Who wants to be an Expert Patient?
The UK government's self-help programmes for the long-term sick blur the boundary between medical and social problems.
The notion of an expert patient may sound odd, but it is a rising star in the firmament of current health policy. While you may not have heard of the Expert Patients Programme (EPP), chances are you soon will, especially if you are one of the estimated ‘60 per cent of adults’ whom the Department of Health (DoH) claims ‘report some form of long-term or chronic health problem’ (1).
Whether or not the UK National Health Service (NHS) is going to be able ‘to deliver the expert patient programme or disease specific self management programmes on this industrial scale’, remains to be seen, as informed commentators have queried (2). Nonetheless, despite all the challenges of getting courses up and running, including standing on streets handing out leaflets and enlisting NHS staff with long-term conditions to become trainers, the programme is now well underway, with some 18,000 people having completed the course (3). The DoH is unequivocal in its stated intention to have the EPP ‘rolled out throughout the NHS’ by 2008 (4).
According to the DoH, the EPP ‘provides group-based, generic training and is delivered by a network of trainers and volunteer tutors all living with long term conditions themselves’ (5). In contrast to disease-specific support groups, the EPP promotes a more general approach, in which an average of 11 people with a variety of conditions – ranging from HIV AIDS, Parkinson’s Disease, Arthritis and Polio, through to back-pain, ME, irritable bowel syndrome, ‘Syndrome X’ and ‘seasonal affective disorder’ – meet up for two-and-a-half hours per week over the course of six weeks. At these meetings a group will cover a set list of topics, ranging from fatigue and fitness to depression and relaxation, with an action plan agreed for every individual at each session.
Courses are led by a layperson, who has a chronic long-term condition but no professional expertise in the area. All attendees get a copy of Self-management of Long-term Health Conditions: A Handbook for People with Chronic Disease (6), a specially commissioned version of a guide developed in relation to the original chronic disease self-management programme at Stanford University, California, under the guidance of Professor Kate Lorig, who first devised the model (7). In so doing, she drew upon psychologist Alfred Bandura’s ideas around self-efficacy, as rooted in social cognitive theory. One of the leading exemplars of this approach has been the American healthcare provider, Kaiser Permanente, from whom the NHS has been keen to learn in recent years (8).
Self-efficacy is a key aim of the EPP. Its meaning is simple; if you believe in yourself, you are more likely to succeed. Conversely, self-doubt is a self-fulfilling prophecy (9). Breaking the cycle of low self-esteem requires a bolus of optimism, as facilitated through a modelled programme of disclosure and support. Which is where the group of fellow sufferers comes in, as led by someone with similar experience and a ready-made agenda of motivational change. Over the course of six weeks, members of a group get to know each other well, supporting and affirming the experience of each in the interests of the emotional development of all. In the words of one of its main protagonists, the EPP model of care is about ‘behavioural interventions to address psychosocial needs’ (10).
Where has this novel and ambitious programme come from, and what does it hope to achieve?
Scope and novelty
In many ways the EPP might be understood as an extension of themes already well established within health policy. It was first flagged as part of the Healthy Citizens initiative in the White Paper Saving Lives: Our Healthier Nation (1999), which developed an emphasis in the previous Green Paper ‘on trying to get people to live healthy lives, where necessary by changing their lifestyle’ (11).
Such an emphasis was not entirely new. Back in the days of Old Labour, in the 1970s, the problem of ‘personal behaviour; what might be termed our lifestyle’ was already well established (12). Indeed, this is an emphasis that stretches right back to liberal reformer William Beveridge’s five giants, of want, idleness, ignorance, disease and squalor, and before that even, to the Fabian dawn of the welfare state.
The behavioural bent of the EPP is also, to a certain extent, unexceptional. All governments seek to shape norms of behaviour in relation to health, as in all other areas of personal life, as part of the meld of public and private interests we call civil society. ‘Behaviour change often – if not always – lies at the heart of complex policy issues’ acknowledges the Prime Minister’s Strategy Unit (13). A vigorous polity requires an active sense of personal responsibility rooted in everyday life, and anyone with a stake in the existing order will understandably have a view as to the merits of one kind of behaviour over another. Taking responsibility for one’s long-term condition can be regarded as a logical extension of this same outlook.
Indeed, in the context of an ageing population and many millions of persons with a chronic long-term condition making significant demands upon the NHS, where expenditure is already at record levels, the case for a stronger emphasis upon self-care seems clear (14). With statisticians noting an ongoing ‘decrease in the proportion of households containing the traditional family unit – couple families with dependent children – and an increase in the proportion of lone-parent families’ (15), informal sources of support for those with chronic long-term conditions are becoming less of an option.
The provision of ‘personalised, yet systematic on-going support’ (16) for those who need it makes sense in the context of a more atomised and ageing population. One might decry the relative paucity of familial support and lament the need for systems of care based on a National Service Framework rather than empathic sentiment, but one cannot gainsay the need for a solution of some kind to the issue of chronic long-term conditions.
However, it should be noted that there is a direct link between attempting to engage half the population in the Expert Patient Programme and half the population claiming invalidity benefit. A population ‘fully engaged’ with health is in fact fully engaged with being ill. This cannot be a healthy situation either for the individual or for society. So what makes the EPP so attractive to policy-makers, and to those patients involved in it?
The death of the sick-role
Because the EPP reflects and extends many previous practices within the NHS and welfare policy more broadly, it can hardly be considered unique. What is new, however, is the cultural context within which this initiative is being developed. This context is complex, but amid the flux a pattern is discernible.
To one side stands the political class, struggling to connect with those it deems to represent. To the other stands the average individual, getting on with life, but increasingly disconnected from the informal and formal mechanisms that once bound them to a wider web of family, community and society. Between these two poles, of public and private, lies (among other things) the medium of health. In this context, personal health has come to play the role of an emotional bridge between two lonely outposts, and ‘the exploitation of our longing for connectedness’ that it facilitates (17).
It was not always like this. A brief reflection on quite recent history should remind us of a time when people were more outward-looking, more engaged with other people, with society and social questions; when individuals’ interactions with the state were played out through their relationship with politics and social institutions. Then people were more confident and independent – now they are more anxious and insecure, and responsive to official initiatives offering support and reassurance. Then they threatened the government and demanded pay rises; now they complain of stress and ask for counselling. Then they resisted healthy lifestyle advice and interference (sometimes even if there was a good case for it – for example, the compulsory wearing of seat-belts in cars); now they seem to want more of it (even if the evidence for certain initiatives is slender, or even non-existent – for example, the new campaigns around healthy eating).
In little more than a decade, individuals seem to have turned in on themselves, preoccupied with their bodies and their personal lives – which have become a focus for public scrutiny and regulation. One solution that seems to have been recognised all round, consciously or not, is to inflate the currency of health, and in the process engender a new morality of illness as legitimate lifestyle identity – a decadent citizenship. The EPP is an expression of this morality.
Ends and means
In reaching out to the needs of isolated and often unhappy individuals the government is responding to a real need. The need is not clinical, such as biomedicine attends to, but existential, effecting a ‘cure’ at the level of the imagination. Listen to the emphasis of those who have completed the course and one hears the same points made over and over again: that it ‘works’ to the extent that it reorients a person’s sense of self.
The government claims that the EPP works by ‘giving people the confidence, skills and knowledge to manage their condition better and be more in control of their lives’ (18). And certainly, in reading the various testimonials on offer, a recurring theme is confidence, with the most inspired participants electing to become facilitators themselves, and have the chance to take others down that which one Strategic Health Authority lead terms ‘the path of the righteous’ (19).
For one EPP trainer, this was a path to ‘more challenging goals’ that now includes ‘running three to four miles, five times a week’. For another participant, ‘The most important thing…is the confidence the course has given me – I would never have dreamed of training to lead a course like this before – now I want to share the techniques with other people’. Another ‘was a lost soul…. Then I heard a talk on the EPP…and that is where my journey started…. I am now…a trained tutor’.
Elaine has ‘been a tutor for a year and I cannot believe how much this has transformed [her] life’. David now has ‘ample self-confidence and high self-esteem. Delivering the course serves as a constant reminder of self-management techniques’. Sue, ‘alone and lost no longer…began to see the light…the confidence came back’. Now she is ‘a tutor helping others find the pearl that with a little nurturing has power to change their world’. (20) Talk of a ‘life changing experience’ that boosts ‘self esteem’, and of a ‘spark that caused a revolution in my life’ recur throughout the EPP.
Clearly, many who attend an EPP find the experience rewarding. But the emphasis upon the transition from course participant to group leader is indicative of the kind of confidence, skills and knowledge being ‘modelled’. While for some the EPP will undoubtedly work as a springboard, from which to bounce off into other spheres of life, for many it is clear that the group itself has become a therapeutic relationship.
And what is so wrong with that, one might ask? Why deny the manifest benefits of such a forum to those with few other options? If a mainly white, middle-class, older, female audience (21) find the EPP helpful, why say otherwise?
Of course, much the same facility as the EPP has, in the past, been provided by informal community and religious organisations, from the Townswomen’s Guild to the local darts team. In their absence, one might argue that the state has something positive to offer, bringing together individuals who might benefit from a little company, a cup of tea and a degree of structure. In such circumstances it is no wonder that the DoH can show data demonstrating positive outcomes, that attendees feel better about themselves (22).
Many participants on the EPP would prefer a disease-specific course, particular to their own long-term condition. The DoH, however, insists upon mixed, generic courses. A ‘disease specific course may reinforce the medical condition/disease’ but a generic approach ‘adds richness and awareness’ (23).
The awareness of a group that has come together on the basis of chronic long-term conditions is not a foregone conclusion, but an open-ended opportunity. In the absence of a preordained script, it could go off in any direction, perhaps emulating those who triumph over adversity. Like Stephen Hawking, for example, who has maintained a sunny outlook, despite all (24).
In a similar view one might consider the blindness of former home secretary David Blunkett or Radio 4 presenter, Peter White, both of whom have been successful in their respective fields. Or Dennis Potter, diagnosed with psoriatic arthopathy at the age of 24 but an accomplished playwright and ebullient to the end. Or Ian Dury, who lived with the effects of polio acquired at the age of seven. When invited to comment on his long-term condition on a BBC documentary, Dury replied, in characteristically satyric mode:
‘If I’d never had a girlfriend or a nice pair of trousers, or a smart haircut or if I hadn’t been a good-looking bastard. If I’d have never had a nice job of work, I think I might have had the hump over having polio; but as it was I’ve had a very fulfilled life ever since I was a young sprog.’ (25)
Lyrically and existentially, Ian Dury wrote his own script. Health literacy seems not to have scored highly for the protagonist and author of Sex & Drugs & Rock & Roll (1977), a reason to be cheerful if ever there was one.
But for those who attend the EPP in the company of others with a long-term condition, the script is already drafted. The self of self-efficacy is co-produced, rather than self-determined. Awareness is not simply unearthed, but constructed afresh. The therapeutic – curative – dynamic is a function of emotional conformity, wherein ‘confidence’ is proportionate to parameters drawn in the imagination. Anyone can score a six if the boundary line is drawn close enough.
The EPP claims that it ‘addresses the “whole person” and not just their illness or disability’ (26) as revealed in ‘the power of the patient story’ (27). Getting people to tell their story demands a special kind of recognition, quite different to that encountered in everyday life. This ‘is usually done by modelling disclosing personal information’ by the facilitator, demonstrating an appropriate level of emotional performance.
Of course, on occasions participants might ‘disclose extensively, at an inappropriate time or in an inappropriate way’ and thereby present the facilitator with a delicate challenge. But, as one Health Psychologist reports, such dilemmas tend not to get out of hand: ‘on every occasion the group as a whole, responded empathically and were prepared to say more about their own experience.’ (28)
To become ‘more relaxed about sharing emotional distress’ in a group setting requires participants to acknowledge each others’ vulnerability. The essence of this is that sharing be truly mutual, with one contribution flowing easily into another. Disclosure is the name of the game; emotional equilibrium being reached when everybody’s contribution is reciprocated by all others. At this point, mutual vulnerability is the binding quality of the group, whose dynamics will have been shaped, from the outset, by the trained facilitator.
Every week all course participants are requested to set achievable goals for themselves, which they report back on at the next meeting. In sharing this information a narrative of existential achievement is constructed in relationship to organic impairment, which by turn becomes a badge of authenticity. Cohesion within the group is contingent upon confession as rooted in a sickness identity.
Many groups continue to meet long after the six week courses have finished: ‘a large and lively “EPP Social Group”, set up and run by participants for participants’ is a logical outcome of such an exercise. At the end of each EPP course participants are asked ‘“Do you want to stay together as a group?” They always say “yes please”, because they have done so much soul-baring together.’ (29)
The wider agenda
Beyond the immediate experiences of group members, the EPP serves a wider role, as a model for therapeutic policy making. Because it has less to do with the management of chronic long-term illness than it has to do with the shaping of emotional horizons – and is correspondingly more like group therapy than clinical management – the EPP is well suited to a wider audience. This point is implicit in the Department of Health’s often repeated claim that 60 per cent of the adult population are eligible, and explicit in the comments of the former chair of the Expert Patient Programme Implementation Group, which argued that ‘the principles underlying the expert patient programme could be extended to the whole population’ (30).
Which, indeed, is true. The principles underlying the EPP are the same as those informing all current health policy. It is one part of the wider package of self-care, which ‘involves active citizenry and public engagement’ and ‘is also about attitudes and behaviours’ (31). The government has committed itself to the remarkable objective of a nation ‘fully engaged’ in health, an aim it will one day surely rue: the more one peers into the abyss of health, the giddier one gets. Until then, Choosing Health, as the recent White Paper is called, is less an invitation than a command. As health secretary John Reid says, the ‘success of the strategy will be measured…in the increased number of healthy choices that individuals make’ (32). Success is contingent upon the right kind of choice – which is clearly no choice at all.
The DoH is frank about the wider remit of ‘the “self-care” or “expert patient” approaches’, confirming a ‘need to extend this approach into prevention before people develop illnesses’. Of course, this is precisely the logic of the preventive paradigm outlined in the report of the ex-banker turned health policy guru Derek Wanless (33), and so enthusiastically embraced by government in its White Paper. But if the same approach works in a preventive as in a curative context, then what is it that is being prevented, or cured?
The answer to this is society itself, the reconstruction of which is increasingly understood through the looking glass of health. By ‘encouraging patients to participate in community programmes’ and ‘encouraging people to form self care support networks to provide peer support to one another’ (34), the inter-personal sphere is brought into sharp focus as the crucible of collective and individual wellbeing. Attending to one’s social network is accorded the same preventive status as attending to one’s diet.
This is of a piece with the government’s ‘shift in public health approaches from “advice from on high to support from next door”…offering practical support instead of preaching’ (35), an emphasis on health as social capital that echoes throughout social policy today. Relying ‘on GPs and other trusted health professionals as agents of persuasion’ (36) and obliging pharmacists to engage you in ‘opportunistic advice on lifestyle and public health issues’ (37) is all well and good, but catalysing friends and neighbours to do it for you is ultimately much more effective.
The logic of this trend can be seen in the ambitious plans for ‘NHS health trainers…the fundamental building blocks for health improvement in the NHS to provide much needed new capacity and approaches to tackling inequalities’. Note the emphasis here, with regards a whole new cadre who ‘will come from local communities and work as part of NHS primary care services’ and along the way regenerate local communities by ‘creating jobs for local people that in turn support improvement in health across the communities they come from’ (38).
Amid such surreal surroundings, where we all feel each other’s pain as we take in each other’s washing, the EPP begins to make perfect sense.
Expertise and patient-hood have always been relative categories. In the past they were relative to one set of values, where expertise was a function of authority and patient-hood a place on the moral margin. Now they are relative to a different set of values, characterised by an emphasis upon the vulnerable, atomised, and ultimately sick subject. Indeed, defining people as sick is one way of engaging and including them. And the fact of the matter is that many people today welcome such recognition and willingly adopt a sick-role, precisely in order to be included and not left out in the existential cold.
In extending a hand of support to atomised individuals the government is also inviting others to reach out towards it. But this is not a meeting of equals. It is an offer to partake of the warm rewards of group therapy on terms prescribed by government, for whom the NHS is the last remaining legitimate link between itself and the electorate. For a political class that seems to have abandoned politics, at least in the sense of big ideas and leadership, the attraction of personalised health plans and the like are immense. In feeling our pain as a corporate aim, the government indicates how much it cares about us all, and hopes we will reciprocate.
In boosting the business of health, government inflates – and devalues – the currency of sickness. The pool of suffering gets wider, but shallower too, with a corresponding diminution in the quality of compassion. This is the paradox of therapeutic politics, which dilutes the language of care to the point that it becomes a convention, rather than something we elect to do, and thus neutralises the very quality it aims to nurture. The same is true of expertise, the true meaning of which is lost when applied to patients.
The solution is surely to demand real experts who warrant the trust of the public and speak with the authority required by a sick person. Beyond the confines of the clinical encounter, ordinary everyday unhappiness should be left to find its own level, not ‘modelled’ by those for whom health literacy is synonymous with citizenship.
Stephen Bowler is a lay member of South Sheffield Local Research Ethics Committee.
(1) The NHS Improvement Plan: Putting people at the heart of public services (2004) p.34
(2) Wilson, Tim, David Buck, and Chris Ham. 2005. ‘Rising to the challenge: will the NHS support people with long term conditions?’ BMJ 330(7492):657-661.
(3) EPP Update Issue 12 March 2005
(4) Health, Department of. 2004c. ‘The NHS Improvement Plan: Putting people at the heart of public services.’ Pp. 80. NHS. p.36
(5) Health, Department of. 2005c. ‘Supporting People with Long Term Conditions: An NHS and Social Care Model to support local innovation and integration.’ Pp. 48. Department of Health. p.31
(6) Programme, Expert Patients. 2002. Self-management of Long-term Health Conditions: A Handbook for People with Chronic Disease. Bull Publishing/NHS Expert Patients Programe.
(7) Lorig, Kate, Halsted Holman, David S. Sobel, Diana Laurent, Virginia Gonzalez, and Marian Minor. 2000. Living a Healthy Life with Chronic Conditions, 2 ed. Bull Publishing.
(8) Professor Albert Bandura: Overview of social cognitive theory and of self-efficacy, Publications related to self-efficacy; Pajares, Frank. 2002 ; See Feachem, Richard G A, Neelam K Sekhri, Karen L White, Jennifer Dixon, Donald M Berwick, and Alain C Enthoven. 2002. ‘Getting more for their dollar: a comparison of the NHS with California’s Kaiser Permanente.’ British Medical Journal 324(7330):135-143, Ham, Chris. 2003. ‘Learning from Kaiser Permanente: a progress report.’ Pp. 10. Department of Health, Reid, John. 2003. Learning from the market – not copying it
(9) Bandura, Albert. 1994. ‘Self-Efficacy.’ Pp. 71-81 in Encyclopedia of human behavior, edited by V. S. Ramachaudran. Academic Press.
(10) Sobel, David S. 2003. ‘Patients as Partners: Improving Health and Cost Outcomes with Self-Care and Chronic Disease Self-Management.’ NatPaCT. (11) Health, Department of. 1999. ‘Saving Lives: Our Healthier Nation.’ Health, Department of. 1998. ‘Our Healthier Nation: A Contract for Health.’ p.2
(12) Health, Department of. 1976. ‘Prevention and health, everybody’s business: a reassessment of public and personal health.’ Pp. 96. Department of Health & Social Security. p.17
(13) Halpern, David, Clive Bates, Greg Beales, and Adam Heathfield. 2004. ‘Personal Responsibility and Changing Behaviour: the state of knowledge and its implications for public policy.’ Pp. 70. Prime Minister’s Strategy Unit. p.5
(14) Quite how many million is uncertain: John Reid identifies ‘17.5 million people suffering from a chronic disease in England’. Some DoH documents offer the same number, but include Scotland and Wales. And some DoH documents state that ‘at least one person in three suffers from a chronic disease’. The NHS improvement plan (2004) figure is 60 per cent of adults, which even if only a figure for adults in England would be around 24 million. The General Household Survey for Great Britain (2002) reports that the ‘prevalence of reported longstanding illness has increased from 21 per cent in 1972 to 35 per cent in 2002. p.86. In the UK ‘about 80 per cent of GP consultations’ are with people with long-term health problems. Department of Health, 2004c. ‘The NHS Improvement Plan: Putting people at the heart of public services.’ Pp. 80. There is a huge literature on chronic disease self-management: See, inter alia, DoH 2005, ‘Self care support: A compendium of practical examples across the whole system of health and social care’; Chronic Disease Prevention and Management – Sharing Health Care Initiative conference page
(15) Summerfield, Carol , and Baljit Gill (eds.). 2005. Social Trends: No. 35. Office for National Statistics. p.21
(16) Health, Department of. 2005c. ‘Supporting People with Long Term Conditions: An NHS and Social Care Model to support local innovation and integration.’ Pp. 48. Department of Health. p.8
(17) Freie, John F. 1998. Counterfeit Community: The Exploitation of Our Longings for Connectedness. Rowman & Littlefield.
(18) Moving from Patient to Person, on the Expert Patients website
(19) EPP Update Issue 10 p.8.
(20) EPP Conference Special; EPP Update Issue 12; EPP Update Issue 8
(21) Internal Monitoring Analysis of the Expert Patients Programme as at January 2004
(22) Internal Monitoring Analysis of the Expert Patients Programme as at January 2004
(23) ‘Our amazing tutors’ EPP Update Issue 12 p.15
(24) ‘I try to lead as normal a life as possible, and not think about my condition, or regret the things it prevents me from doing, which are not that many’ writes Professor Stephen Hawking: ‘(A)lthough there was a cloud hanging over my future, I found, to my surprise, that I was enjoying life in the present more than before. I have had motor neurone disease for practically all my adult life. Yet it has not prevented me from having a very attractive family, and being successful in my work.’
(25) Ian Dury (12/5/1942 – 27/3/2000) in BBC2 documentary ‘On My Life’ (Screened 25/9/1999; Director Mike Connolly, Executive Producer Mark Cooper)
(26) The Expert Patients: A New Approach to Chronic Disease Management for the 21st Century p.31
(27) EPP Update Issue 10 p.8
(28) Dr. Sally Corbett Lessons learned by health professionals leading a self management course: The Colitis Education and Support Programme (CESP)
(29) EPP Update Issue 12 p.14; EPP Update Issue 10 p.9
(30) Gupta, Sunjai. 2005. ‘Full engagement in health: Government programmes aim to improve engagement.’ BMJ 330(7485):255-b-.
(31) Health, Department of. 2005b. Pp. 71. Department of Health. p.5
‘Self care support: A compendium of practical examples across the whole system of health and social care’
(32) Health, Department of. 2004a. ‘Choosing Health: making healthier choices easier.’ Pp. 207. Health, Department of. p.7
(33) Wanless, Derek. 2004. Securing Good Health for the Whole Population. H.M. Treasury.
(34) Health, Department of. 2005c. ‘Supporting People with Long Term Conditions: An NHS and Social Care Model to support local innovation and integration.’ Pp. 48. Department of Health. p.41
(35) Health, Department of. 2004a. ‘Choosing Health: making healthier choices easier.’ Pp. 207. Health, Department of. p.106
(36) Halpern, David, Clive Bates, Greg Beales, and Adam Heathfield. 2004. ‘Personal Responsibility and Changing Behaviour: the state of knowledge and its implications for public policy.’ Pp. 70. Prime Minister’s Strategy Unit. p.39
(37) Health, Department of. 2004b. ‘The new contractual framework for community pharmacy.’ Pp. 47. Department of Health. Essential Service 4 – Promotion of healthy lifestyles
(38) Health, Department of. 2004a. ‘Choosing Health: making healthier choices easier.’ Pp. 207.
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