Abstract
Introduction Joseph Heller’s Catch‐22 is regularly invoked to critique the irrationality inherent in supposedly rational bureaucracy. We explore a Catch‐22 for policy concerning public involvement in English health care: you have to be ordinary to represent the community effectively, but, if you are ordinary, you cannot effectively represent your community.
The nature of public participation groups Starting with community health councils, we trace government policy about involving local people in health care, up to the current arrangements for local involvement networks and show how the above Catch‐22 works. We do this in two principal ways. First, by an analysis of some of the unrecognized paradoxes in current government policies designed to populate health‐care participation groups and second, by providing a series of narrative vignettes, drawn from our own experiences of working in such groups, which illustrate the nature of the dilemmas members face.
Conclusions Our proposal to get out of the worst of the Catch‐22 for effective public involvement groups is (paradoxically) to suggest focusing less on effectiveness, or more precisely, focusing less on those conventional, managerially defined notions of effectiveness that are now pretty much taken for granted within public services. This is because, if bodies like LINks are to do more than provide unthreatening, homogenous and tokenistic public perspectives, they need to be given space and time to pursue their own agendas.
Keywords: community health councils, community representation, local involvement networks, patient forums, patient involvement
Introduction
From the earliest days of the National Health Service (NHS) in England, there have been policies for the formal recognition of the public’s voice in health care. Initially, this was through the appointment of lay representatives on various hospital boards, 1 but following the first major NHS reorganization in 1974, separate bodies known as community health councils (CHCs) were established, explicitly to give patients a voice, monitor local services and act as NHS ‘watchdog’ on behalf of local communities. 2 CHCs were intended to consist of ordinary people who lived in the locality. Their role involved visiting health‐care premises, taking up issues on behalf of local people (for example, complaints) and commenting on formal consultation documents. CHC members themselves were unpaid, although each council was supported by a small group of salaried officials chosen and appointed by the members. Thus, in spite of concerns about the consistency and effectiveness of their services (and, indeed, about the adequacy of the funding they received 2 ), CHCs, at their best, were able to provide what amounted to a one‐stop‐shop, dealing with such matters as scrutinizing local services, giving information and advice and lending assistance to complainants. 3 Furthermore, CHCs were the only official community representatives who local health authorities were obliged to consult on significant changes and they had powers to refer certain health authority decisions to the Secretary of State if members objected to proposals. 4
These policy arrangements from 1974 remained in force, with relatively minor amendment, until 2003, even though health care itself had undergone radical changes over this period. Not only had the wider NHS been reorganized several times, debate about appropriate forms of public, patient and customer involvement had moved on apace, especially, perhaps, when the rhetoric of health marketization commenced in the early 1990s, followed by the New Labour discourse of responsive public services. 5 , 6 , 7 Indeed, during the period from 1974 to the 1990s, a wide diversity of initiatives had emerged, greatly extending debates about the purposes of involvement and multiplying the ways in which diverse voices could be heard. It is hardly surprising, then, that by the late 1990s, CHCs themselves were calling for their roles to be updated – after years of stasis, they had found themselves to be just one of many voices representing the public 8 and had started to appear, even to some within the movement, as parochial and quirky, if not entirely irrelevant. 9 , 10
However, CHCs in England were never updated; instead, they were abolished: in December 2003, 572 patient forums (forums hereafter) replaced 185 CHCs. 3 , 11 Forums were similar to CHCs in that they consisted of groups of local people who were consulted over how local services were to be run. But they did not enjoy the full statutory powers and responsibilities of CHCs – in fact, a range of other bodies had to be created to fulfil CHCs’ one‐stop‐shop roles, 3 , 12 although this multiplication of bodies was also, in part, a response to the perceived inadequacies in the way that CHCs had dealt with their wide range of roles and responsibilities. But forums are not the end of the story. As things turned out, they did not have a chance to develop their role and establish effective working relationships. A Stronger Local Voice 13 announced their abolition in 2008 and replacement by local authority‐run Local Involvement Networks (LINks).
How are we to interpret this volatility in the official structures for public involvement in health care, especially given the contrast with the 29 years of relative stability? It may well be, in part, that such a rapid series of changes is symptomatic of New Labour’s broader quest to modernize public services – a quest that seems to necessitate near‐incessant structural revolution throughout the public sector to demonstrate that things are happening. Indeed, part of the official rationale for the creation of LINks was to align them with local health and social care economies, rather than with individual NHS providers as had been the case with CHCs and forums. 13 Furthermore, in this specific case, there were elements of almost indecent haste in the formation of forums that led to weaknesses in the arrangements made to support them, such that forums, as Hogg 3 and Warwick 12 argue, ‘were not seen as effective replacements for CHCs’. Nevertheless, in our view, the recent turbulence in the structural arrangements for public involvement in health care also has deeper roots: it is connected to a fundamental difficulty with current policy aspirations for public involvement. While we accept that other factors may also be significant, we argue that this recent spate of structural changes can be interpreted as a series of iterations aimed at improving the performance of public involvement – iterations that have all be deemed unsuccessful – so far.
Until the mid‐1990s, as Pickard puts it, ‘CHCs were left to go about [their] task [of representing the public interest] in their own way, developing their own approach and priorities’. 9 While even their supporters acknowledged performance could be highly variable, 10 as Pickard implies, governments seemed content to tolerate this state of affairs. However, once performance management began to be applied to CHCs and to their successor bodies, a more uniform notion of effectiveness became what was expected. The variety of policy iterations in the last few years, therefore, can be interpreted as reflections of the fact that none of the structures yet tried has achieved the sort of consistency in effectiveness that government now requires. Thus, the aim of this review is to suggest some reasons why the performance management of public involvement in health care failed in the past and to suggest lessons from the history of CHCs and forums to assist with the emergence of LINks.
First, we draw on a critical analysis of official documents and publicity leaflets relating to the establishment of forums and LINks. We argue from this analysis that to be defined as effective, at least by those who seek to manage their performance, people on these groups must possess two key qualifications for their role, qualifications that seem to us to be in tension. First, they must appear to be ‘ordinary’. This is a term with a special place in publicity materials, which (although never defined) is consistently held to be essential in members, if they are to uncover the views and needs of the local population in ways that service‐based approaches cannot. At the same time, however, members, we are told, must also conduct themselves so that they share many of the characteristics of the professional health‐care experts who work within the complex bureaucratic frameworks of health organizations. We then point to some of the reasons why these twin expectations provide a Catch‐22 situation for public involvement policies, a tension which, we believe, is behind many of the difficulties currently being experienced by policy makers in this area. 14
To be clear, we are not arguing that there is always opposition between any possible definition of ordinariness and professionalism. What we are suggesting, however, following Barnes et al.’s 15 discussion of the problematic nature of other commonsense notions used in the field of public involvement, is that the rhetorical way in which ‘ordinary’ gets deployed in official discourses tends to constitute an ideal for forum/LINks membership. However, we claim that this ‘ordinary’ ideal conflicts with a range of other official expectations about what members should also be like. For example, a commonsense understanding of ordinariness might be difficult to reconcile with increasing the racial and social diversity of involvees. But of particular interest for us in this review is that, we think, it also conflicts with another set of characteristics constituted by government as valuable – characteristics that, as a heuristic, we label ‘professional’: which is to say that involvees are expected to be knowledgeable about health care; able to devote substantial time to their role; be accepted as equals by other professionals and so on.
We develop the case for this conflict via four vignettes arising from the practical experiences two of us have had through personal association with a CHC and a forum respectively. The narratives illustrate some of what we suggest are the inevitable, and more or less irreconcilable, tensions for members of such groups: between being both an ‘ordinary’ lay person and‘professional’, in the senses explained above. We conclude with reflections about future policy options to reduce the effects of this double‐bind.
Populating public participation groups
Throughout government, in the name of both democratic renewal and public‐service modernization, public participation initiatives have proliferated under new Labour. The forms taken have been diverse, embodying both consumer‐oriented choice and more collectively based voice. 5 Health has been no exception, with a trend towards increasing choice of service providers for patients, matched by successive reforms to the mechanisms for patients and the public collectively to influence health‐care decision making, with forums replacing CHCs before being replaced by LINks.
With both of these sets of reforms, the purported aims have been similar. In putting forward plans for the replacement of CHCs, the NHS Plan indicated that forums would be effective in providing ‘direct input from patients into how local NHS services are run’. 16 More specifically, the policy guidance on forums issued by the Department of Health saw them as a means of ‘achieving three fundamental objectives: strengthened accountability to local communities; a health service that genuinely responds to patients and carers and a sense of ownership and trust’. 17 Similarly, by replacing forums, it was proposed that LINks would ensure that
people are encouraged and given opportunities to have their say in how providers improve their local services; local people are involved in how the quality of services is assessed and continually improved; NHS trusts and PCTs are accountable to their local populations and that organisations are held to account; and commissioners engage with, respond to and are accountable to the communities and groups within their populations. 13
While the replacement of CHCs by forums was associated with the wider modernization project, with a view to ensuring that institutional arrangements for public involvement were fit for a changing society and state, the transition from forums to LINks was accompanied by no major shift in the rationale for involvement. Despite some post hoc rationalization about better links with social care services and local authority boundaries, forums were replaced because they were seen to be ineffective and failing to fulfil the brief set out for them. Or, as A Stronger Local Voice puts it in the context of the formation of LINks: ‘the current systems for involving and engaging with patients and citizens [i.e. forums] will have to be strengthened and improved’. 13 In particular, LINks were to be given greater independence from the NHS and autonomy in setting their own agenda, to provide an input into service provision and, especially, commissioning processes.
The aims of patient and public involvement under Labour, then, common to both forums and LINks, included accountability to local communities, responsiveness to patients and ensuring a broad ownership among patients and the public of local NHS services and reforms and improvements to these. It was recognized that the developmental nature of these overlapping objectives meant that they needed to be addressed through ongoing engagement between health‐service managers and (groups representing) the public, as well as occasional consultation or surveys. Who, then, to populate these groups, to act as the patients and members of the public with whom the health service might engage, fulfilling the democratic and technocratic aims of patient and public involvement?
The answers to this question seem ambiguous. Key policy documents stress the need for involvees who are not only representative or somehow typical of their peers, but also individuals who embody characteristics that are far from typical of the wider public. In the same document, for example, those responsible for public involvement are urged to ensure that ‘a representative cross‐section of people, community groups and key stakeholders have been involved from an early stage’, 17 whilst at the same various other traits to be valued in involvees are highlighted, including ‘knowledge, experience of providing/using services, […] considered and informed opinions’. Guidance from the Commission for Patient and Public Involvement in Health (CPPIH), which supported and performance‐managed forums, highlights the need for a number of very particular characteristics among forum members, arguably distinguishing them from much of the wider public: ‘time to devote to the task’; ‘a keen interest in health and social care’ and the ability ‘to work as part of a team’. 18
Thus, a kind of representativeness or typicality is sought of involvees, at the same time as certain other attributes, which might mark them out from others. However, certain aspects of the function to be served by forums and LINks add an extra complication to this set of valued characteristics. Forums were set up not only to put forward the views of their own members to the health service but also to seek out the experiences, needs and wishes of the wider population of patients and the public: ‘actively finding out what patients, carers and families think about their health services’. 18 LINks similarly are to ‘gather information from a wide range of people and a wide range of sources – information about what local people need in terms of both their health and social care services and about their experiences of using these services in their area’. 13 Both forms of public involvement, then, are to be active in their representation, aggregating, analysing and prioritizing the needs of their local populations. Consequently, there are further requirements of the skills of those who serve on them, invoking both professionalism and ordinariness. For example, another criterion included by the CPPIH in the list mentioned above is: ‘understanding of the health needs of the community’. 18 This attribute is to be achieved through reflexive skills of the kind highlighted by the CPPIH as important, but also through knowing the community as an insider.
Publicity materials produced by the CPPIH in its recruitment drive for forum members emphasize all of these qualities: reflexivity, enthusiasm, ordinariness, the insider perspective that derives from membership of the community. ‘Ordinary people only’, declares one publicity leaflet: ‘experts […] need not apply’. Brochures and leaflets stress that ‘you may be young or old or from any section of the community – most importantly you’ll want to check and challenge when it comes to health’. The materials appeal to ‘ordinary people’; ‘people who know their communities’; people with ‘knowledge or experience of a particular aspect of health or health care’. Above all, individuals who somehow meld all these qualities are what is required, as summed up in a passage that is repeated in several of the publicity materials:
We need people like you – people who know their communities and will give their time to make a real difference. Can you help to bring better health to your community? (italics in original).
The person specification, then, is a multifaceted one 18 in which the local knowledge that derives from commonality with the wider public (the local community and communities) is valued alongside more abstract knowledge and skills. Moreover, the role of forums and especially of LINks, which are expected to prioritize the inputs of various other forms of public participation and feed these into commissioning processes gives them an increasingly professionalized function, adjudicating on local health needs and wants and presenting these to managers in the system for action. Thus, the special place reserved for ‘ordinary’ laypeople in mediating between government and the public noted by Martin 18 is one that is potentially compromised by the professionalizing tendencies immanent in the kinds of demands placed on them. Efforts to harness and deploy ‘ordinariness’ seem to risk a form of professionalization that takes those involved away from that very ordinariness. In terms of the time and skills needed and the place of forums and LINks in relation to NHS decision‐making processes, the requirements of membership of these groups is something that is potentially in conflict with the desired qualities of representativeness, ordinariness and typicality.
Narratives of involvement
In this section, we illustrate and enlarge upon these policy dilemmas via four short narrative vignettes. The stories are drawn from the experiences two of us had in the past – one as the chief officer of a CHC between 1994 and 1997 (author 1) and another who was a member of a primary care forum between 2003 and 2007 (author 3) – and we accordingly use the first person in presenting them. Clearly, the vignettes have been written some time after the events in question – no doubt we might have told our stories differently immediately afterwards. Furthermore, they have been (slightly) fictionalized to protect third parties. And, of course, they are open to be read in a variety of ways; for example, vignettes 1 and 3 also happen to illustrate the bad practices health bodies still indulge in while conducting public consultations – in spite of various regulatory attempts to stop them doing so. Nevertheless, they are offered in the belief that they provide new insights – particularly into the human dimensions of public involvement. Members of CHCs and forums were individuals who acted, like us all, for a range of complex human reasons; but, such individual complexities are often forgotten when ‘the public’ gets abstracted into policy documents. So, the vignettes are intended to evoke the Catch‐22 for current thinking about effective public involvement; they also serve as reminders of the sort of personal investment that membership of a public involvement group typically requires.
The first three vignettes give different examples of how, in spite of the fact that ordinariness is ostensibly the quality valued in members, it was this very ordinariness that led to a variety of problems. Some of the problems reflected mundane matters faced by ordinary people – time constraints and having a greater commitment to other priorities than one’s health‐care role (vignette 2) or a lack of the professional expertise in health care required to make sense of proposed policy changes (vignette 1). More fundamentally, however, the vignettes also show how it was because they were ordinary people that members failed to enjoy the levels of cultural capital 19 needed for influencing policy‐making. As particularly illustrated in vignette 3, ordinary people are the very individuals that managers and health‐care professionals seem to have been socialized not to take seriously and furthermore, for health managers, the political costs of ignoring ordinary people’s views is generally negligible. On the other hand, however, vignette 4 illustrates how one particular CHC member responded to these problems: we interpret her actions as an attempt to lose her ordinariness and to try (however oxymoronically) to professionalize her lay role – professionalization representing a way towards gaining the status and prestige required for influence.
Vignette 1
The first vignette relates events around December 2003 when my own local primary care forum was established. On 18 December 2003 (that is, within days of being established), the Directorate of Access at the Department of Health sent all primary care trust (PCT) forums a section of the draft General Medical Services Contract for comments within a 4‐week deadline (2 weeks of which, incidentally, were taken up by the Christmas and New Year period). Accordingly, each forum member received a 27‐page extract from the proposed new GP contract, detailing in legalistic jargon the circumstances in which patients could be refused access to a GP list. On meeting for only the second time, the forum’s agreed response was brief: ‘The documents should be presented in a more user friendly format if consultation is to be effective’. How could we have been expected to do anything else? Indeed, it is worth noting that even before it had been formally established, forum‐members‐in‐waiting had been flooded with a range of consultations, requests to sit on groups and so on. To fulfil them all, we could have spent three or four days per week on forum business – although we were, of course, unpaid volunteers giving up our leisure time.
Vignette 2
To show how issues of time and commitment could affect individuals, the next vignette concerns a CHC member who had recently retired and was active within local voluntary groups. She had joined a health authority task group that was reviewing local maternity services, a group which had made a number of controversial proposals and was attracting a lot of press interest. Problems were mounting such that there was a need to convene an urgent meeting, and, as CHC chief officer, I was asked to co‐ordinate her attendance. Although I told her of the circumstances surrounding the need to meet urgently, she was unavailable on the first date proposed because, she said, she was having her hair done; the second, because she had promised to look after her grandchildren; the third, because she was meeting up with friends to go shopping in town. In the event, the meeting went ahead without her. Now, it is important to stress that we are not implying any criticism of her actions. As an unpaid volunteer, we are hardly surprised that she decided to privilege her personal priorities over her CHC work. Indeed, had she been the kind of person who was prepared to meet demands for urgent availability she would arguably have been less likely to understand what ‘ordinary’ people were looking for in health care. To give herself over to this kind of commitment would have been to sacrifice, to some degree, her ordinary life – of which going to the hairdressers, looking after grandchildren and so on were, no doubt, integral parts.
Vignette 3
The first two vignettes should not be taken to imply that members were unwilling to put in hard work. Aware that access to GP services was becoming a hot topic in the town, for instance, members of my forum decided they would devote much of their effort in 2006 to studying patients’ views about the ease of getting appointments in GP practices. Between February and August 2006, we surveyed 966 patients at all 11 GP surgeries (around 1 per cent of the town’s total population). Members spent 144 h of their own time completing our research and the report’s key finding reflected a widespread view among local people: that it was harder to make an appointment to see a GP than it had been before the new GP contract was introduced. However, in response to the report, a PCT manager explained to us at a forum meeting that she had conducted her own survey in conjunction with the medical director. They had informally rung round the surgeries and although they had had variable experiences, there was, in her opinion, nothing untoward. Needless to say, no action was taken by the PCT as a result of the forum’s survey. Leaving aside the marginalization of a pretty clear public concern, the fact that the report was more or less dismissed was demoralizing to me and to the other forum members who had devoted (and now, it seemed, wasted) a significant personal time to the project. It was especially demoralizing because it was hard to believe that the PCT would have responded in the same way to a survey conducted by a group with more political and intellectual prestige or, indeed, one with more straightforward ‘clout’. How, we wondered, would PCT managers have responded to the findings had they been produced by the strategic health authority for example?
Vignette 4
On the other hand, CHC and forum membership could be (for those who wanted it to be) the first step on the ladder towards paid and more directly influential posts, such as non‐executive membership of NHS trusts. Such possibilities led members with these ambitions to act in (what we interpret to be) a quasi‐professionalized mode – not that of an ordinary lay person. One individual from my own time at the CHC comes to mind in particular: a woman with a part‐time, professional job, who quickly made her presence felt on joining the CHC, attending virtually all the meetings, and always speaking at length at them. She came to my office on a regular basis, often armed with consultation papers covered with highlighter pen (many other CHC members pretty clearly had not read theirs – as the pristine state in which they brought them to the meetings testified) asking for clarification on various points. Indeed, my heart still sinks as I think of her. She caused a lot of hassle and was regularly on the phone to the CHC chair, often, or so it seemed, with complaints about my shortcomings. Although those who are attracted to groups like forums or CHCs are different from the average person – not least by virtue of the fact that they are ‘natural joiners’ 20 – members like this particular individual seemed to me to be rather different again, hardly typical of their local community. Paradoxically, however, people like the individual in this vignette tended to be the ones most ‘useful’ to managers. This particular CHC member was quickly co‐opted on to various official committees – in part, presumably, because she was always prepared to be available (in contrast to the person described in vignette 2). Indeed, I understand that she went on to be a non‐executive member of a local trust after I had left the CHC.
Discussion and conclusion
We submit, therefore, that to search for people who are ordinary and who have the ability to be committed at the level required for what government hold to constitute ‘effectiveness’ inevitably presents a Catch‐22. Lay people are, by definition, not experts in health care; and as non‐experts, especially in the professionalized and evidence‐based culture of today’s NHS, they lack the prestige and credibility enjoyed by many other voices in health care.
In vignette 1, the Department of Health contravened its own guidelines about public consultation; it should have allowed sufficient time and used jargon‐free language. However, the fact that it can choose not to do so (with apparent impunity) seems to us to reinforce the problem that ordinary people typically lack the knowledge and prestige to insist on their rights. Compounding this problem, lay people also tend to focus on issues seen as marginal to health‐care strategies and policies. Recall, in vignette 3, how the PCT manager seemed relatively uninterested in whether surgeries made it easy to get appointments, however frustrating it might be for ‘us’ in the community! More mundanely, we suggest that it is simply unrealistic to expect individuals in unpaid and entirely voluntary positions to devote substantial amounts of time and effort to a lay role, particularly when they become aware that their work is at high risk of marginalization or dismissal. Of course, meetings called at short notice are difficult for everyone involved, but as vignette 2 reminds us, ordinary people are likely to have rather different priorities from those of full‐time ‘professional’ staff, for whom it would generally be unacceptable to prioritize (what might be seen as trivial) personal commitments over important work‐based matters.
The Catch‐22 in all this is that when members are prepared to be committed to the extent required to be deemed effective by health officials (as in vignette 4) this very commitment turns them into quasi‐professionals, more like the managers they are advising than the people they supposedly represent. We are unsurprised, then, that the recent attempts to make mechanisms of public involvement more effective have all been seen as unsatisfactory by policy makers. We are unsurprised, in particular, because the way in which CHC and forum members achieved ‘effectiveness’ in the eyes of health managers, relied upon narrow and ultimately self‐defeating assumptions about the nature of what constitutes ‘effectiveness’ for public involvement.
One underlying reason for this problem, in our view, has been the application of standard health‐care performance management techniques to such groups. This is because managing the performance of volunteers who are expected to represent ordinary people is necessarily to draw them further into institutional frameworks – frameworks that prescribe and control members’ (voluntary) activities. Even worse, perhaps, performance management also tends to create a context in which the public voice is expected to focus on established agendas concerning health‐care priorities and strategies. Furthermore, a managed public voice must also speak in ways that take account of relatively sophisticated policy debates, notions of evidence and so on. All this is, ipso facto, very difficult, if not impossible, for ordinary people to achieve. And anyway, why should they bother to try? Thus, conventional performance management can be expected to create the worst of all worlds. It is likely to alienate those members who want to make a contribution – but who will not do so if they have to prioritize their work on health committees over their family and community lives; at the same time, it is also likely to accentuate the incentives for lay roles to become professionalized, thus distorting the apparent desire for a supposedly ordinary public voice.
So, our proposal to get out of the worst of the Catch‐22 for effective public involvement groups is (paradoxically) to suggest focusing less on effectiveness or more precisely, focusing less on those conventional, managerially defined notions of effectiveness that are now pretty much taken for granted within public services. This is because, if bodies like LINks are to do more than provide unthreatening, homogenous and tokenistic public perspectives, they need to be given space and time to pursue their own agendas. Indeed, we feel that such debates are of wider relevance to the constitution of ‘representativeness’ and ‘effectiveness’ in public involvement more generally.
On the face of it, policy seems to be changing in this direction. For example, the framework for running LINks suggests that the government ‘wish to make funds available to local communities to help them develop LINks in ways that are right for them’. 13 However, we suggest that giving freedom for members to develop LINks in ways that are right for them means allowing them to pursue agendas that may often appear idiosyncratic, even downright wrong from the point of view of those tempted to performance manage them. Indeed, granting such freedom implies an altogether more laissez‐faire approach to their governance than that which has come to be the norm for public services under New Labour – what we are suggesting echoes the position of CHCs in the 1970s and 1980s in relation to a relative freedom from central control.
Of course, arrangements like these would mean that what individual groups actually do would be highly variable. And the risk is that some LINks might end up doing little that anyone values – as was acknowledged to be the case with a few CHCs. 2 But we think this risk is worth it; after all, such committees involve extremely low cost in terms of overall spending on health care. We ourselves certainly believe that ordinary people have the potential to bring new sources of creativity to public services and encourage more open debates that represent wider constituencies and interests. A belief that policy makers for LINks share: ‘when people get involved and use their voice, they can shape improvements in provision and contribute to greater fairness in service use’. 13 But to have any chance of doing this, they will need to be left to get on with it without much managerial interference and be given several years to find their feet. Of course, even if they were to be left alone, some will still simply fail; however, if we give them the chance, many others may well surprise us by the impact they could make.
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