Origins: self-management as a lay activity outside of the health care system

Self-care refers broadly to a range of activities that patients undertake for themselves in managing illness. This includes negotiating one’s way through the health service, the use of skills, information, technology and resources, mobilising and drawing on social networks and the use of guided self-management programmes devised by professionals.

Policy, which explicitly advocates self-care supportFootnote 1 for people with a chronic condition, is a recent phenomenon. However, the idea that people facing living life with a long-term condition should practice self-care is by no means new. Despite the increasingly specialized roles assumed by health professionals and expansion of treatments designed to ameliorate the symptoms of chronic illness and delay mortality, how chronic illness is managed has been and remains the province of lay people. Surveys conducted at different points in time have shown that only a small proportion of ill health ever reaches the health care system and the reasons for the non-presentation of illness to general practice is because a significant proportion of ailments are managed by individuals without recourse to professional care (Wadsworth et al., Reference Wadsworth, Butterfield and Blaney1971; Rogers and Nicolaas, Reference Rogers and Nicolaas1998).

Sociological studies have drawn attention both to the way in which self-management constitutes a ubiquitous, taken for granted, intuitive and routinized set of activities embedded in the everyday life of communities (Robinson, Reference Robinson1971), and the specific aspects of the experience and work of managing a chronic illness. In-depth studies suggest that along with disruption to the normal life course (Bury, Reference Bury1982) and changes to self perception, the sequalea of being diagnosed with a chronic illness necessarily involves adaptation to the social world through the re-definition of peoples’ competence as social actors (Gerhardt, Reference Gerhardt1989), the protection of self-identity from the threat of stigma and, of most relevance, to understanding self-management, developing and drawing upon various coping mechanisms, strategies and styles of managing which individuals develop over time (Bury, Reference Bury1991). From this vantage point, self-management is represented by the mobilization of resources and the maintenance of normal activities and relationships (family, friends and occupations) in the face of an altered situation. The notion of ‘strategy’ captures the practical steps taken in order to mobilize resources and minimize problems in everyday life (Locker, Reference Locker1983). ‘Style’ has been used to denote the various symbolic ways in which people respond to and present their illness, both to themselves and others (Radley and Green, Reference Radley and Green1987).

Self-management activity has also been expressed in a collective form as the orientated actions of new health social movements (NHSMs). NHSMs are networks of mutually supportive people with a shared collective identity and ambivalence about the health care system with a motivation and orientations to civil rights (Rogers and Pilgrim, Reference Rogers and Pilgrim1991).Footnote 2

This history of lay peoples’ long-standing involvement with self-management is reflected only marginally within recent policy making about self-management. Indeed, the informal health care system remained invisible and excluded from the agendas of policy makers until the late 1990s. With the adoption of self-management and its incorporation into official UK health policy both the radical/oppositional and collective aspects of bottom up patient action seems to have been discarded. Rather a new agenda has been configured by a series of official policy documents and reviews which centre on the notion of supporting self-care.

State sponsored self-management from the 1990s on and the emergence of the Expert Patients Programme

Ideas generated in policy circles immediately prior to the election of a New Labour administration in 1997 in the UK included self-care skills training, proposals for a national telephone helpline and supporting people in the community. The key 1997 New NHS White Paper (Department of Health, 1997) outlined a government commitment to supporting people to care better for themselves, and the subsequent 2000 NHS Plan cited self-care as one of the five key building blocks of the future NHS (Department of Health, 2000). However, the new approach to self-care began to gain real momentum with the New Labour government’s 1999 White Paper, ‘Saving Lives, Our Healthier Nation’ (Department of Health, 1999). This paper set out to demonstrate how government proposed ‘to save lives, promote healthier living and reduce inequalities in health’. The document pointed out that ‘everybody should try to look after themselves better, by not smoking, taking more exercise, drinking less and eating more sensibly’ (preface).

Subsequently, along with concern for the health status of the nation, a direct link to cost and the need to manage demand was made in the first Wanless report (Wanless, Reference Wanless2002). This marked out a ‘fresh page’ approach to the concordat between medical care, the patient and the state, and noted the importance of self-care in general. However, its relevance was principally directed to long-term conditions by placing self-care at the centre of the ‘fully engaged’ scenario, which was also significantly cheaper than two alternative scenarios – ‘steady progress’ and ‘slow uptake’. The fully engaged scenario envisaged people taking more control of their health and illness by making better use of a health service that was technologically advanced but which would mean a more efficient and effective use of NHS resources. Furthermore, in the fully engaged scenario, Wanless suggested that the consequences of non-uptake of self-management were serious, that is to say:

A number of other initiatives followed focussing on the implementation of these aspirations. In 2003, the Chief Nursing Officer was appointed as the Department of Health’s Director for self-care and in 2004, the NHS Improvement Plan identified self-care as one of the new National Standards (D10) 2004 (Department of Health, 2004b). The ‘Choosing Health’ White Paper planned for ‘health trainers’(Department of Health, 2004a), which was followed by the production of Guidance documents in 2005 entitled ‘Self Care – A Real Choice’(Department of Health, 2005). Another key White Paper titled ‘Our health, our care, our say…’ ‘Supporting people with long-term conditions to self care’, followed in 2006 (Department of Health, 2006).

Expectations as to what the new policy could deliver were high and the benefits of supporting self-care were certainly promoted as substantial by its advocates. Benefits identified in these policy documents included health and system related outcomes which included increases in life expectancy: better control over symptoms, reductions in pain, anxiety and depression levels, improvement in quality of life with greater independence, days off work were estimated to reduce by up to 50% and an increase in social capital. Explicit implications for the care system have been identified as improved quality of consultations, a reduction in general practitioner visits of between 40% and 69% and hospital admissions by up to 50%. Claims were also made that hospital length of stay could reduce, as could the number of days in hospital (by as much as up to 80%), out-patient visits (by between 17% and 77%) and accidents and emergency visits (by 54%), with medication intake, for example steroids, reduced and medicines ‘compliance’ being improved by 30% (http://209.85.229.132/search?q=cache:fv0A2XuyKeEJ:www.ich.ucl.ac.uk/cypph/downloads/learning/SelfCare_RealChoice.pdf).

These broad-ranging expectations were funnelled in the first instance to one key initative, the EPP, which was initiated by the Department of Health in 2001(Department of Health, 2001). The Chief Medical Officer who set up a task force to develop the EPP included representation from voluntary sector organizations including the Long Term Medical Conditions Alliance and Arthritis Care who had run self-care skills training courses in the UK in the early 1990s and had subsequently promoted and disseminated the training which formed the core of the EPP through a volunteer work force. In the next few years (notably, 2003–07) this programme was brought on stream in primary care trusts (PCTs) in England.

An array of aims was included in the original EPP training course which included changing the culture of the NHS to be more receptive to self-care and professional training. However, most emphasis was placed on the dissemination of skills-training which was a programme modified to run as a generic programme based on the Chronic Disease Self-Management Programme developed at Stanford University (Lorig et al., Reference Lorig, Sobel, Stewart, Brown, Bandura, Rittar, Gonzalez, Laurent and Holman1999). It comprised six weeks of 2.5-hour-long sessions, which were delivered by trained volunteers/paid lay trainers and focussed on the uptake and regular use of a set of generic skills. The six-week EPP training course operated on an open referral basis available to anyone with a long-term condition and was designed to be delivered by trained volunteers or paid trainers through health and social care organizations or community voluntary organizations licensed to deliver the course. In terms of specific skills, the content of the course was orientated to ‘Expert Patients’ learning relaxation, better breathing, healthy eating and nutrition, exercise, how to build levels of fitness, flexibility and strength, how to communicate more effectively, making informed choices, dealing with anger, fear, frustration, isolation, fatigue and depression, using problem solving skills, making plans and working with health care professionals.

The effectiveness of the Expert Patients Programme

Prior to its introduction in England, the Stanford training programme had been subjected to a number of studies, some of which used randomized controlled trials and were generally large and well conducted. Nonetheless, whilst demonstrating high internal validity the scope of such studies were limited in the extent to which they undertook economic analysis. Additionally no such study had been conducted in the UK so there was a question of establishing external validity (Kennedy et al., Reference Kennedy, Reeves, Bower, Lee, Middleton, Richardson, Gardner, Gately and Rogers2007a; Reference Kennedy, Rogers and Bower2007b; Reference Kennedy, Rogers and Crossley2007c) and the interest in generic programmes was a particular focus of the UK policy, and the existence of NICE (National Institute for Clinical Excellence). These considerations generated a political necessity of conducting trials on all large NHS interventions which are destined for national roll out in the NHS.

The effectiveness of the EPP was tested in a trial alongside a range of other studies which formed a national evaluation conducted by the NPCRDC (National Primary Care Research and Development Centre). The outcomes used in the trial indicated that the training did have some effects. In terms of primary outcomes, this included a medium effect on peoples’ self-efficacy to undertake self-management, a small effect on energy (a marker of health status) and little effect on the overall routine utilization of health services. There were some small improvements in secondary outcomes, which included improvements to social role, emotions, health distress, exercise, relaxation, partnership working between patients and professionals (Kennedy et al., Reference Kennedy, Reeves, Bower, Lee, Middleton, Richardson, Gardner, Gately and Rogers2007a; Reference Kennedy, Rogers and Bower2007b; Reference Kennedy, Rogers and Crossley2007c). The programme was found likely to be cost effective with the intervention group showing better EQ5D scores (0.020 QALY (quality adjusted life years) gain) and were found to have reduced costs, estimated to be about £27 per patient (Richardson et al., Reference Richardson, Kennedy, Reeves, Bower, Lee, Middleton, Gardner, Gately and Rogers2008). UK trials carried out at about the same time showed similar results (eg, Griffiths et al., Reference Griffiths, Foster, Ramsay, Eldridge and Taylor2007). Notwithstanding the positive indications, given the high expectations of self-management policy in changes to behaviour, health status and utlization, these results at best delivered modest results falling short of those anticipated by EPP advocates and policy makers. This modest record of achievement is reinforced when placed in the context of implementation and a fine-grained exploration of the meaning of change. A process evaluation of the implementation of the programme showed that whilst there were few PCTs which had not implemented the policy (Lee et al., Reference Lee, Kennedy and Rogers2006), there were nonetheless substantive difficulties in implementation (Kennedy et al., Reference Kennedy, Rogers and Gately2005).

On the face of things subjectively, some recruits viewed EPP attendance as a positive, even life changing, experience. On the EPP website a volunteer tutor describes attendance on the course as life changing:

However, doubts about the ability to reach those most likely to benefit raised questions regarding its appeal to wider population groups. Moreover, closer scrutiny of the underlying ethos of the programme raises a number of questions about its underlying ethos.

The problem with self efficacy and psychological determinism

I wish to point to two problems with the essential psychological assumptions of the programme. The first is how a programme, which focuses on changes in self-efficacy, is able to deal with social needs and inequalities. The second relates more broadly to a problem with the presumptions in psychological theories of change underpinning self-management interventions more generally.

Expert patienthood and the imposition of an imagined identity

Policies concerned with health promotion have, for sometime, included appeals to normative lifestyles and desirable behaviours, which to an extent have been based on an ideology which blames or holds the individual responsible for his or her illness. However, whilst previous policies focused on what patients should do to maintain their health, the new policy approach to self-management is focused on what sort of person the patient should become. The required type of patient is one with attributes which resonates with the responsible citizen evident in recent policy associated with New Labour welfare policies (May, Reference May2006). There has been a proliferation of terms representing an idealized self-managing individual (‘empowered’, ‘autonomous’, ‘future’, ‘expert’, ‘activated’, ‘wireless’, ‘co-producer’ or ‘flat pack patient’). The ideal type notion of patienthood demands the capacity of being confident, in control, able to monitor and manage a condition, engage with technological innovations, whilst at the same time allowing constraints on the demands made on services. The ‘flat pack patient’ invests the ideal self-managing individual with the aptitudes or abilities of an active consumer. Cayton (Reference Cayton2006) describes the desirable relationship between the self-managing patient and health services as follows:

The notion of an activated patient is of particular salience since it forms the basis of a positive outcome of attending self-management courses such as the EPP. ‘Activation’ in self-management, is viewed as involving four ‘developmental’ stages: (i) coming to believe the patient’s role is important, (ii) learning enough and developing enough confidence and knowledge necessary to take action and (iii) actually taking action to maintain and improve one’s health (Hibbard et al., Reference Hibbard, Mahoney, Stock and Tusler2007). However, evidence for the translation health and (iv) staying as healthy as possible (of adopting this ‘activated’ role and better health outcomes) is at the very least equivocal. Recent research suggests that patients with or at risk of developing a chronic condition, who say they prefer to take an active role in their health care, are likely to be unhealthier than patients who prefer doctors to act in a more traditional way (Baldwin et al., Reference Baldwin, Cvengros, Christensen, Ishani and Kaboli2008). The EPP tended to attract and reinforce the norms of active and expert patients through attendance and subsequent conversion to a desired set of values (Rogers et al., Reference Rogers, Bury and Kennedy2008).

Notwithstanding the clear identification of values with those who attend the course, the imposed imagery of the Expert Patient clearly lacks resonance and appeal to those it is aimed to win over. This is indicated by poor recruitment and attendance in key population groups. Simplistic formulations of what sort of person constitutes a good self manager is little more that the construction of wishful thinking when seen in the context of earlier studies, suggesting that protestations about what patients should be doing are well understood (Rogers et al., Reference Rogers, Popay, Williams and Latham1997) but are not undertaken at the expense of maintaining a sense of coherence and control over everyday social and domestic roles or a sense of normal identity (Townsend et al., Reference Townsend, Wyke and Hunt2006). Moreover, desirable identities and attributes can not simply be prescribed in a way which people follow. As Fox and Ward (Reference Fox and Ward2009) have recently pointed out identities can never be prior or essential. Whilst to a limited extent identities can be ‘actively created’ (Davies and Harré, Reference Davies and Harré1988), the construction of ideal types of patienthood discussed above fail to acknowledge the role played by the social environments that individuals suffering from chronic illness inhabit and from which illness identities are mobilized and constructed.

Social identity theory in social psychology is predicated on the notion that cognitive identity formation is attributed with meaning only within prevailing contexts of power status and class (Brown and Lunt, Reference Brown and Lunt2002). Depending on context, condition and biography illness can have a major impact on an individuals’ identity (Bury, Reference Bury1982). Alternatively, chronic illness as an anticipated biographical event may have little impact on a patient’s identity merging with the ‘normal’ and ‘inevitable’ features of the life cycle (Sanders and Rogers, Reference Sanders and Rogers2007). This complexity is lost in formulations of the ideal type self-manager. The absence of reference to the personal and social nuances of illness identity formation is even more surprising given the claims that such initiatives are intended to be both patient-focused and centered. The dominant imagery of the ideal self-managing patient also hides the varied ways which people have found to manage their conditions in ways which fit with their ongoing domestic routines, sense of self and relationships to others. A set of alternative foci for understanding behaviour in context is required.

The missing notion of patient work

Clearly current research and the design of interventions does not pay due regard to the broader social and environmental context of people living with chronic conditions. There are a broad set of social scientific concepts informing population health which might help in filling the gap. The notion of Therapeutic landscapes: refers to ‘places, settings, situations, milieus that encompass the physical, psychological and social environments associated with treatment or healing’ which are reputed to have an enduring reputation for achieving physical, mental and spiritual healing (Kearns and Gesler, Reference Kearns and Gesler1998). Habitus – the manner in which experience and action are structured by previous experiences provides a different window upon which to view living with a chronic condition as a function of acquired deeply ingrained habits. Bordieu also refers to habitus as ‘generative structures’ which may be relevant for creating new environments for supporting self-management (Angus et al., Reference Angus, Rukholm, Onge, Michel, Nolan, Lapum and Evans2007). Illness management, as a collective rather than purely individualistic effort, has been illuminated by studies showing the combination of roles and relationships in managing illness within domestic settings (Gregory, Reference Gregory2005; Richardson, Reference Richardson2007).

Experience and identity have been important facets in understanding the change that occurs as a result of being diagnosed with a chronic illness (see above). Yet, taken on their own, they are limited for understanding and ultimately responding to patients’ agendas and enactment of self-management because they do not engage with the sense and purpose underlying self-management practices that are medically conformist or deviant. I suggest that the notion of patient work and its place within a trajectory of long-term illness career make for better heuristic devices in a future agenda of research and implementation.

We know that patients’ expectations and views of treatment vary according to the different stage in an illness career, and that illness career has a long tradition in sociology, which has utility for revealing changes in the adoption and accumulation of activities and practices that constitute the work of being ill and occur at different points in illness trajectories.Footnote 4 In the EPP, a set of skills learned by the patient is viewed as a set of particular tasks addressing specific elements which are seen as the core of patient work – communicating with the doctor and action planning – packaged together in a formulaic way. The question of its fit with the actual everyday work that patients carry out in domestic and medical settings is more questionable. The latter requires a focus on the naturalistic ways that people undertake the work of being ill. Corbin and Strauss (Reference Corbin and Strauss1985) identified three types of interrelated domains of chronic illness work which are of utility:

• • illness work (concerned with symptom management);

• • everyday-life work (the practical tasks such as housework, caring, paid employment);

• • biographical work (the reconstruction of the ill person’s biography).

Although these three types are viewed as overlapping rather than mutually exclusive, this conceptualization of work permits the exploration of what people actually value and how much and in what contexts people tend towards one sort of work rather than another. For example, Townsend et al. (Reference Townsend, Wyke and Hunt2006) found that whilst people with co-morbid conditions use multiple techniques for managing symptoms overall, symptom management was not always the most important facet of patient work. Rather maintaining and preserving valued social roles, coherent identities and a ‘normal life’ (ie, managing the practical and moral dilemmas in living with chronic illness were more important). Additionally, an emphasis of everyday-life work may be the preference and reality for those who have assumed a more passive role in the doctor–patient relationship, seeing symptom management as the preserve of health professionals and reinforced by the tendencies of health professionals to centre their own role on symptom management (MacDonald et al., Reference MacDonald, Rogers, Blakeman and Bower2008). A number of different notions of work have been identified: articulation, delegated, redistributive, surveillance, diagnostic, emotional, invisible (‘work that gets things back on track’) interactional work, which are likely to be of utility in understanding the priorities of and existing work undertaken by patients, and relevant to understanding and judging the embedding and utility of self-management interventions.

Bringing back in health professionals

A final problem with the EPP which I wish to refer to here is the removal of the delivery of self-skills training from the service provision care and support provided by health professionals – particularly those working in primary care. Peer led training has its merits, most importantly that participants are able to relate to those delivering the course on the bases of a shared history of living with a long-term condition. Yet, there is currently little evidence that peer-led training is superior to that delivered by professionals. We know from research that interactions with professionals are central and it maybe that the nature of relationality needs to be more of a focus rather than the technology in self-care initiatives. Subjectively, people encountering self-help as an option find difficulty in limiting the professional role to that of facilitator (Pilgrim et al., Reference Pilgrim, Rogers and Bentall2009). Indeed, a threat to existing positive relationships with professionals in primary care may be an unintended consequence of the lay versus professional dichotomy engendered by the promotion of peer leadership of the EPP. This is not to deny problems relating to the acknowledgement of patient agendas within health professional consultations. There is evidence of a tendency of professionals to marginalize patient agendas in self-management and, in particular, to ignore patients’ own strategies for managing a chronic condition and to discount experiential knowledge (Wilson, Reference Wilson2001; Rogers et al., Reference Rogers, Kennedy, Nelson and Robinson2005).