Social Science & Medicine 123 (2014) 202e209

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The voluntary sector and health policy: The role of national level health consumer and patients' organisations in the UK Rob Baggott*, Kathryn Jones Health Policy Research Unit, Hugh Aston Building, De Montfort University, Leicester LE1 9BH, UK

a r t i c l e i n f o

a b s t r a c t

Article history: Available online 8 July 2014

This article explores the policy role of health consumer and patients' organisations (HCPOs), an important subset of the UK voluntary health sector. Based on research findings from two surveys, the article examines the activities, resources and contacts of HCPOs. It also assesses their impact on health policy and reform. There is some evidence that HCPOs can influence policy and reform. However, much depends on the alliances they build with other policy actors (including other HCPOs), their resources and leadership. HCPOs seem to have more impact on the detail of policy than on the direction of travel. In addition, there are potentially adverse consequences for HCPOs that do engage with the policy process, which may partly explain why some are wary of such involvement. For example, it is possible that HCPOs can be manipulated by government and other powerful policy actors such as health professionals and the drugs industry. © 2014 Elsevier Ltd. All rights reserved.

Keywords: Health consumer and patients' organisations Voluntary health sector Impact Policy UK

Before the creation of the UK National Health Service (NHS) in 1948, voluntary organisations had a major role in the funding and provision of health services. The NHS did not, however, sound the death knell of the voluntary health sector. People still volunteered to provide health services, raised charitable funds for health causes, and formed campaigning organisations to promote improvements in health services and public health. Indeed, the voluntary sector flourished rather than declined in the era of big government (Alcock, 2011; Lewis, 1999). Furthermore, in the neo-liberal era, its profile rose further. From the late 1970s, successive governments developed policies on statevoluntary sector relationships. These efforts intensified under the New Labour Governments of Blair and Brown, which redefined the voluntary sector as the ‘Third sector’ to include ‘social enterprises’ and mutual organisations (for a definition of social enterprise see DTI, 2002). These governments sought to strengthen partnerships with the sector, build capacity and offer a bigger role in public service planning and provision, a process characterised as ‘hyperactive mainstreaming’ (Kendall, 2000). The current Coalition government, in the context of economic austerity and public sector budget cuts, has emphasised the importance of voluntarism and self-help as part of its ‘Big Society’ rhetoric, suggesting that the

* Corresponding author. E-mail addresses: [email protected] (K. Jones).

(R.

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Baggott),

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rolling back of state provision can be offset by voluntary action. This government has adopted the term ‘Civil Society’ as an even broader articulation of the sector (Cabinet Office, 2010). The UK voluntary health sector is significant. It has been shown that in England alone, over a quarter of charities and social enterprises are active in health and wellbeing, with just under a fifth stating this as their primary focus (Ipsos MORI, 2011). If organisations involved in social care are included, the significance of the voluntary sector is even greater. In 2007 it was estimated that 35,000 third sector organisations in England provided health and/ or social care services at a cost of £12 bn per annum, equivalent to 14% of the total health and social care budget (IFF Research, 2007). Similarly, the voluntary sectors in Scotland, Wales and Northern Ireland are extremely important contributors to health and social care in these parts of the UK (Baggott, 2013). The merits and potential contribution of the voluntary health sector have been acknowledged by several high profile reports on health policy in the past decade (for example: the review of public health by Wanless, 2004; the Darzi Review of the NHS (Cm 7432, 2008); and the Marmot Review of Health Inequalities, 2010). These and other reports (see for example, Curry et al., 2011; House of Lords Select Committee on Science and Technology, 2011), identified the sector's various roles: promoting self-help and selfcare; identifying health needs, trends and threats; ensuring that user and public perspectives informed service planning and delivery; campaigning and lobbying on health issues; giving voice to marginalised and disadvantaged groups; preventing disease and

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promoting health through the provision of information; identifying and overcoming barriers to disease prevention and health promotion (such as social attitudes, cultural norms and/or economic disincentives); facilitating the integration of services (by interacting with multiple agencies); providing services that are more flexible and suited to users' needs; harnessing and mobilising community resources and assets; linking into wider voluntary sector networks that promote health; and raising funds to facilitate and undertake research. Contemporary policy in England, articulating a greater role for the voluntary health sector, has its roots in the 1960s (in the form of Ministry of Health guidance and a statutory grants scheme under Section 64 of the Health Services and Public Health Act 1968). More recently, the policy framework has become more extensive and detailed, and has included commitments to strengthen the sector's role in service provision, its participation in partnerships and collaboration; and its involvement in the policy process (Wyatt, 2002; Cm 6374, 2004; Cm 6737, 2006, Cm 8134, 2010). Governments in the other countries of the UK have also introduced their own policies to promote and involve the voluntary health sector (Baggott, 2013). Given the apparent rise of voluntary health organisations in recent decades, and their engagement with the policy process, one would expect them to be a key focus for those studying health and social policy. While there certainly has been greater academic interest over the past decade or so (and not just in the UK, as we shall see later), this has perhaps been less than expected. Moreover, many studies focus on the internal features, structures and activities of these organisations, their interaction with members and service users, and relationships with health professionals. Although these are important, there appears to have been a relative neglect of their involvement and influence in the policy process, despite efforts to increase voluntary sector involvement in this arena (Baggott, 2013). This paper seeks to explore the policy role of voluntary health organisations in the UK over the past two decades, focusing mainly on England. It examines their particular role in seeking to promote and represent the interests of patients, users and carers. It addresses four areas: conceptual issues and definitions; creation, policy focus and resources; contact with the policy process, including other health policy stakeholders; and finally, impact on policy. The article draws on a landmark study of UK health consumer and patients' organisations (HCPOs e see below for definition) by (Baggott et al., 2005), in particular a questionnaire survey conducted in 1999 (hereafter, the 1999 survey), and a more recent survey undertaken in 2010 (hereafter, the 2010 survey) which explored the aims and activities of HCPOs and their involvement in public health campaigning and lobbying (Baggott and Jones, 2011). 1. Methods The 1999 survey used a postal questionnaire to map the characteristics and activities of HCPOs working in and across a number of condition areas. It sought information on their internal structures, aims, activities and the type and frequency of contact with policy makers and health policy stakeholders. It was sent in Autumn 1999 to 243 organisations, 57 of which were subsequently excluded as they did not meet the inclusion criteria (response rate 66%, n ¼ 123). A fuller discussion of the research methods, including follow-up interviews, is given in (Baggott et al., 2005). Subsequently, in the summer of 2010, 312 HCPOs were invited to complete an online structured questionnaire, hosted by Speedsurvey. Organisations received an email request and link to the survey, responses were downloaded and transferred to SPSS. Two followup emails were sent, achieving a response rate of 39% (n ¼ 122).

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It should be noted that the later survey used a different sampling method. Unlike the former, it did not focus on HCPOs in specific condition areas. Moreover, organisations were identified through membership lists provided on the websites of several large alliance organisations (a more systematic approach than was previously possible). However, as will become clear, the different methods produced similar results. 2. Conceptual and definitional issues In its widest sense the voluntary health sector includes several types of organisation: Single issue campaign groups seeking to change policy and practice (on issues such as smoking, food policy, alcohol abuse, pollution); patients', carers' and service users' organisations; groups representing the wider public, or a section of the population, such as older people or ethnic groups; protest groups; voluntary service providers; umbrella groups and alliances; research charities; philanthropic organisations and foundations; and social enterprises, co-operatives and mutual organisations. Some organisations fall into more than one category. For example, patients' organisations may fund research, provide services, and engage in single issue campaigns. It is impossible to focus on all these different types of group within the confines of this article. Instead, we concentrate on an important subset of organisations within the voluntary health sector, those that seek to promote and/or represent the interests of users and/or carers in the health arena. We initially termed these ‘health consumer groups’ (Baggott et al., 2005). Subsequently, following efforts to devise a broader term for use in the analysis of patient, user and carer organisations across several European countries (Baggott and Forster, 2008) the term ‘health consumer and patients’ organisations' (HCPOs) was adopted, since clarified as ‘voluntary sector organisations that seek to promote and/or represent the interests of patients, users, carers, and the wider public in the health policy arena’ (Baggott and Jones, 2011). Such definitions are open to challenge because of the contested nature of terms such as patients, users, consumers, citizens and the public. Some recoil from the word ‘consumer’, because it implies a commercial or customer-oriented relationship with services (Long, 1999). Others, however, (see, Williamson, 1992) argue that ‘consumer’ captures an active form of citizenship and is capable of representing a broader constituency of interest, not merely the narrow realm of individual customer preferences and choices. As Mold (2010) notes, ‘consumer’ has been interpreted in different ways and this has shaped the discourse around public service reform (see also Clarke et al., 2007; O'Hara, 2013). There has also been debate about the appropriateness of the term ‘patient’. For many, it implies passivity, weakness and sickness, and for this reason has been challenged, notably in the arenas of disability, maternity and mental health. Some have adopted their own terminology, for example, some mental health groups prefer the term ‘survivors’ (Crossley, 2006). A further point to consider is whether HCPOs constitute a health social movement, defined by Brown and Zavestoki (2004, p.679) as ‘collective challenges to medical policy, public health policy and politics, belief systems, research and practice which include an array of formal and informal organisations, supporters, networks of cooperation and media’. There is considerable ambivalence in the literature on this question. Some see HCPOs contributing to a wider patient or health consumer movement (Allsop et al., 2004; Borkman and Munn-Giddings, 2008; Scambler and Kelleher, 2006; Williamson, 2008). In particular, they do this by developing expertise and knowledge, identifying new issues and challenging the status quo (on issues such as patient consent, rights to information and explicit standards in healthcare). Furthermore, some

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HCPOs may challenge dominant medical models of disease and shape the identity of those with particular conditions (see for example, Chamak, 2008; Rabeharisoa, 2006). However, the health social movement is emergent, immature or incomplete rather than fully fledged. While patients, users and consumers have challenged health professionals, managers and policy makers in important ways, they remain in a relatively weak position within health policy and clinical communities (Hogg, 1999, 2009; Salter, 2003). Moreover, there is a high degree of fragmentation and division within this emerging movement which may have impeded its progress (Huyard, 2009; Williamson, 2008 e though note Crossley's (2006) argument that health social movements should be understood as a field of contention and not as a unified entity). 3. Creation, policy focus and resources The very creation of HCPOs is a political phenomenon, signalling some previously unaddressed need or problem (putting aside for the moment the existence of ‘astroturf’ groups created or funded by other interests e see below). Although accurate figures are hard to come by, it appears that there has been a substantial growth in HCPOs in the last three decades, reflecting broader trends across the voluntary sector (Alcock, 2011). Our initial study in 1999 found that two-thirds of HCPOs had formed after 1980 and over 90% after 1960, (though the extent to which new organisations supersede older, defunct ones is unknown). This study also identified three key types of organisation, those that have coalesced around particular conditions (condition-based groups); population-based groups relating to the health of specific population groups (e.g.: ethnic groups, children or older people) and formal alliances of groups within condition areas or across broader sectors of health and social care. The creation of HCPOs was encouraged within a favourable context which included: greater acknowledgement of patients' rights; increased public availability of health knowledge and information; decreased deference to professional authority; more extensive media coverage of health issues and ‘scandals’; an acknowledgement by professions and policy makers of the need to understand services from the perspective of patients and the public; increasing emphasis by policy makers on choice, consumerism and markets in healthcare, and policy makers' focus on voluntarism as an adjunct to, or a substitute for, public services. Although these factors encouraged the formation and growth of HCPOs, the importance of specific triggers in their creation is more difficult to evaluate. As noted elsewhere (Allsop et al., 2004), prevailing ideologies in particular periods may be relevant to the formation of HCPOs. In the Victorian period and up to the creation of the NHS, philanthropy appears to have been a major driver. In the post war period, their formation was allied closely to the pursuit of rights within the state system. Also in this era the identification of ‘gaps’ in welfare state provision encouraged self-help activities and campaigns to extend state services to meet these needs. An important catalyst for the formation of such organisations is ‘pain and loss’. Jennings (1999) drew attention to how life events, such as illness, injury and death, can lead to collective action. However, other factors, conductive to formation, must also be in place. For example, media coverage of particular issues or medical conditions has prompted the formation and subsequent growth of HCPOs (e.g. organisations representing people who believe they have been harmed by vaccines). Organisations may also be encouraged to form where events cluster (a number of people affected within a relatively short space of time), where there is a clear focus for campaigning (e.g. an authority or institution which can be blamed for shortcomings), and where barriers to interaction are low. It is sometimes the case that medical conditions by their

very nature can inhibit face-to-face interaction (Small and Rhodes, 2000), though this may be offset by new communication technologies. 3.1. Policy focus While HCPOs rated providing advice and support for members as their most important activity across the two surveys, their interest in policy issues was also evident (Table 1). In both surveys a majority identified influencing national policy as ‘very important’, while a significant minority identified influencing local policy as ‘very important’. In addition, the 2010 survey found that just over three quarters (76%) stated that influencing UK national policy was ‘very or fairly important’, while 64% reported that influencing local and regional policy was ‘very or fairly important’. In the 1999 survey, 82% of HCPOs placed some importance on influencing national policy while 63% placed some importance on influencing local policy. The higher priority given to national policy is perhaps unsurprising given that both samples consisted of national organisations. It appears that HCPOs are pushed and/or pulled into policy work. Their own interest arises where issues requiring some form of redress or solution are identified, and they seek to reform services. They may also be pulled into policy making following requests from government bodies and other healthcare stakeholders. This provides opportunities to put forward the views of patients, users and carers. However, it should be recognised that involvement in policy has implications for HCPOs, both in terms of opportunities and cost. Focusing on policy may mean fewer resources for direct patient support. Participation in debates about policy and priorities may lead to internal conflicts around agendas and priorities. Furthermore, developing relationships with other healthcare stakeholders may lead to accusations of compromise, cooption and bias. The earlier survey did not address the relative importance of different areas of campaigning. However, data from the subsequent interviews revealed that the overwhelming focus of attention was on issues of access to care and treatment, patient experience and patient support. In the 2010 survey, HCPOs were asked to rate the importance of different areas of campaigning and lobbying. Issues of access to care and treatment, patient support and patients' experiences continued to be their key concern. Even so, for a substantial minority of groups (23%), public health was their current campaigning/lobbying priority (Baggott and Jones, 2011). 3.2. Resources HCPOs are not well-resourced. (Baggott et al., 2005) found that over half of them had an annual income of £100,000 or less in 1999. Table 1 Activities undertaken by HCPOs, rated by importance (All groups).

Providing advice/support Providing information Publicity/raising awareness Influencing national policya Influencing local policyb a

1999 n ¼ 123 % Of groups rating activities as ‘very important’ (rank)

2010 n ¼ 122 % Of groups rating activities as ‘very important’ (rank)

88 86 74 61 28

93 91 78 55 36

(1) (2) (3) (4) (13)

(1) (2) (3) (7) (12)

In the 2010 survey the question asked about ‘influencing UK-wide policy’. In the 2010 survey the question asked about ‘influencing local/regional policy’. Source: Questionnaire data sets 1999, 2010. b

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In contrast, a small proportion (6%) had over £10 m per annum. The level of financial resources available is an important factor in building capacity for policy activity (such as the ability to employ specialist policy staff), and has a bearing on their influence over policy. Indeed, a large majority of HCPOs (79%) stated that a lack of funds was a key factor that limited involvement in the policy process (Baggott et al., 2005). The majority of HCPOs in the 1999 survey had a membership structure (92%). This could include institutional as well as individual members. Interaction with patients, users and carers (who may or may not be members) provides HCPOs with an understanding of the experience of those in day to day contact with the health service. It is this experiential knowledge that provides legitimacy and credibility for their policy activity, which is recognised by other policy actors. Larger HCPOs (such as Arthritis Care with 12,000 members in 2012) usually have a formal structure and permanent, professional staff. In the 1999 survey, around half of HCPOs had a branch structure (Baggott et al., 2005). This was often seen as a source of strength, giving organisations a strong local identity and presence. Where branches are represented in national decision making structures, national organisations can make stronger representative claims. However, there is a downside. Branch structures, particularly when autonomous, can be a source of conflict. For example, in recent years the Alzheimer's Society has faced internal discord over plans to close branches and impose a new structure (Plummer, 2010). Furthermore, where an organisation is divided on a policy issue, this can undermine its credibility to speak on behalf of members and people with a particular condition. Where HCPOs are formed by people with particular conditions rather than for people with particular conditions, this suggests that previously marginalised voices are now being heard in the policy process. However, there is a perception that HCPOs have tended to be dominated by white, middle class people (Baggott et al., 2005). These are often characterised (somewhat sceptically) as ‘the usual suspects’, people with the education, skills, resources and time to get involved. Ethnic groups tend to be under-represented, though hard data on the extent of this is lacking (Avis et al., 2008). Other ‘hard to reach’ social groups, such as young people, also seem to be under-represented. This causes problems for the HCPOs. They themselves acknowledge that a failure to include ethnic minorities, younger people and other social groups may undermine their legitimacy in speaking for all patients with a particular condition (Baggott et al, 2005). While larger and better-resourced organisations have greater potential for influence, such variation may be accentuated by political inequalities. HCPOs operating on high profile issues which attract public sympathy and favourable media coverage (e.g. breast cancer or serious childhood illnesses) are likely to derive a triple dividend: publicity for their cause, funding (from government, the public and corporate donations), and greater legitimacy in the eyes of policy makers. Conversely, those which champion less fashionable or unpopular issues (such as standards of prison healthcare) are likely to lose out. Meanwhile, there is an assumption that established charities with elite patronage are more highly regarded than those that take a more radical approach, focusing on the environmental and social determinants of illness. Even so, smaller and less well resourced ‘outsider’ HCPOs have been successful in challenging attitudes, gaining access to the policy process, and exerting some influence (Baggott et al., 2005). Moreover in practice, even better resourced and well-connected organisations tend to adopt a dual strategy, using both elite ‘insider’ contacts with executive decision makers alongside efforts to lobby Parliament and influence the media (Baggott et al., 2005). Finally, it should be noted that a potential solution to the political disadvantages of both the inequality and poverty of resources

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in the HCPO sector has been the formation of alliances, which often take on a policy role on behalf of members. Organisations acknowledge the importance of working together in alliances, as a means of pooling expertise, resources and strengthening their political leverage (Jones, 2007). Not surprisingly then, HCPOs reported regular contact with other organisations in the sector. In the 2010 Survey, 63% had ‘at least quarterly contact’ with other user/carer organisations and 70% ‘at least quarterly contact’ with other voluntary organisations. In the 1999 survey, levels of contact were even higher, with over three quarters of HCPOs (77%) having ‘at least quarterly contact’ with other user/carer organisations. 4. Contact with policy actors Given the government's broader involvement agenda, and their own policy interests, it appears that HCPOs have maintained significant levels of contact with key decision makers in recent years (Table 2). In 2010 a third (34%) reported ‘at least quarterly contact’ with Department of Health (DH) ministers, and two-fifths (39%) with DH civil servants. Half (49%) had ‘at least quarterly contact’ with MPs, while 32% reported this frequency of contact with members of the House of Lords. HCPOs are active in Parliament, building links with MPs who have specific interests in health matters and giving evidence to Parliamentary Committees (Baggott et al., 2005). They have sought to influence government legislation and in some cases promoted new legislation themselves. A substantial proportion, however, have little or no interaction with policy makers, for example in the 2010 survey, 38% reported no contact with DH Ministers in previous three years (33% in 1999), 39%, reported no contact with DH civil servants (28% in 1999). National policy makers have sought to involve HCPOs in the policy process. This activity increased in the 1990s, for example the DH provided ‘Section 64’ funding for an alliance organisation, the Patients Forum, to support more effective representation of patients' and carers' interests at national level. This organisation has since been superseded by National Voices (see below). In 2004 a strategic partnership agreement was drawn up between the DH and the voluntary health sector (DH, 2004). This led to the establishment of a National Strategic Partnership Forum to oversee its implementation, on which HCPOs were represented. Subsequently, in 2009, the DH introduced a strategic partners' programme, which provided funding for a small number of national voluntary organisations to act as channel of communication with the wider voluntary sector, including HCPOs. Furthermore, some HCPOs,

Table 2 HCPOs reporting ‘at least quarterly contact’ with policy actors.

Prime Minister's Office Department of Health Ministers Department of Health Civil Servants Other Departmental Ministers Other Departmental Civil Servants MPs Peers Media NHS managers' organisations Doctors' organisations Other professional organisations Other user/carer organisations Other voluntary sector organisations Pharmaceutical industry European Union institutions

1999% (n)

2010% (n)

8 30 48 16 22 a a 77 e 48 71 77 77 45 19

5 34 39 21 18 49 32 66 31 38 56 63 70 35 19

(10) (37) (59) (20) (27)

(95) (59) (87) (94) (94) (55) (23)

(6) (42) (47) (25) (22) (60) (39) (80) (38) (46) (68) (77) (85) (43) (23)

a In the 1999 survey, 45% reported that they had contact with Parliament (MPs and peers) at least quarterly. Source: Questionnaire data sets 1999, 2010.

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Table 3 Examples of HCPO influence.a Issue

Significant policy actorsb

Expert patients programme  2001 Waiving of prescription charges for cancer patients e 2009 Smoking ban in public places e 2006e2007

HCPOs, health professionals, Ministers and civil servants HCPOs, social welfare organisations, MPs and Peers, Ministers and civil servants, the media HCPOs, anti-smoking groups, health professionals, MPs and peers, HCPOs, MPs and peers, ministers and civil servants, the media HCPOs, health professionals, MPs and peers, ministers and civil servants, the media HCPOs, health professionals and experts, MPs and Peers, ministers and civil servants, the media HCPOs, health professionals and experts, MPs and Peers

Carers' rights legislation e 2000 onwards Phase out of Mixed-sex wards e 1997 onwards Healthcare infections e new policies on monitoring and prevention e ongoing Health and Social Care Act 2012 e amendments to the legislation strengthening patient and public involvement Breast cancer screening e extension to age groups covered e ongoing Measures to improve health service standards e ongoing Choice in maternity services e ongoing Older people: dignity and anti-discrimination in care e ongoing a b

Other policy actors Health professionals Ministers and civil servants, the media Health professionals Health professionals

Ministers and civil servants, the media

HCPOs, health professionals and experts, MPs and Peers, ministers and civil servants, the media HCPOs, health professionals, regulators, MPs and Peers, ministers and civil servants, the media HCPOs, women's organisations, health professionals, MPs and Peers, ministers and civil servants, the media HCPOs, older people's organisations, health professionals, MPs and Peers, ministers and civil servants, regulators, the media

While policy may have changed, delays in implementation may mean issues are still on-going. Those deemed to have made a significant contribution to the policy process (i.e.: shaping the agenda, developing proposals, or making a decision).

alongside other voluntary health organisations, were appointed to the Department's National Stakeholder Forum, on which trade unions, professional associations and NHS bodies were also represented. In addition to involvement in high-level strategic fora, HCPOs have been involved in consultations and making representations on specific issues within their area of expertise. During the period 2010e12, HCPOs were drawn into formal consultations on the Health and Social Care Bill. The Bill was seen by many commentators as a radical overhaul of the NHS in England, opening up NHS services to private and independent sector providers, fundamentally reorganising the commissioning of health services, shifting responsibilities for delivering health outcomes away from ministers to the NHS itself and changing the way patients and the public were involved in decision making. Due to widespread disquiet about the legislation during its progress through Parliament, the government established the NHS Future Forum to listen and report back on concerns. In all, eight representatives of the voluntary health sector were represented on the 45-member Forum, though only two of these were drawn from HCPOs (www.healthandcare.dh.gov.uk). HCPOs have also contended with major changes in the policy process, for example devolution. In the UK, Wales, Scotland and Northern Ireland have been given powers of self-government, with more scope to shape their health policies and services in a distinctive way (Greer, 2009). This appears to have some effect, with 64% of HCPOs in the 2010 survey stating that influencing policy in the UK devolved administrations' in Scotland, Wales and Northern Ireland was ‘very important’ or ‘fairly important’. Another key finding related to the European dimension of health policy. Across the two surveys, the proportion of HCPOs reporting quarterly contact was the same (19%). However, in the 1999 survey, two thirds of HCPOs reported no contact with EU bodies in the previous 3 years, whereas in 2010 this proportion was lower (at 52%), indicating that contact with EU decision makers may be becoming more important. This perhaps reflects the growing influence of the EU in relation to health policy, particularly on issues such as crossborder health issues and public health (where increased opportunities to participate have been reported by some organisations e Baggott and Jones, 2011). Working at EU level and with devolved

governments has given HCPOs opportunities to influence policy. However, it has also placed an additional strain on their already stretched resources. 5. Professionals and other health interests Professionals are often instrumental in establishing HCPOs and are active within them (Baggott et al., 2005; Huyard, 2009). Professionals offer medical expertise, provide advice on the latest interventions, help commission and carry out research, and are often involved in HCPOs' internal governance. In the 1999 survey, over two thirds of HCPOs stated that healthcare professionals were members of their organisation. In most cases, it appears that HCPOs and health professionals develop mutually beneficial contacts, for example collaborating on research or jointly calling for service improvements. In the 2010 survey, 38% reported ‘at least quarterly’ contact with doctors' organisations, with 56% reporting ‘at least quarterly’ contact with other professional organisations. However, a small minority are suspicious of health professionals and seek to distance themselves from them. In the 2010 survey 27% of HCPOs had no contact with medical organisations, and 20% had no contact with other professional organisations. There are many possible reasons for this. These organisations may lack knowledge and resources to develop such links; or may actively choose to avoid such relationships, perhaps fearing domination by professionals and their clinical perspectives. HCPOs' relationships with commercial organisations, notably the pharmaceutical industry, have attracted a great deal of attention in recent years. The financial weakness of the former creates a potential dependence on the latter. A number of previously unknown links between companies and HCPOs have been exposed in the media, leading to calls for more openness (Boseley, 2007; Salter, 2008). This is particularly in light of concerns about ‘astroturf’ groups (HCPOs established by industry or which receive substantial industry support, in order to achieve public support for its agenda). Also, there are suspicions that HCPOs are too eager to demand access to new treatments, despite doubts about the efficacy of new drugs (Goldacre, 2012). Yet it is interesting to note that the percentage of HCPOs which reported no contact in the past three years

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with the industry was similar in both surveys (36% in 2010; 38% in 1999). In addition, the proportion reporting ‘at least quarterly contact’ with the pharmaceutical industry was lower in 2010 compared with 1999 (at 35% compared with 45%). Nonetheless many HCPOs have contact with industry, and accept funding from this source. Although aware of potential conflicts of interest, they believe that there are areas of mutual interest which make this legitimate. Nonetheless, while some HCPOs insist on full disclosure of funding sources and establish protocols setting out how these funds are spent, others adopt a minimalist approach to transparency about their relationship with the drugs industry (Jones, 2008). Such disquiet is not confined to the UK (see Hemminki et al., 2010; Sheldon, 2010). 6. Influence over policy Although HCPOs have pursued and responded to agendas relating to health policy and reform, we know little about their actual influence. Larger organisations, major national charities such as Mind, Age UK, Carers UK, British Heart Foundation, National Childbirth Trust, Macmillan Cancer Support, and Arthritis Care, appear to be among the most influential by repute (Baggott et al., 2005). However, UK studies suggest that most HCPOs have meagre financial resources and little political leverage, and have rarely achieved significant influence over policy on their own (Baggott et al., 2005; Wood, 2000). When examining influence one has to be clear about what area or aspect of policy they are seeking to affect. HCPOs seek to influence the evidence and information base for policy-making, policy frameworks and assumptions, policy agendas, policy proposals, legislation, as well as the implementation, monitoring and reviewing of policies. In addition other factors such as the policy context and the agenda of other actors need to be taken into account. A systematic study of influence across these various dimensions and different policy issues, may help judge impact more effectively. However, in the absence of such studies across the entire health policy sector, there is a heavy reliance on a case study approach. Table 3 lists policy issues where HCPOs appear to have exerted some influence. However, it is obvious that HCPOs are only one of several policy actors involved, and unpicking the nature and extent of their specific influence is extremely difficult. HCPOs can exercise influence as part of broader coalitions involving other HCPOs, more powerful actors (e.g.: industry, professions, and in some cases, single issue campaigning groups). Other important players in successful coalitions of interest include individual politicians and the media. However, participation in such coalitions often means compromising with other actors and running with their agenda. Most HCPOs are weak in the face of government authority and power. Their major resource is legitimacy and the ability to represent the experience of patients, users and carers. Governments have found this useful when challenging the power of other healthcare stakeholders and this has created opportunities for HCPOs to gain access to policy-makers. However government has also manipulated HCPOs into supporting agendas that they later regret. This can ultimately damage their standing with members, patients and users and undermines their credibility to speak independently on their behalf. Meanwhile, the health consumer and patients' movement, discussed earlier, has been hampered by several problems, including poor leadership, weak central organisation and insufficient coordination, low political leverage, meagre financial resources. As noted above alliance organisations have been formed in the past to coordinate activities. Further efforts have made to address strengthen collaboration between HCPOs in recent years, such as creation of a national ‘umbrella’ group for England, National Voices,

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in 2008. This body is a coalition of more than 200 organisations and its formation was supported by the Department of Health. It has four main areas of work: advocacy for patients, users and carers; work with government, the NHS, politicians, professionals and regulators to improve services and strengthen the voice of service users; hosting and supporting a service user panel, bringing together a wide range of current service users; and providing information, support and advice to its members enabling them to have opportunities to influence the health and social care agenda (National Voices, 2013). National Voices, and other HCPOs, were very active in the debates about recent reforms of the NHS in England. For example, during the passage of the 2012 Health and Social Care Act, National Voices co-ordinated the ‘9 Big Shouts Campaign’ on behalf of member organisations and the wider voluntary health sector (National Voices, 2011). The campaign focused on issues around patient involvement in commissioning, patient and public involvement structures, patient information, integrated health and social care services, health inequalities and a legal duty of candour on healthcare providers, among others, and achieved some success. For example, the bill was amended to strengthen new patient and public involvement structures and to give patients statutory rights to be involved in decisions about their own care (Baggott, 2013). Much, however, will depend on how these measures are implemented in practice. 7. Conclusion Certainly, as far as national organisations are concerned, there is much continuity in the importance attached to particular functions, notably providing advice, support and information and raising awareness. HCPOs have also maintained their interest in building relationships with other stakeholders and in seeking to influence policy-making. However, changes in the health policy context and in governance structures appear to have prompted adjustments in the focus of their activities. In particular, there are signs of a greater interest in influencing devolved assemblies in the light of devolution and, in some respects, more acknowledgment of the European dimension of health policy. HCPOs have also been influenced by the broader policy context. There has been explicit political encouragement, namely support for the Third Sector by the Blair and Brown Governments and the Big Society theme of Cameron's Coalition Government. There has also been endorsement in these quarters for the role of voluntary organisations as advocates as well as suppliers of services. This has strengthened the legitimacy of the voluntary health sector and raised its profile as a policy actor. However, government policies can also be seen as undermining the sector. The greater emphasis placed on service provision has sometimes created tensions with the advocacy role of voluntary organisations, in the health field and elsewhere (Curry et al., 2011; Lewis, 2005). Moreover, the Big Society policy has struggled in an era of budget cuts, threatening the voluntary sector's capacity (Baggott and Jones, 2014). Voluntary health organisations may not be as badly affected as some other groups (Bhati and Heywood, 2013), but they nonetheless face financial constraints in a difficult economic climate. It is difficult to claim that HCPOs are part of a radically new system of participatory governance. They do engage with patients, users and carers and seek to represent them in the policy process and in service delivery (through participation in planning, monitoring and evaluation). But their representative role is open to challenge. Many are not inclusive and do not involve the vast majority of ‘eligible’ patients. Activists remain in a small minority. Moreover, there is significant professionalization of HCPOs, both in terms of management structure and health professional

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involvement in the organisation's activity. Even so, larger organisations can be very effective advocates for their constituency, while some of the smaller HCPOs that are for ‘patients only’, lack resources and are often ineffective within the policy process. Although HCPOs have become more prominent and significant players in the health policy community in recent years, and have maintained regular contact with decision-makers and other heath policy stakeholders, they remain considerably weaker than some of the more established interest groups, such as professional organisations and commercial interests. With the exception of the larger HCPOs perhaps, organisations representing patients, users and carers tend to lack leverage over government. They can exert influence, however, especially when working in concert with other interests and when focusing on matters of policy detail rather than overall strategy. That government wishes to use HCPOs to legitimise policies, to demonstrate that it is in dialogue with service users, and to deliver services on behalf of (and instead of) the state, has enabled the latter to secure access to the policy process, giving them opportunities to influence. Nonetheless, it remains true that many HCPOs lack the political clout to take full advantage of these opportunities. In addition, constant changes in policy and in statutory involvement structures, while promising greater opportunities to exert influence, may have in fact weakened their position as the voice of patients, users and carers. Moreover, the field remains highly fragmented, enabling other healthcare actors, including government, to continue to divide and rule. The UK is not a unique case. They key findings of our research have been replicated in similar studies in other countries (Lofgren et al., 2011). This body of work includes academic studies and reports on European countries (see for example Norway and Denmark (Opedal et al., 2012), Finland (Toiviainen et al., 2010), the Netherlands (van Bovenkamp et al., 2010), Austria (Forster et al., 2011) and Germany (Geissler, 2011) and the Americas (United States (Fox and Lambertson, 2011; Nunez Daw et al., 2011), Canada (Church and Armstrong, 2011), and Latin America (Valenzuela and Zamaora, 2011; Durstine, 2009; IAPO, 2009; Stockholm Network, 2013). Together these demonstrate increasing HCPO activity and involvement in policy processes. They also show that there is greater acknowledgement of the role of HCPOs among other policy actors, including government, the professions and the private health sector (including the pharmaceutical industry). However, they also indicate that relative to these established actors, HCPOs remain relatively weak. Furthermore, these studies demonstrate variation between countries in the extent to which HCPOs are engaged in the policy process and their level of influence (see Lofgren et al., 2011; Stockholm Network, 2013). A further theme of this literature, echoed in our paper, is that in future there must be a greater effort to systematically evaluate the impact of HCPOs within the policy process, within and across different jurisdictions. Lessons learnt from involvement in healthcare reforms in one setting may provide impetus in others and may be a way to strengthening the voice of the sector as a whole. Acknowledgements Professor Martyn Denscombe, De Montfort University Faculty of Business and Law for assistance with 2010 Online Survey; ESRC Grant Number R000237888 for the funding of the 1999 survey. References Alcock, P., 2011. Voluntary action, new labour and the third sector. In: Hilton, M., McKay, J. (Eds.), The Ages of Voluntarism. OUP, Oxford, pp. 158e179. Allsop, J., Jones, K., Baggott, R., 2004. Health consumer groups in the UK: a new social movement? Soc. Health Illn. 26 (6), 737e756.

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