Social Care Research 59 - November 1994
Involving older people in community care planning

'Older people' form the largest group of community care users but the term does not refer to a static group: older people move in and out of user status as health and care needs fluctuate. Little is known of their role in planning or evaluating care provision. A report from the Social Policy Research Unit reviews practical initiatives seeking to involve older people. The review finds that:

• Some respondents (both users and providers) saw 'community care' in broader terms than are generally accepted. It might include housing and transport, for example.
• Practice is sometimes based on generalised assumptions about older people, neglecting the differing needs of people within the total care group.
• Desire for uniformity within services may take precedence over exploration of older people's preferences: successful approaches for one group of service users are not necessarily appropriate for older people but evaluation in this area is not usual.
• There is a disproportionate emphasis on meetings, whether public ones or those arising from membership of an organisation. However, 'forums' bringing together different groups are providing new ways of involving older people, though few are controlled by older people themselves.
• Older people may not be used to voicing their opinions to 'authority'. They need to be given confidence and the skills to take part in consultation.
• Chances are increasing for older people in service or communal settings to have some say in decisions affecting them but there are few opportunities for the majority still living in their own homes to become involved.
• Overall, opportunities for older people to get involved are rather limited and practitioners are markedly ignorant of what is being done elsewhere.
• The review suggests that a realistic model for involving older people might be a fluctuating commitment somewhere between the one-off event and sustained involvement.

Encouraging involvement

Now that community care is established, more attention is being given to the requirement of user-involvement generally and the potential contribution of older people is beginning to be recognised. However, many older people do not easily see themselves as having a role to play in planning or a right to voice their opinions about the provision and delivery of services. They also lack knowledge of what is available to them. This is particularly true of older people from ethnic minorities or those in rural areas and among more elderly and frail older people.

Some initiatives set out to redress this situation and many, if not most, included an element to provide information and to lay the foundation of confidence, as well as encouraging the acquisition of skills necessary for taking part in the planning process. The encouragement of self-advocacy - speaking up for oneself - is seen as one way towards this. There were also found to be increasing numbers of Citizen Advocacy projects where the voices of more vulnerable or inarticulate older people are heard through representation by those better equipped. This work can be, and is being, undertaken by older people. The review notes the importance of viewing older people as producers as well as consumers if attitudes to the potential contribution of older people are to change.

Who are older people?

The description 'older people' is used as a 'care group' term (compare 'physically disabled people', 'people with learning difficulties'). If the care group 'older people' means all those of pensionable age, it is apparent that there will be widely differing needs within the group, ranging from those who are involved in community care matters because they are looking ahead to the time when they might become users to those who are already heavy users of services. Older people's status as users may well fluctuate as their health or care needs change. Potential users, who could benefit if only they knew about and had access to services, must be remembered. The term 'older people' includes all these and the initiatives described are concerned to reach and to provide for their needs.

What is 'community care'?

Community care is a relatively new term and does not have an agreed definition. Respondents concurred in feeling that older people's concerns are primarily 'personal, social and health care' but some would include other matters contributing to quality of life, such as transport, housing and personal security.

'Ownership' - whose idea was that?

Initiatives offering opportunity for involvement may originate with statutory or non-statutory agencies usually operating with staff in the voluntary sector but funded by statutory monies; they may develop in the older people's movement, mainly in pensioner organisations, or they may be the outcome of community development action to meet local needs. Consequently control - or 'ownership' - may be vested to a greater or lesser extent in older people themselves.

The aims of initiatives have different emphases. Agency-led ones had the functional purpose of ensuring that provision met needs. Organisations such as pensioner's groups tended to see issues in terms of 'interests' and 'rights'. One group cited seeks to further the empowerment of older service users through active involvement in all aspects of social planning and provision, believing it can influence and produce change. Initiatives may aim to influence the planning process at points from the draft plan to the delivery of services. It seems that key figures within the agencies made decisions about how older people should be approached and about the medium of communication, relying on established practice. Consultation was not the norm and older people might or might not be told what happened to their views. These dimensions have to be kept in mind when assessing older people's ownership of initiatives. Openness of access is a key dimension when considering opportunities for involvement.

Meetings

Open opportunities are typically public meetings. Participants may not feel that their views, if expressed, reach the planning authorities as outcomes are unlikely to be linked to a particular event. The experience recorded in the review shows that the success of public meetings depends largely on accessibility in the widest sense. Thus such events need to be publicised well and their timing needs to fit in with the preferences of older people. The venue must be physically accessible and attention given to the needs of people with sensory impairments and those whose first language is not English. The notion of accessibility is further extended to include the content and style of meetings and it is recognised that older people may need help in adjusting to the format. Those attending meetings need to be clear about their purpose: "these meetings are all about user-involvement so please come ready to join in with your ideas, worries, grumbles or praise!" Sometimes the attempt was made to put the content of meetings into the hands of older people themselves. Examples are given of different ways of encouraging attendance, such as a competition or free beer!

Joining up

Membership organisations offer another, less open, type of opportunity for involvement. These often take the form of forums - bodies 'comprised of older people and/or their organisations or other organisations concerned with older people which have as a main concern representing the viewpoints of older people to a local authority or other statutory or public body'. Forums usually have their origin in the non-statutory sector though they are often funded by social services departments. Many have been set up as potential user-run groups but there is much variation in their independence from the statutory sector. There is generally an active core of members who may provide a service to very old, possibly isolated, people and the needs of this group may be brought to forums by representatives from day centres or other service centres. There are one or two indications of forums highlighting the financial constraints within which the statutory sector has to work.

The more informal type of organisation known as a 'network' aims to extend membership throughout a community to all user groups. There are a few networks which offer older people the opportunity for involvement from their own homes through the use of the post. Some initiatives are building up a database of groups and individuals.

'Your help is needed'

Some agency-led initiatives are termed 'closed' in that they invite particular users to take part. It seems likely that they will be under the control of the agencies initiating them. Involvement may be only short-term and probably restricted to more active older people, though some initiatives have actually targeted more elderly users. Various styles and applications of this type of involvement are reported, including some where groups took part in writing procedure manuals.

Where closed involvement is ongoing it is generally through the formation of panels or planning groups. The former involve users in considering particular facets of planning or provision and seem, from the examples cited, to give participants more independence from the initiating agency. They often have the support of a paid worker. One project has been particularly concerned 'to identify frail older people in their own homes' and to encourage them to comment on the planning and provision of community care.

Where people already are

The final type is termed 'home ground' opportunity. These are opportunities developed 'where people already are, rather than creating new structures' and they can assist the involvement of older people who may be unaware of other opportunities or for whom they may not be appropriate. Some of these users will be in service settings such as day centres and here it is recognised that a change in the attitudes of staff and volunteers may be needed before users can be involved in decisions about their activities and about the facilities available. Initiatives exist which have involved users in allocating resources and in planning and managing services with the minimum of outside support, though this may depend on the background and skills of the older people concerned.

In residential homes it is noted that residents are becoming involved in standard-setting; consequently providers are looking again at their policy and practices and reassessing the quality of care provided. Examples of work in group settings include consultation meetings with a commitment to keep members of the group informed of what happens to their comments so that 'people feel they have been listened to', an initiative to involve elderly Asian women and a venture to keep in touch with 'frail housebound and disabled people' who are no longer able to attend meetings of their group. Self-help groups brought together by shared health problems and which include people of all ages have also made a contribution to planning and provision.

Reaching older people at home

The majority of older community care users are still in their own homes but there are few opportunities for this group to become involved in planning and delivery of services apart from the few offered by network organisations. Home opportunities resemble 'closed' ones in that participants are usually selected through questionnaires. Service providers can be a two-way channel for giving information and for making views known and increasingly older people's concerns are being picked up and passed on through the knowledge which front-line workers acquire, though these users may not realise their involvement in the process.

The review notes the use by some development work of existing informal community networks (distinct from the membership type of network) to encourage involvement in community care. One approach has built a core group within a wider network. This group is trained in approaching and influencing the decision-making process and in using the media so that through their contacts with other older people they stimulate community involvement. The 'core group and network' approach could be a way of reaching isolated older people. Use of communication technologies, which might well make a contribution, were not identified.

About the study

The review of initiatives is the first part of a study looking at ways of involving older people and the outcomes for participants and for community care provision. It looks mainly at initiatives by voluntary organisations, community-based groups and community health councils but includes the statutory sector where there are joint or overlapping initiatives.

Over 100 initiatives were identified through approaches to non-statutory organisations and CHCs and these contacts were followed up by telephone and in writing in the second half of 1993. The review includes a descriptive directory of some 40 of these initiatives. At this stage of the research the views of older people themselves were not being sought and so the material is presented mainly from the perspective of those initiating developments. The second part of the research will look in detail at three initiatives to get the views of the older people involved.

The research can draw upon the experience and expertise of two advisory groups. One is made up of local older people who use services or who are involved with voluntary groups concerned with older people. A member of that group wrote this Findings. The other group contains people from all over the UK who through their work have a particular knowledge of and interest in user-involvement.

Further information

The full report Involving Older People in Planning and Evaluating Community Care: a review of initiatives is available from the Publications Officer, Social Policy Research Unit, University of York, Heslington, York YO1 5DD, telephone 01904 433608, (price £7.50). A single free copy may be requested by community, voluntary and older people's organisations.

This title is now out of print.