The articulation of neoliberalism: narratives of experience of chronic illness management in Bulgaria and the UK
Abstract
The shift from social democratic to a neoliberal consensus in modern welfare capitalist states is characterised by an emphasis on individual responsibility, consumer choice, market rationality and growing social inequalities. There has been little exploration of how neoliberalism has shaped the environment within which chronic illness is experienced and managed. This article explores the different articulations of neoliberalism manifest in the arena of personal illness management in Bulgaria and the UK. People with type 2 diabetes discussed their experiences in terms of struggling with diet, diabetes as a personal failure, integrating illness management and valued activities, and the trustworthiness of the healthcare system. The UK narratives were framed within an individual responsibility discourse while in Bulgaria lack of resources dominated discussions, which were framed as structurally generated and unrelated to individual capabilities and choices. Respondents faced personal management challenges related to consumer and healthcare market failures in both countries. Differences in market regulation and emerging stakeholder and interest coalitions influenced users' expectations and their navigation and adaption to market failures in managing their everyday illnesses. The UK and Bulgarian articulations of neoliberalism can be described differently: the first as a logic of managed choice and the second as a logic of unmanaged consumerism.
Introduction
Self-management support is recognised as a central aspect of chronic illness management (CIM) policy globally and in Europe (Elissen et al. 2013). Self-management support interventions adopted by health systems tend to emphasise individual goal setting, motivation, lifestyle modification and individualised problem-solving as the bases of improving personal CIM (Ong et al. 2014). However, social inequalities, material deprivation and social class impact on the capacity and capabilities of people to manage a long-term condition (Raphael et al. 2011). At a micro level educational interventions cultivate the ability of some people to make positive comparisons with others who are worse off in health as a means for effectively motivating the uptake of self-care practices. This, however, masks the identification of appropriate need and inequalities amongst those in most need (Rogers et al. 2009). The shaping of a cumulative set of adaptive values and dispositions are also influenced by the possession of symbolic capital in shaping differential ambitions, domestic and social opportunities (Morden et al. 2012) and by the poverty of place generated by the balance of power within capitalist societies (Greenhalgh et al. 1998).
Recent shifts from a social democratic to a neoliberal consensus in modern capitalist states have restructured the contexts in which health practices are enacted, with the more neoliberal policies being associated with higher social inequalities and worse health than the more social democratic ones (Coburn 2014). In the context of self-management support, deepening health inequalities have been posited as an ideology of governance that shapes subjectivities, and as a structural force that affects people's life-chances, and the interactions and contexts within which self-management takes place (Ganti 2014). This article draws on a study comparing people's experiences of CIM in the UK and Bulgaria. The article aims to locate the specific experiences of diabetes management in the context of political economy to illuminate the structural dimensions of the CIM environments that have emerged as a consequence of contemporary neoliberal shifts (Daker-White et al. 2014).
Neoliberalism and chronic illness management
The shift from a post-World War II social-democratic consensus characterised by a Keynesian welfare state towards a new neoliberal consensus (Jessop 2008) is relevant for understanding the shaping of social inequalities, and the contexts and experience of SMS. As a mode of governance neoliberalism embraces a self-regulating free market with the accompanying values of competition and self-interest acting as a means for effective and efficient governance (Ganti 2014). In terms of political and economic practice it is aligned with the liberalisation of economic activities, reducing the size, regulatory and redistributive responsibilities of the state, the privatisation of public resources (Guthman 2008) and a moral philosophy that shifts the responsibility for wellbeing from the shared collectivity to individual self-reliance. Despite its growing ubiquity as a force driving change, attempts to privatise, marketise and depoliticise the public realm, neoliberalism has had a variable impact. Resistance, refusals and negotiations operating at meso-levels and micro levels, including in the field of health, have meant that its outcomes have been equivocal (Clarke 2004). In an era that has seen the rise of a politics of austerity in response to the global financial crisis (Karanikolos et al. 2013) there has been deepening of social and health inequalities (Reeves et al. 2013, Scambler 2012) and a slowing down of improvements in global health (Coburn 2014). In this context it is pertinent to explore how and to what extent these are played at the micro level of activities and practices of health and illness.
Neoliberal values are evident in the health discourse of consumer choice and empowerment and as shaping CIM policy and healthcare experiences (Henwood et al. 2011, Mol 2008). Self-management practices have been viewed as a politically sponsored project towards individual self-governance and the acquisition of a new ethical relationship to the self predicated on an individual's empowered and proactive management of their life and an investment in a new set of knowledge and skills (Lindsay 2010). Within this discourse, scientific and evidence-based knowledge is understood as a neutral collection of facts passed down to lay people, leading to the emergence of ‘informed patients’ (Henwood et al. 2011). Exploring how neoliberal discourses shape the accounts and experiences of people living in a deprived area, Peacock et al. (2014) identified the repeated articulation of a discourse of ‘no legitimate dependency’ as part of the expression of illness experience. Additionally, expressions of personhood engender divisions between those who fit this ideal and are able to make positive social comparisons to improve their life regimens compared with those to whom chaotic and dysfunctional identities are attributed (Kennedy et al. 2007, Rogers et al. 2009,).
Mol (2008) argues that this understanding of CIM, focused on individual choice, represents a shift from a ‘logic of care’, where care is practiced in the context of everyday life, involving a range of people and reflecting the patient's concrete needs, to a more abstract logic of choice emphasising the right to choose (largely illusory) options. Mol notes that the departure from the logic of care represents a normative move away from a social-democratic consensus about ‘good’ care arrangements, leaving open the possibility of neoliberal articulations of different logics of choice emerging in a nation. Brenner et al. (2010) argue that the advance of neoliberalism has not led to the worldwide homogenisation or convergence of regulatory systems, temporal trajectories and experiences. Neoliberal policies have been implemented to various extents across Europe, shaped by processes and concerns in different contexts. Macro level processes are implicated in shaping individual capacities and dispositions in CIM, and in the actual environments within which self-management support practices are enacted.
There is currently little understanding of patients' contrasting experiences of CIM in different national contexts and the links between macro and micro level processes that shape these experiences. We aim to explore this here by considering whether such a divergence exists in relation to the impact of neoliberalism in two countries, Bulgaria and the UK. Bulgaria and the UK offer contrasting examples in their stage of implementing neoliberal reforms, enthusiasm for austerity, adequacy of funding for health care and self-management support. They differ also in the existence and impact of dedicated self-management policies and interventions, the role of drugs companies in the provision of self-management support and the availability of policies and support in tackling social and health inequalities (Rogers et al. 2015). This comparison will shed light on the necessary and contingent aspects of neoliberalism while also identifying factors and processes that have an impact on CIM that might remain invisible within single country analysis.
Neoliberalism in Bulgaria and the UK
In the EU context, Bulgaria and the UK follow different neoliberalisation trajectories. The UK, traditionally considered one of the more liberal European economies (Bambra 2007), and a pioneer of neoliberalism (which is associated with the 1979 Thatcher government), adopted neoliberal policies relatively slowly. The main change has been in shifting the tax burden (away from business and high net wealth individuals) rather than dramatically reducing welfare and overall state expenditure (Piketty and Saez 2007). The health responsibilisation agenda was introduced gradually and had affinities with policy changes lobbied for by new health social movements and voluntary sector organisations aimed at challenging medical authority and empowering patients (Wilson 1999). By contrast the process of neoliberalisation in Bulgaria has been rapid and comprehensive. This is consistent with a global pattern where poor and middle-income countries have lacked sufficient power to resist pressure from global financial institutions to adopt laissez-faire policies (Coburn 2014). Sequential Bulgarian governments have introduced privatisation, liberalisation and marketisation reforms so that currently Bulgaria has one of the smallest public sectors in Europe and the lowest levels of state expenditure, and it maintains one of the most stringent macro-economic conditions in Europe. In contrast, the respective figures for the UK are close to, or above, the EU averages (Table 1).
| Bulgeria | UK | |
|---|---|---|
| State expenditure | ||
| Expenditure on social protection % GDP (2013)a | 17.6 | 28.1 |
| Size of the public and private sectors | ||
| Public administration employment % of population (2010)b | 1.9 | 3.1 |
| Distribution of tax burden | ||
| Corporate tax ratec (%) | 10 | 20 |
| Income tax rated (%) | 10 | up to 45 |
| Macro-economic conditions | ||
| Deficit % GDP (2015) a | 2.1 | 4.4 |
| Debt % GDP (2015) a | 26.7 | 89.2 |
These differences are reflected in the organisation, regulation and funding of health care in the two countries. Healthcare provision in the UK is well resourced (9.1% of GDP, compared to 7.6% in Bulgaria), with a high level of state contribution to health expenditure (83.5%, compared to 59.3% in Bulgaria) (World Bank 2016a, 2016b). The principle of comprehensive free health coverage in Bulgaria has been eroded and health inequalities have grown since the beginning of the post-socialist transition (Balabanova and McKee 2002). Substantial parts of health care are currently self-funded. The negative impact is mostly felt by people aged 15–64 years, a quarter of whom do not have health insurance, the poor, the Roma and those living in villages and small towns (Bulgarian Finance Ministry 2013, Short et al. 2007). This is mainly due to the strong link established during the post-socialist transition between employment and access to health insurance, in a context of poor and inconsistent enforcement of compulsory contributions for people who are employed, high unemployment, the weakening of the trade unions and frequent administrative restructuring. For example, due to their very low incomes, unemployed people are often unable to make health insurance contributions. Additionally, unemployment is higher for marginalised groups. This is in part due to the now lost social function that state and municipally owned enterprises used to play in providing employment for vulnerable groups and people living in remote and rural areas. These commitments were not taken up by the new owners of the privatised state and municipal companies, while the weakening and underfunding of local and regional authorities meant that alternative employment opportunities and reskilling programmes were unavailable to such groups and areas (Delcheva 2015).
The contrast between Bulgaria and the UK is most visible in terms of the level of private expenditure on medications, which in Bulgaria is five times higher (in real terms) than in the UK, and much higher if assessed as a percentage of GDP. Bulgaria has the second highest private expenditure on medications in Europe after Serbia, followed closely by other Central and Eastern European countries (OECD 2012). The devolution of healthcare provision in the UK since 1999 has led to differences in the structure of the health service in England, Scotland, Wales and Northern Ireland. A key difference between UK nations is the stronger emphasis in England on competition and localised decision-making through clinical commissioning groups, as opposed to a more traditional hierarchical structure in Scotland, Wales and Northern Ireland with an emphasis on integration. Public spending on health services per person in England is lower than in the other three parts of the UK. Thus the differences between Bulgaria and the other three UK nations are likely to be more pronounced than those between Bulgaria and England (National Audit Office 2012).1 We draw on work conducted by the FP7 EU-WISE project2 in order to explore how these policy choices and institutional arrangements shape the contexts and experiences of CIM in Bulgaria and the UK.
Methods
Recruitment and data collection
Semi-structured interviews with people with type 2 diabetes were undertaken in Bulgaria and the UK. Using a chronological narrative approach the interviews aimed to elicit personal accounts of events, people, places and situations (Roberts 2002). Participants were identified through purposive and snow-balling sampling techniques drawn from networked contacts and personal knowledge. Recruitment was from deprived and marginalised settings – contexts where CIM is likely to be most challenging – and focused on identifying information-rich cases of respondents of different age, gender, health and socioeconomic status who were likely to report a wide range of experiences of living with a chronic illness. A total of 60 interviews were conducted (30 in each country). Most interviews were 60 minutes long, but they varied between 40 and 120 minutes. Interviews took place in the Greater Manchester area in the UK and in Sofia and Saedinenie in Bulgaria between February and October 2013. All interviews were conducted face-to-face, recorded and transcribed verbatim in English and Bulgarian. We asked about:
- experiences of diabetes and diabetes management
- patients' sense of responsibility, style of coping, orientation, resources
- politics of health impinging on management
- types of social involvement and illness-related work of network members
Ethics and informed consent
Potential interviewees were sent information and a consent form explaining the background to the study. All participants gave their informed consent to take part in the study and their comments were anonymised when presented in the article. Ethical approval was granted by the relevant ethics committees in Bulgaria and the UK.
Data analysis
Analysing data related to situations embedded in different institutional settings and languages posed challenges in terms of data analysis and minimising the chance of misinterpretation and over-interpretation of the findings. These challenges were addressed by having bilingual members in both research teams who were familiar with both sets of interviews, together with frequent discussions of emerging themes and the interpretation of their meaning that involved all members of the two teams, and drawing on their familiarity with the institutional, cultural and data collection process in the two countries.
In the analysis we aimed to elicit links between people's experiences of CIM and factors operating on macro, meso and micro levels, as well as identifying contextual changes over time (Brannen and Nilsen 2011). Drawing on our earlier analysis of factors identified by stakeholders in the two countries (Rogers et al. 2015) we developed a preliminary coding frame which included the funding and adequacy of health care infrastructure, the impact of regulation, access to services, economic, social and cultural resources, the role of drug companies and the type of interventions introduced by primary care.
A sub-set of interviews and field notes were independently analysed by members of the Bulgarian and UK teams, which formed the bases of thematic and textual analysis arriving at a set of key themes and recurrent sub-themes (Strauss and Corbin 1998). Relevant quotes were translated into English. We undertook comparative data analysis clinics with team members present, which were followed by additional discussions. Each partner team's initial data coding was subjected to an adapted comparative method to identify convergent and divergent themes across topics. The process was inductive and flexible. A coding frame was developed and all Bulgarian and UK interviews were analysed by each team, with bilingual members of the two teams analysing both sets of interviews (see Table 2). The findings were discussed and consensus of the meaning of key topics was obtained in discussions within and across country teams.
| Bulgaria | UK | |
|---|---|---|
| Struggling with diet | ||
| Acceptability of ‘healthy lifestyle’ changes | † | ‡ |
| Motivation and negotiation of changes | ‡ | |
| Unhealthy choices as an everyday strategy | † | |
| Navigating the food environment | ‡ | ‡ |
| Affordability of diabetes food | ‡ | † |
| Strategies to managing financial resources | ‡ | † |
| Diabetes as a personal failure | ||
| Good/poor individual choices | † | ‡ |
| Weight management | ‡ | |
| Personal incapacity | ‡ | |
| Burden to family and society | † | ‡ |
| Stigma of incapacity | ‡ | |
| Integrating illness management with valued activities | ||
| Biographical changes and illness progression | † | ‡ |
| Formal employment as leisure and a way of being active | ‡ | † |
| Trustworthiness of the healthcare system | ||
| Dissatisfaction with bureaucratised healthcare provision | † | ‡ |
| (Dis)trust of healthcare professionals | ‡ | ‡ |
| Challenges of navigating the healthcare system | ‡ | † |
| Affordability of medications | ‡ | |
| Access to medications advice | ‡ | † |
- †The statement is only to some extent valid for this country. ‡The statement is fully valid for this country.
Findings
The analysis identified four ways in which people's experiences of diabetes management in Bulgaria and the UK might be shaped by the different articulations of neoliberalism in the two countries. Our respondents discussed their experiences of diabetes in relation to (i) struggling with diet; (ii) diabetes as a personal failure, (iii) integrating illness management and valued activities and (iv) the trustworthiness of the healthcare system.
Struggling with diet
I've only one life to live and I'm not going miserable, that's a dead racing cert! (UK 4)
The doctor said something fatal, when I went. He said, ‘Relax. Relax now, take it easy a bit. Don't starve yourself as much, relax.… And then it's sort of someone saying ‘Relax’… you're sort of running a race. You get to the front and you think ‘I'm there’. And you relax, and then things start overtaking you again. You know, so it… no, it just doesn't work. (UK 1)
I have to sometimes cut corners and get quick meals on the table… there's stuff that we would eat that I wouldn't be mostly happy about; … like, breaded chicken breast, or frozen chips and we don't eat those a lot, but they definitely feature in a weekly meal. So it's difficult to cook from scratch or to be prepared enough to have frozen cooked meals in the freezer. (UK 13)
[Health professionals] say don't have sugar and you don't have salt, so I don't use sugar and I don't use salt, but I don't know all other things that have got salt in them. … but there's certain times when you have to buy something because that's all you can afford… like this weather, you want quite a bit of soup and things like that, I don't know what the hell's in it, I know it says vegetable on the tin, I don't know what's in it… and to be quite honest I'm not going round looking at every bloody tin I pick up off the shelf and see what's in it. (UK 23)
No, there's nothing difficult about that, I don't consider following what you can and cannot eat being difficult … not that it is not difficult, but it just becomes a normal everyday thing … it could be said that the diet is one of the most challenging things because there are things that you do have to eat, but you cannot afford them because you don't have the financial capacity. Because things are expensive and often you simply deprive yourself of one thing or another. (Bulgarian 1)
This is not the same as with other illnesses… you need to have a diverse diet: meat, beef, lamb, it should be lean meat, chicken shouldn't have skin, cannot be drumsticks, but only chicken breast, this is all very expensive. And fish… don't even mention this… fish is an expensive luxury. … You have to cook separately for yourself… you eat separately something that the others [in your family] would also like to have and you cannot tell them ‘You cannot have this because this is my diet’. The [diabetes] diet is more expensive and of better quality. … The family restricts itself financially. We are talking about 100 lev only for medications, and the food… at least 200–300 lev on top of that. Diabetes is an illness for rich people, not for poor people. (Bulgarian 19)
Financially it is very difficult to cope with all three illnesses. The medications for my heart, the diabetes, and the high blood pressure cost me 100 lev [a month], and for a pensioner with a 200 lev pension it is not possible to cope. (Bulgarian 4)
Unsurprisingly, the necessity to understand food ingredients was less frequently discussed by Bulgarian respondents; ready-made meals and eating out being unaffordable or not widespread. However, like our UK respondents, Bulgarians found it difficult to interpret market information and food labelling in relation to health messages, with respondents relying on commercial branding of ‘diabetic’ or ‘diet’ foods as a guide to food suitable for people with diabetes.
Diabetes as a personal failure
I don't eat between meals and I don't have supper. Now my daughter's mother-in-law (she's dead now), she was a diabetic, very, very plump and she had a couple of bad heart attacks. She used to stuff herself like anything: well she was allowed to have either two scones or toast or crumpets before she went to bed. I think her sugar used to drop a lot at nights. Now I don't have supper. I don't have anything to eat before I go to bed. Once I've had my meal at 6.00 pm or 6.30 pm, a sandwich, beans on toast or something like that, that's it. [UK 14)
This type of account however was atypical in the Bulgarian interviews. A link between diabetes and being overweight was only discussed in one interview, where a 70-year-old woman from Sofia explained that it was having diabetes that led to her putting on weight.
I do not want to be ill in the eyes of other people; I do not want this to be visible to others. I am trying to hide that I am ill. … When they give you a chocolate for somebody's birthday you do not say that you've got diabetes, you take the chocolate because you feel uncomfortable, but they wait for you to eat it and you do eat it because you feel uncomfortable to publicly announce that you have an illness. You feel a disabled person different from the rest of society. … The dominant feeling is one of isolation, a second-rate person. (Bulgarian 19)
This has cost me a great psychological battle in the process of my work. I have been hiding this for many, many years that I have diabetes. Whenever I had to I have been hiding in toilets, in corridors, so that there would be no one around… employers do not like ill people. Why should we try to deceive ourselves? And help of any kind, a nudge, a bit of support here and there, social and material support? Forget about this! There's no such thing at all. This has been very difficult for me over the years. I have cried a lot … I have not had an opportunity to contact groups of people [with diabetes], but as I told you … I am somehow trying to avoid such contacts. It is very strange … I have never considered myself to be ill. I emphasise that! (Bulgarian 22)
My daughter always helps me financially. How can I pay for all this myself? I've got my daughter's full support, financial and moral support. Without her it is a non-starter. She has always helped me, in the past, at present, always. (Bulgarian 17)
Integrating illness management with valued activities
I used to be very active, I was playing football, jogging, but now it has changed a little bit, I think it's because of old age, I'm just doing these exercises for my health, for diabetes, because the doctor told me you have to do some sort of exercises. (UK 17)
A retired UK respondent explained how he started volunteering when he was still employed, but after retirement volunteering started to take most of his time. This allowed him to have ‘something to aim at … and it does away with any boredom’ (UK 25), but it also gave him the satisfaction of doing something for others.
In the past I used to go with groups for walks, for excursions, but they used to give us a bit [of money] through social services … but this is now gone. We could also use a travel discount in the past, but they abolished that as well. So, now I don't go anywhere because everything is very expensive, and I only go for walks in the park. Now I restrict myself a lot. I used to do lots of things in the past, now I cannot. I would now only go to an event if it is for free. If I have to pay: no chance. (Bulgarian 15)
The impact of the withdrawal of state support and the subsequent impoverishment could be detected in the de-differentiation of leisure, work and physical activities. The notion of ‘work,’ understood as doing something useful operated as an overarching reference point for addressing financial, emotional and health needs. Thus, a respondent living in a rural area said that there was always work (as something that needs doing) when you lived in a village while another one said that his hobby was to work: ‘it gives me pleasure to do things to be occupied with something. This keeps me going’ (Bulgarian 24). Physical activities tended to be linked to discussions of work: ‘more labour, more work and I feel better. I am active every day, I work every day’ (Bulgarian 8).
For me the most important factor is to be occupied with doing things, like … every day … with the children [in the school where she is working], time goes quickly, I work with pleasure, it is as if I am playing a game … I am useful to other people and useful for myself. I feel calmer like this, and I do it happily. I earn some income, which is little, but I feel well while doing that. … if I didn't work I would feel worse (Bulgarian 3).
Trustworthiness of the healthcare system
I've been very lucky with the consultants and the doctors, very, very lucky but you see this is the other thing people don't realise, if you do what they say they will help you a heck of a lot, if you don't do what they say or do it in bits or pieces or that they don't want to know. It's so simple, as long as you do what they say they're always happy as a bug in a rug. … I think you'd only have problems with that if you didn't do what they said because they think ‘Well, I'm just wasting my breath’. (UK 4)
The care by healthcare professionals is good. My GP and the endocrinologist are both very polite and caring. [Name of endocrinologist] immediately gave me a leaflet about what I can and cannot eat. … The doctors do not give me any information or leaflets regarding this [diabetes]. It's been so many years already and they do not give me any information … about new medications … no information at all, they just prescribe medications. I don't understand why? Is this how it should be? (Bulgarian 17)
Bulgarian respondents reported their confusion over experiences with healthcare professionals ranging from heroic levels of support to the disregard of patient needs and untrustworthiness. This included stories of putting patients on a drug treatment that might be unnecessary and gave them no benefit (Dowrick and Frances 2013) but was also unnecessarily expensive or harmful. In Bulgaria patients addressed this unpredictability mostly by looking for second and third opinions from different professionals or by looking for advice from professionals who were members of their own social network. Professional trustworthiness in Bulgaria could be guaranteed only through pre-existing familiarity and interpersonal trust.
I wrote in internet ‘Диaбeтнo бoлни’ [people with diabetes] and the first hit that came up was the Novo Nordisk site. All other sites were commercial ones. (Bulgarian 19)
Discussion
The impact on CIM of neoliberal policies of deregulation, marketisation and reducing the size of the welfare state are rarely compared across settings. This comparison between narratives of CIM in Bulgaria and the UK offered insights into the divergent experiences of people with CI and on the contextual articulations of macro level processes. CIM narratives in the UK were primarily framed within a discourse on individual responsibility (Henwood et al. 2011). Diabetes management was seen by respondents as an extension of a more generic notion of healthy lifestyle and people's everyday life. In Bulgaria CIM discussions were dominated by the lack of resources, access to good quality food and medications. The main concern of our Bulgarian respondents was about accessing the most appropriate and best quality medications, and the costs and impact of the condition on other parts of their life. Unlike our UK respondents they could also draw on a socially available discourse within which financial difficulties were accepted as being structurally generated and unrelated to the capabilities of and choices made by individuals.
In the two different cultural spaces discussed here, the main emphasis is on either chronicity (Bulgaria) or manageability (UK). This opens different spaces for individual agency. In the UK narratives of poor health are associated with two types of moral failure: a failure of character, will, restraint and knowledge; and being a ‘burden’ to society. These failures were experienced as shameful and inspired little sympathy in others. In Bulgaria, where the emphasis in CIM is biomedical, the main focus of respondents is on the lack of a cure. Having diabetes was a form of disability (‘being ill’ and thus ‘less capable’ to do ‘normal’ things), and was therefore primarily experienced as a crisis in which the causes were of little relevance. Being ill in Bulgaria is an irreparable problem that evokes sympathy. This only opens space for what could be described as incapacitated agency, where problems cannot be resolved through rational action whether or not one practices effective self-management.
Despite the differences in how CIM is experienced in Bulgaria and the UK, respondents in both countries faced challenges related to poorly regulated markets. The UK respondents found it difficult to translate generic diet advice into everyday practices when navigating the complex food market. To do so successfully required considerable effort. This included the capacity to deconstruct product content as presented by retailers and then reconstructing it as per its affordability and their health needs, personal and social priorities and obligations. Similar confusion was expressed by Bulgarian respondents in their interaction with the healthcare system and particularly in making choices between different medications. Trusting informants and healthcare professionals was an ad hoc process in Bulgaria, where interpersonal networks and familiarity were the only alternatives to relying on market signals of quality, such as the price of medications or the volume of demand for services. Navigating their needs in such conditions was further complicated for the patients by the poor state regulation of pharmaceutical companies and their unrestricted access to health practitioners. Systems of self-regulation that would protect consumers of health care have failed to emerge naturally, while state monitoring and regulation have instead been replaced by a multitude of information sources dominated by the interests of large market players such as drug companies. These findings appear to diverge from the currently neoliberal focus on individual choice both as a tool for individual empowerment and as a mechanism for regulating the provision of healthcare services (Mol 2008).
One of the stark contrasts between Bulgaria and the UK was difference in the relevance of the responsibilisation agenda in the two countries. It could be argued that the rapid withdrawal of the Bulgarian state from providing social support to its citizens and the association in public discourses between welfare provision and (the construed as failed) socialist ideology have effectively eliminated the need to legitimise reducing the size of the state. In contrast, the British state, which remains interventionist and committed to high social expenditure, has put a strong emphasis on individual responsibility for CIM as a mechanism to achieve efficiency in the health services and reduce the state's healthcare expenditure. These different state configurations appear to have led to the realignment of stakeholder coalitions. The most notable of these is the alignment of the interests of healthcare professionals and private companies in Bulgaria, leading to high private expenditure on medications and the proliferation of health information sources, where evidence and advice are closely intertwined with the profit motive. People with a chronic illness in Bulgaria are also more likely than UK users to behave as consumers, as evidenced by the much higher rates in their utilisation of healthcare services. The Bulgarian version of neoliberalism can be described as logic of unmanaged consumerism where the regulatory and redistributive role of the state is minimal, placing high pressure on health consumers to navigate the market.
In contrast, there is growing emphasis on administrative monitoring and control in the UK healthcare system. While bureaucratisation undermines the self-regulating capacity of the medical profession and creates tensions between the imperatives for efficiency and the quality of care, it also implies the need for evidence and accountability, thus limiting the direct impact of private interests in the decision-making process. It could also be argued that the overemphasis on responsibilisation in the UK health care and the growing emphasis on transparency and bureaucratic monitoring have affinities with an articulation of neoliberalism described as logic of managed choice.
While increasing responsibilisation, reducing the size of the state, the privatisation of public resources and the introduction of market regulation are all relevant in both Bulgaria and the UK, their relative significance varies and their articulation is co-shaped by different contexts and histories. These include the legitimacy of the welfare state – high in the UK and low in Bulgaria – and the stage of the care transition (Bury and Taylor, 2008). The latter refers to a shift where choice, self-management and active engagement in health become features of a restructured patient role involving changes in professional practice, with an emphasis on evidence-based practice and shared decision-making (advanced in the UK and at very early stages in Bulgaria). Thus what we call logic of managed choice in the UK is characterised by state involvement operating with significant levels of bureaucratisation, monitoring the control of cost and quality, surveillance and emphasis on a sense of personal responsibility for one's own health and resource utilisation. This implies the presence of a high degree of patients' trust in professionals and an arms-length relation between users, prescribers and the producers of medications (Pilgrim et al. 2010). In contrast, the logic of unmanaged consumerism in Bulgaria involves limited state involvement, with the dominating relations between health professionals and pharmaceutical companies resulting in maximum prescription and cost to patients. Minimum levels of trust characterise relationships between stakeholders, which makes exercising consumer choice and utilising extra-market mechanisms for health advice (such as personal networks and personalised trust) a necessity. The latter implies that patients need to undertake substantive system navigation work, creating also high demands on health professional time.
Study limitations
These findings are based on a study of people with diabetes in two countries. Further research could explore these findings in relation to different populations and national settings and can offer richer conceptualisation of types of neoliberal regimes and the implications for people with long-term conditions.
Conclusion
Comparisons of national and institutional contexts offer insights into the mechanisms and pathways by which macro level processes impact on people's experiences of long-term condition management and can help distinguish between necessary and contingent processes when examining arguments advanced to justify the deepening of neoliberal reforms. The contrasting role that the responsibilisation agenda plays in the UK and Bulgaria helps to examine the contextually specific rearrangement of interest, coalitions and power dynamics. Whilst the two neoliberal logics described in this article require high levels of patient and professional work, it is only in Bulgaria that most additional work goes towards ensuring the smooth functioning of the market, with patients carrying most of the financial and time burden of market failure. Thus, while the experiences of people with diabetes and the current state of healthcare provision in Bulgaria can usefully project one of the possible futures for the UK, it can also inform debates for viable alternatives within and without the neoliberal frame.
Acknowledgements
This research has been funded by EU FP7 Collaborative Research Grant for the EU-WISE project and National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care, Wessex. The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research, or the Department of Health. Ethical approval was granted by the University of National and World Economies) and the National Center for Public Health and Analysis.
