Public participation and marginalized groups: the community development model

Abstract

Objectives To develop ways of reaching house‐bound people and enabling them to give their views in planning and monitoring health and social care.

Strategy HealthLINK – a project based in a community health council – explored ways of involving older house‐bound people in the London Borough of Camden, in planning and monitoring health and social care using community development techniques.

Results HealthLINK set up an infrastructure to enable house‐bound people to have access to information and to enable them to give their views. This resulted in access for health and local authorities to the views of house‐bound older people and increased the self esteem and quality of life of those who became involved.

Conclusions Community development approaches that enable an infrastructure to be established may be an effective way of reaching marginalized communities. However, there are tensions in this approach between the different requirements for public involvement of statutory bodies and of users, and between representation of groups and listening to individual voices.

Introduction

Nationally and internationally the voice of users and the public in making decisions is recognized as essential to the legitimacy of those planning and providing health services. The UK Government set the agenda in 1992 with their initiative, ‘Local Voices’ stating that:

To give people an effective voice in the shaping of health services locally will call for a radically different approach…there needs to be a move away from one‐off consultation towards ongoing involvement of local people in purchasing activities… ¹

More recent initiatives, which aim to address inequalities, recognize the importance of involving communities as a way of increasing the self esteem of disadvantaged groups and increasing their capacity to help themselves.

However, after long experiences of paternalism typical of British planning and service provision, the recent emphasis on listening to local voices or working in partnership can be jarring to user and community groups. Whilst we have come a long way from the position that the professional knows best, there are many levels of involvement, from tokenism and manipulation to empowerment and user‐led services, which have been described elsewhere. ² Doubts about fuller community involvement have been advanced on a number of grounds.

Firstly, health and social service professionals often question the competence of lay people. Professional workers and managers form constituencies which operate on the assumption that they exercise power on behalf of users. The fact that the NHS has been largely free at the point of use has allowed a persistent belief that there is less need for vigilance in policing the activities of professionals in Britain than in the USA where market‐based provision predominates.

Secondly, elected representatives regard themselves as mandated to articulate what is in the common good above the clamour of disparate interests. ³ This can lead to treating user groups as a problem rather than a resource.

Thirdly, community involvement may give rise to expectations which professionals, politicians and managers consider to be unrealistic. Community workers and the voluntary sector can be seen as stoking up popular demand. This is especially so when workers are drawn from backgrounds close to communities with which they work, often seeing their work in relation to demands for justice. ⁴

It is against this background that the challenges and dilemmas of increased user participation in health and social care need to be considered. Many guides have been published on the processes that public bodies should use in consulting users and the public, but these often concentrate on the circumstances of the consultation – such as timing and location of meetings, access for people with disabilities, payment for carers and the management of the consultation. Important though these are, they will not be enough to enable people from marginalized groups, such as house‐bound people, to participate. ⁵ The task is to construct an infrastructure in which user groups can take part in a dialogue with other stakeholders about how citizens can share resources mindful of one another’s different needs. ⁶

A preliminary problem needs to be addressed: why should people bother to participate? This question applies to everyone, whether as patients or citizens. It will depend on whether the individual or group considers the investment as worthwhile and whether they have the time and resources to participate. This often requires considerable effort in learning the language and context in which participation is to take place. The question becomes more acute for people from marginalized groups. The people most in need of services face obstacles in accessing services. ⁷ House‐bound people and their carers are largely excluded at the moment and are particularly difficult to reach and often reluctant to give their views. There are many reasons that contribute to this:

• people may feel that it is better to accept the services that are provided, even if inappropriate, rather than to criticise them. Furthermore, older people, who are well represented amongst those who are house‐bound, have a tradition of putting up with services, especially if they are ‘free’;

• people may feel that their views will be ignored as has happened in the past; ⁸

• house‐bound people may need all their energy and resources to cope with the routine of living and do not have energy to spare for ‘participation;’

• house‐bound people are often isolated and in such circumstances it is easy to lose the confidence to express views or believe that they will be heard.

Policy framework for reaching marginalized groups

Reaching isolated and marginalized people is the major challenge for those attempting to involve consumers and the public and it is on this that their efforts should be judged. The World Health Organisation’s (WHO) European Strategy provides a framework for this enterprise, involving as it does community participation, co‐operation amongst agencies and health promoting public policies to reduce inequalities. It recognizes that user involvement needs to be located in the context of inequalities in health status which are linked to social power. The Healthy Cities Project is designed to show how WHO’s European Health Strategy can work in cities. ⁹

Working with marginalized groups and addressing inequalities between groups requires a multi‐agency approach as outlined by WHO. In Britain the organizational divisions in the planning and delivery of health and social care have been entrenched since the establishment of the National Health Service (NHS) in 1948. However, increasingly the government sees closer working between health and local authorities as essential. ¹⁰ Statutory authorities are being required by central government to engage in needs‐based multi‐agency planning and delivery of services – in a tough economic climate.

Camden is an inner London Borough, with a multi‐ethnic population and areas of social and economic deprivation side by side with considerable wealth. It has been a member of the WHO Healthy Cities Project since 1986. Funded by the local authority and the health authority, Camden Healthy Cities Project is located within the voluntary sector, and is concerned with integrating WHO principles into the mainstream activities of the participating agencies. One priority chosen early was the active involvement of older people in public health needs assessment.

In England and Wales CHCs have been trying out different ways of involving marginalized groups in health service planning since the 1970s. Community Health Councils are statutory bodies, established in 1974, to represent the interests of local people in the NHS. With a membership including representatives from the local authority, the voluntary sector and local community, they are supported by a small staff. The CHC role from the start was restricted to health services and was ill‐defined, giving considerable scope for variation. ¹¹

The two CHCs serving Camden had contrasting views of their role. Hampstead CHC saw its role as representing local people by responding to statutory consultations and initiatives and undertaking research to support them in this. Bloomsbury CHC, on the other hand, operating in a more multi‐ethnic and deprived population used community development techniques. It facilitated local groups and set up projects which could work independently of the CHC. It produced a mental health newsletter written by users and front‐line workers and convened a Health & Race Forum which brought workers together across the voluntary and statutory sectors including health and local authorities. Both these initiatives continued separate from the CHC.

Some CHCs recognize that they often fail to reflect the diverse and criss‐crossing interests within the population. ¹² Camden CHCs took the view that positive efforts needed to be made to give opportunities for such people to put their views to decision makers in the NHS. With the changing age structure, high levels of disability and chronic illness and a large proportion of single person households, efforts need to be made to ensure that house‐bound people’s voices are heard.

HealthLINK – a case study

This section documents a process for developing a users’ voice for ‘house‐bound’ people in Camden in planning public services. HealthLINK was set up in 1992 by the Camden Community Health Councils, with Bloomsbury taking the lead, and the Camden Healthy Cities Project. Its initial goal was to open up access to CHC services to people who found it difficult to attend meetings because of impairments, social and economic circumstances and disabling environments. The initiative was planned to be a network run by and for the members themselves, linked up with the CHC. Instead of delegates or representatives from the target population, all house‐bound people were included, whatever the reason. People may be house‐bound because of their physical disabilities, age or infirmity; because they are single parents with young children or travelling involves mental distress or because they are carers.

HealthLINK was supported by the statutory agencies in Camden and the voluntary sector. At the start it was funded by the CHC from within its budget and later from 1995 to 1998 by joint financing from the local and health authorities. The initiative was supported by an advisory group from local voluntary organizations, some HealthLINK members and the University of North London.

Identifying the members

Considerable background work needed to be done before house‐bound people and their carers were in a position to participate in consultations or give their views. Firstly, it was essential to identify house‐bound people and their carers in Camden, since many have only limited contact with either statutory or voluntary services. This was done through leaflets, targeted media coverage and through agencies in touch with them. A CHC leaflet about HealthLINK was circulated in May 1992 to workers who visited house‐bound people, including district nurses, home helps and staff from the meals on wheels and home library services. It was also made available in neighbourhood centres, general practitioner (GP) surgeries and health centres.

More than 150 people returned the leaflet expressing interest. A questionnaire was then sent to this group to identify their health related concerns. There were 80 replies, with the average age being over 70, most with long‐term disabilities. Group discussion meetings of house‐bound people were set up in 1992/3 to explore issues of concern. Discussion group meetings were fully transcribed rather than summarized. This was in order to feed back extensively to the membership in a way that individual voices could be heard and become a source of reflection and learning for others. Members made a point of saying that they were surprised and pleased to see what they said or wrote ‘in print’. The advisory group designed the discussions to shape the initial programme, to support the development of expertise based on dialogue amongst service users and to move towards establishing a steering group made up of members.

Developing the programme

In the discussion groups participants flagged up an extensive list of issues about services provided by public agencies and ideas about how HealthLINK could develop. This provided the basis for the initial work programme. The major concerns mentioned in the survey and discussion groups were on living conditions and quality of life, many of which are the responsibility of the local authority rather than the NHS. Concerns included home adaptation and repairs, hazards in the streets, air and noise pollution, transport as well as health and social services.

From the survey and discussion groups it was clear that members recruited to HealthLINK wanted information about the services available and how they could access them. Those who replied to the initial leaflet were sent a CHC‐compiled directory of domicillary services, were offered a free postal service to the CHCs and a quarterly newsletter. A guide to getting aids and home adaptations and special transport services were prepared with HealthLINK members. Information has remained an important service for members.

Members called attention to the loss of services which some had used for several years, especially local authority services, due to changes in eligibility thresholds. Their experience of changes to public services were documented in a short report entitled Things Aren’t What They Used to Be.

In health services, the major concerns of members were around GP services. A survey was carried out of members to help produce a leaflet, jointly agreed between users and GPs, about how best to use this service. The survey was intended to get a rapid impression of what HealthLINK members thought a GP consultation was and the good and bad aspects of using GP services. Members were invited to fill in an additional sheet, if they were ‘very unhappy with the GP and need something to happen now’. Community Health Council staff undertook to make themselves available to give advice and support with practical help such as writing letters. Thirteen respondents asked for such assistance. Of the 170 questionnaires sent out in August 1993, 59 were returned within 10 days. This was a rapid and large response, and one which was unprecedented. The survey results provided information for the leaflet ‘Making the Most of 10 minutes’. It informed CHC discussion with the local medical committee, that represents local GPs, and HealthLINK’s own contacts with primary care development workers from the health authority.

In addition to a regular newsletter, group meetings were held monthly and were attended by up to 25 people. Often someone from a particular Council or health service, such as chiropody, community pharmacy or meals on wheels, attended to explain, answer questions and most of all, to listen to members’ experiences. However, meetings could not remain the only basis for activity. A disability group pointed out that many of those initially attending meetings were already well known in Camden and were in better than average contact with the services. HealthLINK needed to contact people who found it difficult to get out and about and who were not in contact with services.

As a result HealthLINK has used many different consultation techniques in addition to meetings. These included postal questionnaires, telephone conferencing and face to face interviews in members’ homes. In telephone conferencing four or five members with a facilitator discuss a particular topic, such as meals‐on‐wheels, sometimes with the service manager also taking part in the discussion. Some members found this more difficult than a face‐to‐face interview, especially if they did not know the other participants in the telephone discussion. However, this method may have the potential for involving people and also overcoming their social isolation. Personal interviews by visit or phone, using staff or volunteers, were other ways of obtaining views, which provided members with social contact but is staff intensive.

Impact on planners and providers

Members found it difficult to be enthusiastic about user involvement when their daily experience was of the loss of services. This gave them little confidence that their concerns would carry much weight. The early responses of the statutory bodies confirmed this view. Following the discussion groups HealthLINK initiated meetings to discuss the issues worrying members and were disappointed by agency responses. This was especially pronounced following HealthLINK members’ efforts to consult on Camden’s first Community Care Plan. ⁸ Social Services were less responsive initially than the health service purchasers or providers, since CHCs’ remit did not cover local authority services. Later, a tragedy where an old man was found dead in his flat, unnoticed for several months, drew the local authority’s attention to the plight of vulnerable older people. This led to the setting up a 3‐year programme, the Vulnerable Older Persons Project (VOPP) in 1996. The voluntary sector felt that this project duplicated the work they had already undertaken, especially by HealthLINK. The local authority’s own review of the VOPP programme led to appreciation that HealthLINK’s labour‐intensive approach, involving personal contacts, had been more successful in identifying and involving frail elderly people than its own methods. Furthermore it was acknowledged that a social services project targeting small numbers of people with ‘problems’ could not hope to address the issues across agencies thrown up by the large numbers of potentially vulnerable older people trying to live ordinary lives. ¹³

In 1996 HealthLINK and Camden Healthy Cities held a successful conference on the ‘Quality of Life’ for older house‐bound people, attended by over 60 users, including from minority ethnic groups. This put forward an agenda for action as the basis for planning services across agencies for house‐bound older people. ¹⁴ An important objective was to enable frail older people to participate in regular consultations carried out by the statutory and voluntary services, rather than as a separate activity. This has been recognized in numerous subsequent initiatives. For instance, activities in 1999 included Camden’s Senior Policy Officer consulting directly with HealthLINK on proposals to modernize local authority structures and HealthLINK’s involvement in planning for a Healthy Living Centre. Likewise, the 1998 Camden & Islington Public Health Report devoted to the Health Improvement Plan for Older People gives prominence to evidence produced by HealthLINK. ¹⁵

Becoming independent

HealthLINK was initially run by CHC staff with no additional resources. It soon outgrew the capacity of CHC staff and needed a dedicated worker to develop the network and enable it to be a planning partner in its own right. When funding was obtained for a 3‐year period from 1995 to 1998, it was decided to focus on frail elderly house‐bound people and their carers, rather than house‐bound people in general, as they were not represented by other organizations and were often the most vulnerable.

This changed the focus of HealthLINK in two ways. As the members were amongst the most isolated of all house‐bound people, more intensive personal contact was needed to identify members and encourage them to attend meetings and participate in activities. HealthLINK responded to the demands of its members, who wanted services from HealthLINK rather than referral to another agency, by developing visits and activities. However, responding to members’ requests for activities led to a difficult balance between the core aim of HealthLINK – giving house‐bound people a voice – and other activities, such as support and health promotion including visits to the swimming baths. As workers focused more on support, less priority was given to HealthLINK’s long‐term aims and liaison with statutory agencies and policy makers. However, participating in activities offering social contact gave members the interest and confidence to later attend and speak at meetings with professionals.

The decision to focus on frail elderly house‐bound people also affected plans to turn HealthLINK into a user‐led organization. Members had little incentive to make HealthLINK user‐led. They were generally isolated and, even if they felt well, did not see running the organization as a priority at this point in their lives. People also felt that because of their health, they did not want to take on extra responsibilities or make arrangements that they could not keep. As a result management remained with the advisory group and with some HealthLINK members.

Discussion

Evaluations of HealthLINK undertaken in 1997 found that it had been successful in contacting and maintaining the interest of a wide group of people living in Camden and encouraged some to participate in consultation meetings, run by both the voluntary and statutory sectors across health and social care. A survey of members showed that they valued the contact as well as the opportunity to have their views heard. ¹⁶

In 1993 a national survey of projects that aimed to enable older people to participate in community care was undertaken. Researchers concluded that most of the initiatives they identified were not designed to enable frail older people to participate. They did not first explore the preferences of the people that they expected to be involved. They often assumed older people to be a homogenous group giving little attention to the diversity of circumstances and needs. ¹⁷ Most of the initiatives worked within the community care planning system and few appeared to challenge it. These were not mistakes that HealthLINK made. HealthLINK has shown how, by working in a developmental way, people will be prepared to participate and will gain confidence in other aspects of their lives by doing so.

The expertise of users needs to be nurtured and supported by an infrastructure. The features that led to success of HealthLINK compared with other attempts to encourage vulnerable elderly people to participate are as follows.

• The establishment of trust through the continuing involvement with members as individuals. The success of HealthLINK in making and maintaining contact with vulnerable elderly people has been due to personal contact with the development worker who has encouraged them to participate in health promotion activities, such as swimming. This gave people confidence to go on to attend and speak at meetings.

• The establishment of contacts over a long period of time. Collective activity does not give quick results and is only meaningful if an infrastructure is built up to allow dialogue between staff and members and amongst members.

• The delivery of ‘benefits’ so that members can judge what they get for the cost of their time and energy. This approach attempts to deliver two different kinds of rewards to participants: as consumers (that is improving specific services for each individual) and as citizens (that is providing opportunities for members to ask their own questions, learn from one another, express a sense of connectedness and act in concert).

• Independence of the organization which meant that members felt able to comment on services run by the council and the health service on which they depended but which were not sensitive to their needs.

The case study tracked the development of Health Link. In so doing, issues have emerged requiring further exploration.

Firstly, there is a growing importance of contact with people who receive services in their own homes as part of regulation. More people require services in their own homes. Processes for monitoring staff are more difficult than in large institutions. With home‐based services, lay people are actively engaged in self care backed up by vocationally trained non‐professionally qualified workers supported by professional staff. More of the hands‐on contact and support is provided by health and social care assistants who are not bound by ethical codes and where professional supervision is limited. What happens to auditing when services are provided behind closed doors? The fact that patients and carers hold the keys to these doors means that they may hold keys to audit of the services they use as well. If paternalism were ever acceptable between consultant and patient or specialist nurse and patient, it is very much less so between community nurses, GPs and health and social care assistants, and a disabled house‐bound person living alone.

Secondly, public involvement needs to start from a users’ perspective rather than from the point of view of the agenda of statutory bodies. HealthLINK members pointed to the importance of quality of life issues from the beginning. Addressing quality of life issues acts as a means for engaging users in developing and exercising their voice in the creation of an infrastructure. Therefore any infrastructure developed expressly to involve communities must include discourse on quality of life.

Thirdly, public involvement should be comprehensive. Members made it clear that their concerns and priorities were interrelated and not confined to health services. As a result HealthLINK increasingly operates in relation to all purchasers and providers in Camden. However, HealthLINK, as a project of the CHC, was in a weak position with the local authority or GPs in taking up members’ concerns. O’Keefe has noted that:

…the experience of HealthLINK shows that CHCs need to have statutory rights with respect to general practice and social care and that a primary‐care led NHS should have a strengthened system of accountability for general practice. ¹⁸

Fourthly, there are tensions for those wishing to consult local people between independent needs assessment and rationing. Legislative changes calling for needs‐led, effective services based on involving users are being implemented in a climate which requires prioritization. Identification of ‘need’ is never just a matter of technical discovery. ¹⁹ Users/and lay‐people generally should be seen as a constituency distinct from managers and professional health care workers. It is a matter of contestable judgement as to what people ‘need’ and there is much evidence of mismatches between professionals and users in identifying needs and priorities. ²⁰ Inequalities in power can affect the outcome of bargaining amongst constituencies or stakeholders. Fraser has argued that disagreement in interpretation of need reflects not just conceptual and moral differences but unjustifiable inequalities. ²¹ Klein’s discussion of prioritization insists on the importance of institutional supports for building consensus about decision making. ²² So far, the case has been made about consensus building amongst clinicians, professionals and managers with users notable by their absence. ²³ Considerable resources are invested in infrastructure supporting powerful stakeholders to examine issues of quality and evidence. Commissioners and providers have access to training, literature, equipment such as computers, opportunities to meet as part of their work and at specialist conferences. They take pride if their place of work is a ‘learning organization’. Commissioners may think of themselves as able to make common cause with users in shaping the activity of providers. The motivation amongst powerful stakeholders for user involvement is often to get public legitimacy rather than to improve the quality of decision making or redress power imbalances. The emphasis on infrastructure in developing HealthLINK was based on the view that members are people who use services more frequently than the average resident and who, because of their conditions, need services delivered in the home. Their views are based therefore on experience and are a potential source of expertise. ²⁴ This potential needs to be developed. HealthLINK members would benefit from being part of a learning organization just as professionals and managers do. There should be no surprise if, in the absence of an infrastructure for learning, each user group presses its own case. Sophisticated defenders of user involvement, such as Barnes, who are intent on developing processes for ‘active citizenship’, acknowledge the limitations of user groups when they are reduced to competing amongst one another. ⁶ HealthLINK resources were devoted to enable members to learn about the inequalities that prevail in Camden to counter‐act this tendency.

Fifthly, the methods for community involvement used by statutory agencies, which individualize service users, and those that treat users as members of groups and networks can produce different results. There may be differences between the kind of evidence that service users or community workers might have about needs and the extrapolations of epidemiologists from official statistics. The process of building an infra‐structure for user involvement is labour intensive and time consuming. The costs in terms of administration, transport and payment for substitute care to enable house‐bound people to develop their views together can also be considerable. However, this process delivers information that is crucial for the planning and monitoring of services; but is not being accessed through other communication systems.

In the short term the investment in community development approaches may seem more expensive than one‐off consultations. However, one off consultations using consultants and pollsters are also expensive and can only deliver a limited snap shot view. The reluctance of statutory authorities to meet the real on‐going costs of community involvement can lead to a trade off between equity and popular participation. Using established networks and rounding up the ‘usual suspects’ or using population surveys can provide a wide coverage in terms of numbers, but will not reach those parts of the community most in need. Investment is needed to develop the tools which can bring equity and popular participation together.

Sixthly, there are tensions for community workers who often present themselves as especially able to find out what people ‘on the ground’ have to say because they actually talk to them. In this view, they are the eyes and ears for the statutory authorities which fund them. This is the historical basis for community work in imperial regimes. Workers in HealthLINK did not see themselves as an interpreting service in getting views and voices heard, but as engaged in setting up an infrastructure so that users could develop their understanding of the problems they face and their own agenda to address these problems. This requires independence which statutory agencies may find uncomfortable, especially when those agencies carry enormous change agendas already. The other side of this tension, is that community workers and advisory group members need to remember that until user groups are user‐led, no well‐intentioned intermediaries are above suspicion.

Finally, CHCs need to reconsider their role. Community Health Councils can aim to facilitate the development of local groups rather than try to represent users by shadowing commissioners and providers and reacting to them. The shift from representation to facilitation is outlined in Fig. 1. Bloomsbury CHC’s relationship with HealthLINK shows that this can be done. As in this case it will throw up popular demand to widen CHC competence beyond the narrow limits of health services.

Figure 1.

Community Health councils and community groups: from representation to facilitation.

Conclusion

Community development methods, unlike other representational, citizens’ jury or market research approaches, treat participation as interactive and spiralling. Each member’s views becomes a resource for others and the expertise of users comes into play. It requires skills to transform dispersed opinions and points of view, which carry little weight, into a competent, self‐critical confident network which can plan in a more equal partnership with commissioners and providers.

Planning and auditing are not just technical exercises. Needs assessment, planning and service monitoring are value‐laden processes in which power over the determinants of health status can be contested. The community development model can provide a way of thinking about need, based on empowering people to develop the skills, knowledge base, confidence and social relationships to take responsibility for contributing towards defining rather than discovering need.

Whilst initially focusing on user input in relation to the NHS, HealthLINK has been an experiment in developing an infrastructure to enable housebound people to have their say in health and community care. The experiences of HealthLINK can provide lessons to community groups, statutory agencies and CHCs in looking at ways of involving marginalized groups.