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Keywords:

  • new social movement;
  • health consumers;
  • protest groups;
  • lay knowledge;
  • public participation

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Health consumer groups in the UK
  5. Pain, loss and the formation of protest groups
  6. Health consumer groups and the policy process
  7. Conclusion
  8. Acknowledgements
  9. References

This paper argues that a health consumer movement has developed in the United Kingdom over the last decade. Drawing on two empirical studies of groups that promote and/or represent the interests of patients, users and carers, it argues that groups formed by people with personal experience of a condition are now more widespread. Feelings of pain and loss can lead to the identification of others in a similar position, and to the formation of groups and action in the political sphere. Research shows that groups share a common discourse and follow similar participative practices, and there is extensive networking. Informal and formal alliances have formed to pursue joint action and indicate a wider health consumer movement. As governments have also increased the opportunities for participation, this has the potential for patients and carers to shape services in ways more responsive to their needs.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Health consumer groups in the UK
  5. Pain, loss and the formation of protest groups
  6. Health consumer groups and the policy process
  7. Conclusion
  8. Acknowledgements
  9. References

In the recent past, a number of new social movements across various countries have centred on struggles related to health and illness. A common factor in the genesis of these movements has been an individual experience of illness or bodily event which has led to identification with others in a similar position. Collective action occurs when people affected by a particular condition seek to alter the terms of engagement with healthcare providers and thus gain greater control over their own bodies. Some new social movements of the 1960s and 1970s concerned with health issues have been well documented. For example, various networks and groups related to maternity and childbirth grew out of the feminist movement (Lewin and Olesen 1985, Bastian 1998, Doyal 1998, Tew 1998). A mental health user movement also developed which grew from the experiences of those living with a mental illness, and aimed to represent their perspective (Brown 1984, Crossley 1999, Rogers and Pilgrim 2001). Similarly, movements related to disability (Campbell and Oliver 1996), HIV/AIDS (Epstein 1996, Weeks et al. 1996, Berridge 2002), gay and lesbian health (Weeks, Holland and Waites 2003) and health and environmental pollution (Brown et al. 2003) have developed from issues of concern to people in their everyday lives (Martin 2001).

This paper aims to show, first, that the formation of networks and groups by people living with, or with experience of, a particular bodily condition has become more pervasive across a number of conditions. Such groups and networks have also formed in response to what Jennings (1999) terms ‘pain and loss experiences’: this broader category that includes not only illness, but a range of events that impinge on the bodily integrity of the self and others. Second, there is evidence of a shared discourse and values across the groups that promote and represent the interests of healthcare users. They promote lay knowledge and experience, and have contributed to the development of participative and consultative processes. This is true even for groups founded in an earlier period. Third, we suggest that as a consequence, collaboration between health consumer groups within the same condition area and across the sector, has increased to a degree where it is possible to point to a health consumer movement. Member groups provide the basis for collective action in the social and political sphere.

In investigating the formation of patient and carer groups, their relationships with each other, and their strategies for action, this paper views such social groupings or movements as developing from personal experiences in the intimate and private aspects of life or, in the term used by Habermas (1984), ‘the life world’ of ordinary people. People are drawn into new social movements because they feel marginalised by dominant social practices, and movements gain adherents because a positive sense of identity can develop where perceptions are shared (Byrne 1997). Interaction both aids an individual in finding an explanation for a life event and helps to forge a collective identity through the development of a particular discourse and a set of perceptions and ideas on how action should be mobilised. Borkman (1999), in a study of groups in the United States, comments that self-help, mutual-aid groups and new social movements draw on narratives about personal experience to reconstruct negative identities and to plan action. As Rogers and Pilgrim (2001: 109) suggest in relation to mental health users, a particular identity is both ‘a ticket to entry and a source of solidarity’.

This paper also contributes to knowledge by showing that that there has been a ‘spill-over effect’ from earlier new social movements as newer groups draw on experience from the past and engage in the policy process and, thus, contribute to the politicisation of health issues (Melucci 1989, Meyer and Whittier 1994). Following Simon and Klandermans (2001), a broad definition of the political is taken. Groups become political when they approach third parties, and take action in the public arena. This may be concerned with obtaining redress, reshaping services, or by challenging the assumptions underlying policy and practice. A wider health consumer movement has the potential to shape services to make them more responsive to the concerns of patients and carers.

In making the arguments, the paper draws on two research studies based in the United Kingdom (UK) undertaken by the authors. Data from the first, research on health consumer groups and their impact on the national policy process (called here the De Montfort study because it was conducted at De Montfort University) are drawn upon selectively and are reported on more fully elsewhere (Baggott, Allsop and Jones 2004). This is discussed in the first section of the paper. We undertook the second study, the Protest Group study, to investigate health consumer groups largely excluded from the first study1. In this instance, groups had formed in response to adverse clinical events. We discuss the findings in the second section of the paper together with an analysis of the differences between protest groups and general health consumer groups. The third section discusses the role of government in promoting the development of health consumer groups.

Health consumer groups in the UK

  1. Top of page
  2. Abstract
  3. Introduction
  4. Health consumer groups in the UK
  5. Pain, loss and the formation of protest groups
  6. Health consumer groups and the policy process
  7. Conclusion
  8. Acknowledgements
  9. References

The De Montfort research aimed to study a cross-section of groups, their relationship with each other and their impact on the policy process at a national level. The term ‘health consumer group’ was used, rather than ‘patient group’. This term was defined as: a voluntary sector organisation that seeks to promote and/or represent the interests of users and/or carers at national level, to capture experiences across a range of conditions, namely: arthritis, cancer, heart and circulatory disease, maternity and childbirth and mental health. Groups with interests across a range of conditions were also identified. Statutory organisations and research charities were excluded2.

Research design and methods

We developed a questionnaire that aimed to map the characteristics and activities of groups: their internal structure, aims, activities and the type and frequency of contact with other organisations was developed. This was sent to the person within the group identified as being in charge of policy activity in the autumn of 19993. The effective response rate was 66 per cent (123 groups). To aid the analysis we developed a typology of groups: ‘condition-based groups’ were defined as those focused on specific conditions and ‘population-based groups’ as those concerned with all patients, carers or a specific population sub-group, such as children or ethnic minorities across a range of conditions. ‘Formal alliance organisations’ were defined as groups made up of other autonomous groups but linked by a shared interest such as genetics or long-term illness4. SPSS was used to analyse the questionnaire data.

Subsequently, in 2000, we undertook semi-structured interviews with leading members or paid officers from 39 health consumer groups. Although the interviews were with group leaders, not rank and file members, in practice these categories blurred. Those elected or appointed to leadership positions had been ordinary members; some were founder members. Interviewees who were employees, often had personal experience of conditions either directly or indirectly, and had been drawn to the sector for this reason. The interview sample reflected group characteristics such as size, type of group, condition area and date of formation. The interviews were taped, transcribed and entered into NVIVO qualitative data analysis software, and subsequently analysed to develop a grounded theory of internal and external dynamics. For the purposes of this paper, we draw mainly on the dominant themes relating to the values and norms of groups, what interviewees saw as their ‘expertise’, and the internal processes of communication.

In the final stage of the research, semi-structured interviews were conducted with other policy actors and stakeholders (n = 31), including individuals from general consumer and research charities, professional organisations, the pharmaceutical industry and government. A fuller discussion of the research is available in a forthcoming book (Baggott, Allsop and Jones 2004).

Health consumer groups in the UK: characteristics

The groups identified in the research were extremely diverse. They had been formed at different times and according to different traditions. Some had their origins in 19th-century philanthropy. Others had been established as charities in the post-second-world-war period to campaign for the extension of social rights, or had been set up for mutual support. Groups also varied considerably in size, in income and in their internal organisation. Larger groups sometimes had a structure of local branches while a few smaller groups, although their focus was country wide, were run from the home of a founder member.

Nevertheless, there were common characteristics. All groups, as might be expected, were concerned with issues related to illness, pain and loss. All focused on policy issues connected with the National Health Service (NHS), and none referred to private healthcare. Almost all groups were registered charities and over 90 per cent were membership groups, although in the mental health area there were a few charities that provided welfare services to clients on behalf of the state. Most groups prioritised a range of similar activities. These typically included providing information and advice for the general public, facilitating support services and activities for members, fundraising activities, raising awareness about a condition, and campaigning and lobbying on policy and services. Virtually all the groups were engaged in policy activity at a national level, although the scale of that activity and the tactics used, varied across different types of group depending on the policy context.

From the questionnaire data, Table 1 shows that two-thirds of health consumer groups in existence in 1999 had been formed in 1981 or after. This suggests an increase in the number of groups, a finding supported by Wood (2000) in his study of patient groups in Britain and the United States, although without a baseline date from which to measure it is not possible to be certain of the extent of this increase. More of the mental health groups had been established before 1981 (48%) than maternity and childbirth (40%) or arthritis (28%), heart and circulatory disease (23%) and cancer (22%) groups. Population-based groups (54%) were more likely to have been formed before 1981, while 68 per cent of condition-based groups and nearly three-quarters of formal alliance organisations (73%) were formed in 1981 or after.

Table 1. The date of formation of UK health consumer groups (De Montfort study)
Date of formationPercentage of GroupsNumber of Groups
  1. Source: Questionnaire data set 1999 * data were missing for 6 groups Due to rounding up, total exceeds 100

pre-1940  3  3
1941–1960  7  8
1961–1980 25 29
1981-date 66 77
Total100117*

Trends in group formation

Our interview data indicate that the formation of groups by people who have had personal experience of living with a condition has increased in recent years. Accounts of the formation of groups underline the findings of earlier studies that illness or bodily events bring a ‘biographical disruption,’ requiring a reconstruction of the self to take account of the changed status (Giddens 1979, Bury 1982, Charmaz 1983, and Williams 1984). Williams comments that narrative reconstructions can be used to ‘reconstitute and repair ruptures between body, self and world by linking and interpreting different aspects of biography in order to realign present and past, self and society’ (Williams 1984: 197). Williams comments that this may lead to various forms of action, but does not pursue the question of what leads people to form or join a group.

In the De Montfort research, common themes in the narratives of founder members of health consumer groups were: anger about what had happened to them; the perception that the condition was not well understood; a belief that service provision was inappropriate and a deep concern about the lack of information available for patients. Activists wanted to support others and to draw attention to shortcomings at a number of levels, such as changing the perceptions of professionals and the public and influencing national and local providers.

In terms of chronology, patient- or carer-led groups were formed first in the maternity and childbirth area or concerned children. Activists were mainly middle class, white women. In contrast, in the next wave – groups for mental health users – the social origins of activists were more mixed, although activists in the groups established by carers tended to be from the professional classes (Crossley 1999). In the literature and from our interviews, accounts illustrate the process through which others with similar views are identified and a group formed.

Within the maternity and childbirth sector, in the mid-1950s Prunella Briance established the National Childbirth Association. She had lost her baby and, attributing this to technological intervention, she founded the organisation in order to promote the use of gentler methods in childbirth (Tew 1998). Renamed in 1961 and with a membership of 45,000 and 450 branches nation-wide, the National Childbirth Trust (NCT) is now the largest maternity and childbirth consumer group in the UK. The NCT works with both local and national groups to put pressure on the national government to improve maternity services.

The Association for Improvements in the Maternity Services (AIMS) was formed in 1960 and, although initially set up simply to improve access to services, it has developed into a more radical group committed to increasing women's control over childbirth and, if they wish, to have a home birth. AIMS has become highly critical of technological interventions, and a former activist commented on the shared identity of members saying: ‘typically, they have become active after having their first child and they see themselves as having been assaulted’ (group interview 42). The perpetrators in this instance were identified as ‘OWMs’, the ‘old white men’ of the medical profession – male obstetricians who at that time dominated the profession. AIMS was one of the few groups in the De Montfort study where interviewees believed that charity status would undermine their independence and their ability to be outspoken and critical.

An absence of support also triggered the formation of groups such as the Twins and Multiple Births Association (TAMBA) in 1978, which aims to help parents cope with a multiple birth, and the Stillbirth and Neonatal Death Society (SANDS) in 1981, formed by parents who had been devastated by a stillbirth. Members of both groups had used their own experience to provide support for others. Despite some differences in priorities and tactics, groups in the maternity sector now actively collaborate with each other: they share the same broad objectives; they have similar perceptions; they sympathise with the feminist movement and have struggled against the medicalisation of childbirth. Each group tends to occupy a particular niche, so they do not compete directly. In recent years, the interests of maternity groups and medical professionals have converged as maternity services have slipped down the Governments’ policy agenda. Nevertheless, some groups collaborate with professional associations more actively than others.

Group formation following a personal experience is also apparent in the mental health field. Many groups have been established by carers, or have emerged out of carers’ experiences. The National Schizophrenia Fellowship was established in 1972 by a carer who wrote about his experiences in the letters page of The Times newspaper and reached a wide audience of people in a similar position (Levy 1981). Schizophrenia a National Emergency (SANE), was formed in 1986 by Marjorie Wallace, a journalist who wrote an influential series of articles, also in The Times, about the care of people with schizophrenia. These brought to public attention the plight of sufferers and their families, and according to Rogers and Pilgrim (2001) SANE has been successful in keeping these issues on the policy agenda. In addition, service users have played a significant role in the formation of national groups such as Survivors Speak Out and the UK Advocacy Network (Rogers and Pilgrim 1991).

Most mental health groups are unified by a history of struggle against the power of the medical profession and a concern to respect the dignity, social rights and autonomy of people living with mental illness. There are exceptions, such as one group in the interview sample, the Zito Trust, formed in 1994 by Jayne Zito after the murder of her husband by a man with a severe mental illness who was receiving care in the community (Rogers and Pilgrim 2001). Unlike most other mental health groups, the Zito Trust campaigns on issues that give a higher priority to public safety than to the civil rights of those with mental health problems. This suggests that the politics of pain and loss are not necessarily emancipatory or progressive, but can stem from, and reflect, deeply-held fears supported by a body of public opinion. The British tabloid press gives widespread coverage to the perceived ‘dangers’ posed by people with a mental illness living in the community. One consequence is that other mental health groups have found common cause with progressive elements of the medical profession and have formed a broadly-based lobby group, the Mental Health Alliance.

In the 1980s and 1990s, several new cancer groups were established by those with direct experience of the disease as either patients or carers. For example, CancerBACUP was founded in 1985 by Vicky Clement-Jones who was diagnosed with ovarian cancer when in her early 30s. She was appalled by the lack of information available, and the charity is now dedicated to providing accurate and up-to-date information for patients and carers. As a doctor but not a cancer specialist, Clement-Jones worked closely with others living with the illness as well as with health professionals. On her death, her own oncologist took over as chair of the organisation (Clement-Jones 1985). Cancerlink (1982), the National Cancer Alliance (1994) and the UK Breast Cancer Coalition (1995) were also formed by young women affected by cancer to support others and campaign for change (Revenson and Cassell 1991, Watts 1997, McNeill 1999). In contrast, Cancer Black Care, founded in 1995 by a man whose brother had died from cancer, was one of the few groups representing ethnic minority health in our study. At the time of the interview, the group was small and not well networked with other groups.

Within the arthritis area a number of groups have recently been formed by people with relatively rare conditions. An account given by the founder member of one such group illustrates well the process of recognition, attribution and action that leads to group formation. She said that she had met someone else with the same symptoms in an outpatients department and that: ‘just finding somebody who understood and didn't think I was going round the bend, it was so helpful’. They decided to form a group and for the first year ran it themselves with the help of their husbands. Litigation initiated by a parallel group against a drug company that had supplied a drug associated with the illness triggered a huge demand for information. She said: ‘. . . we were absolutely swamped. We had to get more and more people involved and [set up] a committee’ (group interview 15). In the case of rare conditions such as this, group members become experts. Specialist scientific knowledge is acquired by various means and combined with lay knowledge. A common aim is to raise awareness about the disease among health professionals and in particular to improve diagnosis at the primary care level.

By contrast, the De Montfort study identified few high profile groups, formed by patients or carers, in the heart and circulatory disease area. Even the British Cardiac Patients Association, set up in 1982, was instigated by doctors working at a specialist hospital undertaking complex heart surgery. In a study of five US cities, Davidson, Peenebaker and Dickerson (2000) also found that heart groups did not appear among the leading patient support groups. Heart and circulatory disease does not appear to arouse feeling of anger and resentment, or pose a threat to identity, in the same way as the conditions mentioned previously. This may relate to the high incidence of heart disease, the age and sex of those affected, the known links between lifestyle and the disease, and to the forms of clinical intervention available.

We identified some smaller heart groups set up by patients or carers. Cardiac Risk in the Young (1995) was established by a parent whose son was diagnosed with a potentially fatal heart condition, and the Cardiomyopathy Association (1990) was formed by a patient diagnosed with hypertrophic cardiomyopathy, a heart condition associated with Sudden Death Syndrome. Different Strokes, set up in 1996, is a group run by ‘younger stroke survivors who recognised and had experienced the then woeful lack of support and shortage of relevant information’ (Different Strokes 2003). These conditions are all relatively rare and/or they concern younger people. This may explain the emotional and structural factors driving group formation.

New social movements, some theorists suggest, tend to attract activists from an educated middle class concerned with cultural change, and this is supported by the findings (Gouldner 1979, Rootes 1995). A professional background and previous activism, as well as negative experiences related to the diagnosis and treatment of a disease, were common characteristics of those group organisers. Age may also be an important variable. A number of the groups in our study had been formed by younger people. Some interviewees referred to pressure from younger members to put certain issues – such as genetic testing – on the organisational agenda. The two groups representing older people also referred to grass-roots activism and the importance of ‘grey power’.

From the example of heart disease, it is clear that people do not mobilise around all conditions in the same way. Small and Rhodes (2000) note in their study of Cystic Fibrosis, Motor Neurone Disease and Multiple Sclerosis support groups that some members did not attend meetings because they were too ill or because they did not want to associate with people who were at an advanced stage of the illness. More investigation is needed to explore why the barriers to membership and group formation may be greater for some conditions than others.

Shared norms and values: towards a health consumer movement

On the basis of the interview analysis, the De Montfort data indicated that not only was there a common discourse and perceptions within health consumer groups in the same condition area, but that there were also shared values and norms across condition areas providing evidence for a wider health consumer movement. A common discourse has developed, the notion, for example, of a ‘cancer journey’; ‘living with’ an illness, rather than ‘suffering from’ a disease. The concept of ‘a long-term condition’ as a broader unifying concept has tended to replace the more limited and more clinically-oriented ‘chronic illness’; the experience of ‘carers’ as well as ‘patients’ is considered important, and the notion of the ‘expert patient’ has developed. As Bourdieu (1991) has suggested, communities are defined by language and perception.

People who speak for groups gain their authority and legitimacy from drawing on the lay experience of living with, or living through, an illness, pain, or loss. This culture has also come to pervade groups whose origins lie in the philanthropic or advocacy tradition. The groups in our data set that were not member groups had appointed people with an illness to their decision-making bodies; had employed them on projects; and had consulted widely with the constituency. All groups in the data set acknowledged that the lay experience brought a particular expertise which added to their claim to speak for patients, whether a group was run by paid officials, or by those with direct experience.

In relation to HIV/AIDS, Epstein (1996) shows that expertise has many facets. It develops from how lay people use scientific, clinical knowledge as well as the lay experience itself. In interviews people spoke of their own struggle to develop knowledge and expertise through consulting specialist professionals, websites and evidence from randomised controlled trials, so that, as one interviewee put it, they knew ‘enough to become a doctor’. As Brown (1992: 269) has commented: ‘lay persons gather scientific data and other information and also direct and marshall the knowledge and resources of experts in order to understand the epidemiology of the disease’. The Cochrane Collaboration's web-based databases provide global access to research data, and groups in our sample reported using many of these sources as well as getting information directly from experts.

Sharing the subjective experience of living with illness, pain or loss is one aspect of health consumer group activity, but groups may also codify knowledge systematically by collating information and undertaking research. Lay knowledge, like scientific knowledge, is negotiable. It helps both to construct individual and collective identity and contributes to political resources. As most (80%) health consumer groups in the De Montfort study ran helplines and produced pamphlets for the general public (87%), they regarded themselves, and were regarded by other stakeholders interviewed, as repositories of expertise. Many groups analysed helplines to spot emerging trends and to legitimate knowledge claims.

Those interviewed in the De Montfort study also placed a high value on consultative and participatory practices. For membership groups, this ensured cohesion and gave authority to leaders as ‘holders’ of interests. Schmitter (2001) has used the term ‘participatory governance’ to refer to new forms of governance that require the engagement of a range of nominally equal interests in decision making. Health consumer groups used a variety of means to communicate with and to involve the membership. Newsletters, special projects, meetings, a branch structure, conferences, fun days, lobbying events and, less frequently, internet chat rooms were used to develop connections between members and the group headquarters.

There was a recognition by virtually all those interviewed that their role was to reflect the concerns of the membership and that interaction was a two-way process. A very small minority of interviewees referred to internal conflicts. Sometimes, a splinter group formed, or a resource or management failure led to a crisis for a group – a reminder that for membership groups, survival depended on their own efforts. Group leaders drew on the expertise of members, both as a matter of principle, and to maintain cohesion. Members looked to the leadership to inform them of policy developments, to manage external relations and to develop a programme of action.

Health consumer groups and the media

Another trend identified in the research was the importance placed by groups on favourable media coverage, and most groups in the data set had appointed policy or media officers, sometimes as a top priority. The accounts given above indicate that media coverage is often crucial to group formation, as it allows others with similar problems or views to be identified. A number of founder members talked of being overwhelmed following media coverage. As Jennings (1999) points out, the media have a strong interest in illness, especially since pain and loss issues reflect both public interest and commercial considerations. The experiences of individuals provide stories, and some groups had a database of members who were willing to tell their story. Data can be filed by region, gender, age and diagnosis and used to select copy for local or national journalists. The British media have tended to be supportive of health consumer groups, perhaps because their main target for criticism has been the medical profession, scientific experts and government.

Not all causes, however, receive equal, or necessarily positive, coverage – hence the importance to health consumer groups of cultivating media contacts. Interviewees from both arthritis and mental health groups complained about being ignored or the subject of adverse coverage. In particular, mental illness was still considered to carry a stigma and groups felt that the tabloid press reinforced negative stereotypes. This view is supported in research by Philo (1996) who found that the reporting of dangerous and psychotic behaviour outweighed the coverage of chronic mental health problems.

Women's health issues receive considerable attention, especially in the broadsheets and in television documentaries. Cancer, and particularly breast cancer, attracts wider coverage than might be expected, in terms of mortality (Henderson and Kitzinger 1999, Saywell, Beattie and Henderson 2000). Some health consumer groups found that media attention could be counter-productive when it diverted attention from the issues that they wished to promote. For example, one breast cancer group said they were trying to get breast cancer for older women on the agenda but had been asked for a story about a young, preferably blonde, mother with a diagnosis of breast cancer. Similarly, some maternity and childbirth groups believed their efforts to reduce technological intervention were undermined by journalists who mocked their ‘earth mother’ image, and by press reports about celebrities who opted for elective caesareans.

Networking, informal and formal alliances

The De Montfort study identified extensive networking and both informal and formal policy alliances between health consumer groups. There was extensive networking between health consumer groups themselves and between health consumer groups and national consumer organisations such as the Consumers’ Association and the National Consumer Council. These extensive inter-connections demonstrate a discourse, a shared assumptive world, and a community of interest between groups, and they support the argument that a clearly defined health consumer movement exists.

In reconstructing their past, a number of interviewees referred to particular defining periods or events that had sparked active networking. In the late-1980s, an informal alliance between carers’ groups was established to seek legislative changes to assess carers’ needs, and this eventually led to additional payments for carers (Baggott, Allsop and Jones 2004). At around the same time, following intensive lobbying by a range of interconnected groups in the health sector, an opportunity presented itself to shape the maternity service. This led to a new policy on childbirth, endorsed by the Department of Health (DOH 1993).

From the late-1980s, health consumer groups across the board were concerned with the Conservative government's health reforms. These introduced quasi-market principles into the health service and groups feared the consequences. From their own accounts, an informal alliance of patients’ groups, the Patients Forum, began meeting around 1990, and was formalised in 1996 as an association of health consumer groups and affiliated professional associations. Concurrently, another alliance of groups with a common interest in chronic illness began to meet. Known as the Long-term Medical Conditions Alliance (LMCA), this group appointed its first paid officer in 1996. Most recently the Mental Health Alliance, a coalition of health consumer groups and professionals opposed to the reform of the 1983 Mental Health Act, forced the Government to withdraw its bill from the 2003 legislative programme. The reforms would have restricted the rights of people with a mental illness receiving care in the community.

Formal alliances are a relatively new phenomenon: 11 were identified in the research. These are made up of clusters of health consumer groups who identify a common interest. Some alliances are large. In April 2003, the LMCA included 112 groups and the Patients Forum had a membership of 81 groups. The consensus among those interviewed was that joining an alliance served a number of purposes. First, it provided an opportunity for learning about how to influence the policy process; second, it improved access to policy networks. Resources could also be shared. Larger and better-established groups supported those less fortunate by providing training and co-ordinating lobbying activity. Groups that joined an alliance had evidently weighed the costs and benefits in terms of their own place in the ‘market’. Indeed, a small minority of groups said they saw no advantage in joining an alliance.

In summary, the trends outlined above indicate a health consumer sector that is capable of collective action. It can be argued that the increase in the number of groups formed by people with direct experience of a particular illness has assisted groups across the sector both to construct and defend a situated lay knowledge and to follow participative and consultative practices. These factors have been important in building the trust necessary for collaboration and collective action both within, and across, groups. UK health consumer groups have taken joint action and, from time to time, campaigned effectively to amend or delay legislation (Allsop, Baggott and Jones 2002).

Pain, loss and the formation of protest groups

  1. Top of page
  2. Abstract
  3. Introduction
  4. Health consumer groups in the UK
  5. Pain, loss and the formation of protest groups
  6. Health consumer groups and the policy process
  7. Conclusion
  8. Acknowledgements
  9. References

During the De Montfort study, it became apparent that a few groups in the data set had extended their activities from support and influencing policy to include protest against a ‘perceived injurious experience’ linked to a claim for redress. In his discussion of pain and loss, Jennings (1999) acknowledges that a range of events associated with illness and other events can impinge sufficiently to cause a threat to identity. Such events may be felt directly, or indirectly when they affect close others such as kin, lovers and carers, but whether action is taken, and in what form, depends on how events are perceived and how responsibility and blame are allocated. In making his argument, Jennings draws implicitly on attribution theory. This was used to explain pathways to disputing by Felstiner, Abel and Sarat (1981) who described the process as ‘naming, blaming and claiming’. First, something has to be perceived as injurious; second, someone or something must be blamed; and third, a course of action must be determined.

Felstiner, Abel and Sarat (1981) demonstrated that pathways to dispute arenas are socially-patterned and that they are influenced by a range of social and structural variables. Although they did not investigate group formation and action, their theory is important in understanding the formation of health consumer and particularly, protest groups. In the research, we used the term ‘protest group’ to categorise groups where the primary task was to seek redress where the cause of the injury was attributed to an individual or agency.

A data set of 26 protest groups was identified from those giving written and/or oral evidence to five recent public inquiries (DOH 1994, Health Select Committee 1999, The Bristol Inquiry 20015, Royal Liverpool Children's Inquiry 2001, Shipman Inquiry 2002)6. Data on these organisations was collected from their websites and from the LexisNexis database, a newspaper archive. The aim was to establish the similarities and differences between protest groups and the more policy-oriented health consumer groups.

The data were entered on to a matrix to record selected characteristics such as the date of formation, why a group was established, who was held responsible and blamed for the injurious experience, and the form of redress sought. Table 2 shows a sharp increase in the numbers of groups. Seven groups were established between 1981 and 1990 and 15 were formed in 1991 or after. Groups formed in the 1980s were more likely to be either advocacy and advice groups, such as the Association for the Victims of Medical Accidents (AVMA), the Prevention of Professional Abuse Network (POPAN) and Inquest; or membership groups concerned with people who perceived themselves as damaged by vaccines or medication such as the Vaccine Victims Support Group UK and Battle Against Tranquillisers. Some of these groups had engaged in legal ‘class actions’ for compensation (Gabe, Gustaffsson and Bury 1991).

Table 2. Protest groups in the UK in 2003 by date of formation
Date of formationPercentage of GroupsNumber of Groups
  1. Source: Protest Group study data set 2003

pre-1980 15 4
1981–1990 27 7
1991–to date 5815
Total10026

The fact that more than half the groups were formed in 1991 or after suggests that numbers have increased. As the total number of groups formed in each period is not known this may be an artefact of the data. Many of the groups referred to themselves as ‘victims’, a term that Borkman (1999) suggests is a characteristic of ‘fledgling’ groups. But, the implication is that responsibility for the harm caused lies with another human agent who is blame-worthy. The two largest categories of groups were 1) those formed by people who believed that they were the victim of a medical error or ‘adverse event’ and 2) groups where members attributed their illness or disability to medicines or vaccines. Anger about a lack of informed consent and the absence of information was a common concern.

A particular feature of group formation was that in many cases there was a geographical clustering of cases and, typically, a particular doctor, nurse or hospital unit was held responsible. Thus, there was a cluster of deaths of children undergoing cardiac surgery in Bristol that led to the formation of the Bristol Heart Children's Action Group. The Rodney Ledward Victim's Support Group and the Action and Support Group for Medical Victims of Richard Neale were formed by women with failed gynaecological operations in Kent and North Yorkshire respectively. A cluster of parents, who found that body parts of their dead children had been retained without consent by the Royal Liverpool children's hospital, (Alder Hey), formed Parents who have Interred their Children Twice (PITY II). Another example was the Tameside Families Support Group formed by people in Hyde, Greater Manchester, who believed that their relatives had been murdered by the infamous general practitioner, the late Harold Shipman.

The people who consider themselves as victims of a particular drug or medicine, as opposed to a particular practitioner or service provider, are usually more widely dispersed. This may make group formation less likely, unless there is a pre-existing group that can identify a trend among its members. For example, the Haemophilia Society, primarily a support group, now campaigns for compensation for people with haemophilia who have been infected with HIV/AIDS and other diseases through blood transfusions.

When people gave evidence to public enquiries, feelings of grief, distress, isolation and anger were commonly cited. If someone speaks out, and this has a resonance with others, a group can form quite rapidly. This is illustrated in written evidence to the House of Commons Health Select Committee inquiry into adverse clinical incidents (Health Select Committee 1999). The founder member of one victim support group described the inaugural meeting attended by 22 women thus:

Some were far too ill to come to the meeting, yet assured us by telephone of their unconditional support for our group and its objectives . . . most, if not all, of these women did not take legal action, nor did they make a complaint to the hospital where they were treated, since they were (a) too ill and (b) felt they were ‘the only one’. They each felt they would simply be one voice ‘crying in the wilderness’ . . . all of these women have indicated they feel heartened and encouraged by the existence of our Action and Support Group and each is willing and anxious to come forward and tell her story (Written Evidence to the Committee ACI217B).

The quotation underlines the importance of a shared identity but indicates the presence of social entrepreneurs with leadership capability. Although the process of formation of protest groups could not be investigated in detail, it is likely that gossip networks and contact with ‘knowledgeables’ and coverage of an issue by the local or national media, as with the health consumer groups described above, can play an important role (Allsop and Mulcahy 2001).

Protest groups, however, were more likely to view medical practices as paternalistic and oppressive and to see health professionals as people who withheld information and close ranks against patients when questioned. Protest groups were also highly cynical about the motives of pharmaceutical companies, which they perceived as concerned with profit and not with the long-term effects of their products on patients. In contrast, the health consumer groups in the De Montfort study varied in their attitudes. Many had formed collaborative and productive relationships with professionals and some took funding from pharmaceutical companies, generally for limited and specific purposes.

In terms of size, protest groups tend to be smaller and less long-lived than health consumer groups. If redress is obtained, or indeed if an action fails, they may cease to exist. Some may develop into more broadly-based groups, as has been the case in the mental health sector. It is not known if there is networking and learning between protest groups, although this is suggested by the shared discourse, perceptions and forms of action. Moreover, expert advocacy groups such as the Association for the Victims of Medical Accidents provide advice and are closely networked with the mainstream health consumer movement.

Health consumer groups and the policy process

  1. Top of page
  2. Abstract
  3. Introduction
  4. Health consumer groups in the UK
  5. Pain, loss and the formation of protest groups
  6. Health consumer groups and the policy process
  7. Conclusion
  8. Acknowledgements
  9. References

In the introduction, it was argued that groups have mobilised in response to illness, pain and loss, across a number of different countries. Indeed, many interviewees in the De Montfort study referred to international conferences and contacts. However, political culture and national institutions shape the actions and activities undertaken by health consumer groups. In the UK, health consumer groups tend to use conventional political channels. They aim to raise public awareness of issues, and seek publicity through the media. They often work with professionals and professional associations, and through the political process in Westminster and in Whitehall7. The questionnaire data from the De Montfort study showed that contact between health consumer groups and policy makers had increased in frequency in the last three years. Interview data showed extensive contact with civil servants and ministers at various stages in the policy process.

It can be argued that the centralisation of British political institutions – its national, tax-based health service, and a centrally-regulated charity sector – have encouraged the use of conventional channels. In putting pressure on politicians, health consumer groups have pushed on an open door. Both Conservative and Labour administrations have favoured a style of governance that seeks to engage with a range of interests through initiating a range of new participatory practices (Newman 2001 and Daly 2003). In relation to health consumer groups, the De Montfort study showed that civil servants and politicians acknowledged the importance of lay knowledge and expertise in making a contribution to policy development and resource allocation. They have incorporated group representatives in informal networks, on policy development committees, and as members of decision-making bodies. For example, health consumer group representatives were included on committees that drew up the national policy frameworks that established treatment models and standards for a number of conditions such as coronary heart disease and cancer. They are also represented on committees of the National Institute for Clinical Excellence (NICE), a body which examines and recommends cost-effective health technologies for use in the NHS.

There have also been changes in governments’ response to protest groups. First, there are now alternative pathways for dispute resolution for those who perceive themselves as harmed by health professionals (Mulcahy et al. 1999). Second, where groups form and it is accepted that there is wrongdoing, the establishment of an inquiry is a favoured strategy. The aim is to gather information, to provide an audience for those who have suffered, and to learn the lessons for policy. There is a discourse of partnership and resolution. Some of the terminology has been influenced by health consumer groups. For example, the term ‘expert patient’ (also used in US initiatives) has been adopted in plans for services for people with a long-term illness (DOH 2001) and a recent consultation document on clinical negligence, which proposes strategies to provide care and support for victims, is termed Making Amends (DOH 2003). Professional bodies, and even pharmaceutical companies, in pursuit of their own interests, also include patients’ groups and consumers directly in discussions on policy proposals to add legitimacy to their activities.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Health consumer groups in the UK
  5. Pain, loss and the formation of protest groups
  6. Health consumer groups and the policy process
  7. Conclusion
  8. Acknowledgements
  9. References

This paper argues that a broadly-based health consumer movement has developed over the past decade, and it has been based largely on a belief in the validity of lay experience. Health consumer groups have a situated knowledge which draws on personal experience, but incorporates other forms of expertise. The people who represent groups may themselves speak from personal experience but they also legitimate their position through drawing on the experience of their members and this is achieved by operating consultative and participatory practices. Health consumer groups themselves develop both loose networks of connection and more structured alliances, and these are mirrored in policy-level networks. Protest groups can be considered as an important sub-set of health consumer groups, where the attribution of responsibility and blame is more sharply focused on an individual or agency and where there is an emphasis on redress rather than on service change. It is probable that the community of interest between groups has been encouraged by being drawn into the national policy arena and by developing closer links with other interests in health care. Arguably, these changes indicate a health consumer movement.

This, however, says little about the powers of health consumer groups either individually or collectively. It may simply be that inclusion in the policy process leads to incorporation. That is, health consumer groups could simply become actors in a process that provides enhanced legitimacy to governments as they pursue their own larger agenda. It is useful to bring in health consumer groups to curb the monopoly powers of health professionals and to build public support for particular health policies. Apart from seeking alliances with more powerful interests, health consumer groups, whether acting individually or in combination, have few power resources except possibly through the mobilisation of media support.

It could also be argued that the health consumer movement is actually a collection of disparate interests and that involvement in the policy process will exacerbate differences. There are certainly tensions. Health consumer group resources are limited, and time spent on government committees is time not spent on member activities. Some groups and condition areas are closer to policy makers than others. There are insiders and outsiders; some issues are on the agenda and others are not. Leaders may find themselves separated from grass-roots activists with other agendas. Political opportunities for participation may cease to be on offer. Nevertheless, despite these caveats, health care politics have been significantly changed by the presence of a new set of actors within the health policy process.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Health consumer groups in the UK
  5. Pain, loss and the formation of protest groups
  6. Health consumer groups and the policy process
  7. Conclusion
  8. Acknowledgements
  9. References

The De Montfort study was funded by the Economic and Social Research Council Grant Number R000237888. We would also like to thank the people who reviewed the earlier draft of the paper for their comments.

Notes
  • 1

    There was a small overlap (2 groups) between the De Montfort study and the Protest Group study.

  • 2

    Inclusion and exclusion criteria were used in both the De Montfort study and the Protest Group study.

  • 3

    Each organisation was telephoned before the questionnaire was sent out, and the person answering the telephone asked to identify the member of staff who was in charge of policy activity.

  • 4

    Examples of condition-based groups included larger groups such as MIND (National Association of Mental Health) and the Stroke Association, but also smaller groups such as Cancer Black Care and Action on Pre-Eclampsia. Examples of the population-based groups included Help the Aged and Action for Sick Children and of formal alliances, the Genetic Interest Group and the Long-term Medical Conditions Alliance.

  • 5

    Bristol Inquiry: groups that took part in a seminar on patient empowerment undertaken as part of the inquiry were included in the sample.

  • 6

    Groups that gave evidence to phase one of the inquiry, the report of the second phase has yet to be published.

  • 7

    Westminster – refers to Parliament (House of Commons/House of Lords), Whitehall – refers to government departments and central executive institutions such as the Prime Minister's Office.

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  5. Pain, loss and the formation of protest groups
  6. Health consumer groups and the policy process
  7. Conclusion
  8. Acknowledgements
  9. References
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