are wide-ranging in their interests, so their activities may not be directly relevant to service development.
This kind of group is more focused than a forum, and sets its own agenda to address a particular issue. User panels may invite people along to provide information, or canvass wider user views and experiences through questionnaires and other tools. Participants enjoy being involved, but unless their reports are acted on, they can feel frustrated. These panels need a wide-ranging membership and clear terms of reference to maintain credibility.
Here, agencies carry out specific exercises to canvass user opinions about specific issues. This can be through surveys, public meetings and focus groups. In addition, developments in information technology have increased the possible consultation mechanisms. However, views have to be collected through a user-friendly process to maximise responses. The process may be managed by a researcher commissioned to carry out the consultation exercise, but the findings are limited to the specific issue in question.
These are made up of people who use services, and who experience similar problems and have similar needs. They may have national or international links, and so can draw on a wide range of information and experience. They are often formally constituted, with structures and systems for consultation, and are relatively stable. They can therefore offer representatives as members of committees or user forums.
In this instance, user groups set up their own services to provide an alternative to existing services, fill gaps in services or complement existing services. They are managed, and sometimes staffed, by service users, and are usually non-profit making. They may rely on grants or fundraising activities, and so are often vulnerable to changes in funding priorities. They meet the needs and preferences of service users, as they themselves have identified their activities. They can play an important role in integrated services.
This involves older people getting together around a particular issue and campaigning about it. Examples include campaigns for better pensions or equal access to services. Traditional methods have included marches and petitions, but recent technological innovations have led to more high-tech campaigns, such as emailing politicians. Campaigns can be very effective around specific issues, but are difficult to sustain over time and across issues, although longer-term, broader campaigns can develop from initial movements.
This exercise was initiated in Noord-Brabant, the Netherlands. It aims to involve elderly people by developing local policy. The idea is to try and stimulate as many older people as possible to think together about their future, and about how they like to live in their home and neighbourhood. They can do this by answering questions such as:
Older people and their organisations are responsible for taking the initiative to organise the project, because they are often aware of which services they currently need, and which they are likely to need in the future. Local authorities and provinces need to collaborate, perhaps working alongside a welfare organisation, to offer support such as finance, advice, additional capacity and other services.
The project takes one-and-a-half years to complete and costs around 17,500 euros, 50 per cent of which is paid by the local authority. This model is being rolled out across five other provinces, with a total of 46 projects. Some have already finished and the main conclusion was that this simple method really works. For example, in the village of Berkel-Enschot, positive outcomes of the project included:
For more information about this project, go to the PON website (see Web links).
In addition to the strategies outlined above, there are also some other approaches that can be used to empower older people in shaping their own individual care. These include:
Each of these is described in detail below:
Services can be set up to inform and advocate of behalf of older people using services. ‘Advocacy’ may form part of the role description of staff providing services, but staff can feel some conflict between advocacy and their role in the organisation – particularly if there are disputes. For this reason, an independent advocate role is sometimes the better option. It can be supported and funded by provider organisations, or by independent bodies such as voluntary agencies.
Co-ordinating advocacy and information is very important in integrated care, as it ensures consistency across agencies. There are some debates about when an advocacy service should become involved. If advocacy only starts when there is a dispute or a problem and difficulties have already begun, this is in many ways too late. However, routine advocate support may be expensive and beyond the means of individual services. In the Netherlands, a system has developed in which older people have ‘advisers’, and this has been well evaluated. Services elsewhere could consider setting up a similar advisory or advocacy service across agencies as part of their process of integration.
One approach that may overlap with advocacy systems is to develop a system in which the older person has a named individual who is responsible for assessing their needs, planning their care, delivering their care and monitoring its delivery. Someone who oversees care may be called a ‘care manager’, and someone who directly gives care may be called a ‘keyworker’ or ‘named carer’, depending on the country and system. Over time, a relationship between this person and the older person develops, which allows trust to be built up and communication to be effective. Where keyworkers have some control over resources, they can plan care and allocate resources with full negotiation and discussion with the older person. Where they do not hold budgets, they can act as advocates on behalf of the older person.
Keyworker and care management systems need to be set up so that the relationship is sustained over time, and so that staff are aware of their responsibilities and have the skills to carry them out. This has implications for training and staff development, and also for the way in which work is organised within the agency. Staff must be able to maintain relationships, which means having a stable role and clear client responsibilities. They also need the skills to develop and manage relationships with clients, and the knowledge of resources and systems that will enable them to co-ordinate care effectively.
Another way in which older people can be empowered is by having an effective care-planning approach that actively requires them to express their views and wishes. Many care-planning systems are written and carried out for the benefit of service providers, and choice is limited by the systems that have already been set up – for example, someone may get help going to bed only within the hours that have already been decided on for this service to be available. A strongly user-focused care planning system starts off identifying the older person’s preferences and needs, as they define them, and then looks to see how these can be met.
As with the keyworker approach described above, person-centred care planning requires staff with time and skills to do this, and recording systems that make the process of discussion clear. Care plans need to be negotiated carefully, with dialogue with the older person and, where appropriate, their significant family and friends. In integrated care systems, these may need to be extended across the system, to make sure everyone knows the aims of the care. This may raise ethical issues about the confidentiality of information, and practical issues of record design and accessibility.
One strategy currently being developed under various names is that of direct payments. Here, instead of services being decided upon by providers, the individual older person is given a budget or sum of money, which they can spend on the care and services that they decide that they need. This may mean that they buy services that are not provided by main agencies, or in ways that are not provided by traditional services, such as transport to social events that take place late at night. In some systems, the care may be provided by friends or family, in which case the money can go to them.
Direct payments potentially allow people to develop a care package themselves that will meet their needs and preferences better than existing provision. There are, however, some potential problems. First, individual solutions may not engage with service development, and individual strategies may not be incorporated into service development. Second, there may be issues of quality management – in other words that older people may not get high quality services, and may feel unable to complain or change them (especially if they are provided by friends and family). Third, the process of choosing services and managing them may be difficult for some older people, and so they may need some support.
For an older person moving into a care home, one of the greatest fears is that they will have a very different lifestyle to the one that they would like. Part of this fear comes from a lack of knowledge about care homes, which makes it difficult for them to imagine what life be like living in one. In addition, care home staff have found that when they first move in, older people are often too anxious ‘not to be a trouble’ to state their preferences and make requests.
The Centre for Care of Older People at the University of Northumbria and Newcastle City Hospitals Trust devised a ‘daily living plan’ for older people moving from hospital to a care home. The older person completed the plan with a member of the hospital staff (usually a nurse who had got to know them). This involved the nurse helping the older person to think about their preferred routines and habit – for example, what hobbies they had, and whether they liked to spend time alone. The hospital could then send the plan to the care home with the older person, so that the staff there could see what sort of lifestyle was preferred.
The plan was very popular with care home staff. The hospital staff also found it worthwhile, if time-consuming, and it made them think about aspects of life in care homes that they had not considered previously. The older people enjoyed the process, on the whole, although some were overwhelmed by the number of forms
to fill.
The daily living plan was extremely successful and, with careful monitoring, could be adapted to use in other circumstances – for example, as a general review of lifestyle and support.
For more information on the daily living plan, email the author at:
jan.reed@unn.ac.uk
The strategies and tools outlined earlier in this chapter indicate some of the staff development requirements of an integrated system that facilitates older people to have their say. Training must be available to develop interpersonal skills, including clear communication and negotiation strategies. In addition, staff need up-to-date information about the whole system of care, including what other agencies can provide and how these services can be accessed.
The new roles and practices involved in empowering older people may be very challenging to those accustomed to traditional ways of working, so staff may need support from managers and colleagues to sustain changes. Some strategies can be found in Chapter 9, but these may range from informal support networks and interest groups to more formal systems – for example, recruiting people who have appropriate attitudes and experience, or implementing appraisal and monitoring procedures that identify empowerment as a key performance indicator.
There are a number of potential barriers to empowering older people using services. The one that is most frequently raised is that of resource limitations. This may include financial resources, such as equipment and building modifications to make access to meetings possible. Supporting older people in making choices also involves staff time – a valuable resource that is often in short supply in organisations trying to make a limited budget stretch.
Financial resources can also include human resources – having a skilled and experienced workforce. Perhaps the most difficult workforce-related barrier, however, is attitudinal – that is, where that staff do not have positive attitudes towards the empowerment of older people. For example, they may have a general, ageist attitude that sees older people as less capable of involvement, or less deserving of empowerment. Negative attitudes may also arise from the workplace culture, where service users are seen as objects to be ‘processed’ as quickly as possible in order to meet organisational performance indicators. People who hold this view strongly may see empowering older people as a waste of time.
Communication and information are vital, as mentioned earlier, and facilities, access issues, resources and staffing also need to be considered. In addition, consider the following:
Involvement is an ongoing process that requires cultural change within organisations, and across the whole system of integrated care services. Involvement can help ensure that services are meaningful and useful, and that they are integrated. Users are well-placed to identify problems and gaps, and if they are involved they can make constructive suggestions for improvement, rather than resorting to complaints procedures, to make their voices heard.
The benefits to the whole system of integrated care can be huge, but developments in individual services may take time to spread across the system, and early days may be difficult as some services involve older people more than others. This, however, is part of the process of whole-system change, and is not a reason for not doing it.
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http://independent.livjm.ac.uk/healthforall – an internationally recognised structure that enables those working to improve the health of local communities and apply ‘health for all principles’ to meet and share information, research and experiences.
www.communitiesforhealth.net/health-activist/index.html – provides information about training health activists, including outlines of what skills are needed, and available training initiatives.
www.healthvoice-uk.net – a Health Voice Network website set up to enable more people to have more of a say in planning and improving services that affect their health.
www.healthyliving.org.uk/links.htm – the website of the Healthy LIVING Project, which works to bring people and groups developing healthy living initiatives together through information and communication technology.
www.ponbrabant.nl – Website of PON Institute for Advice, Research and Development in the province of North Brabant, the Netherlands. This organisation works in the fields of health and social care, housing and welfare, work and employment, education, culture, sports, and social environment. The site provides facts and figures and information about its projects and activities. It is in Dutch.