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 formation||Percentage of Groups||Number of Groups|
|pre-1940|| 3|| 3|
|1941–1960|| 7|| 8|
|1961–1980|| 25|| 29|
|1981-date|| 66|| 77|
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).