The patient movement as an emancipation movement

Abstract

Objective  To suggest that the patient movement is an emancipation movement.

Background  The patient movement is young and fragmented; and it can seem confusing because it lacks an explicit ideology with intellectual and theoretical underpinnings.

Methods  Drawing mainly on the experiences and the published writings of patient activists, the author identified eight aspects of the patient movement that could be compared with aspects of recognized emancipation movements: the radicalization of activists; the creation of new knowledge; the identification of guiding principles; the sense of direction; the unmasking of new issues; schisms within the movement and allies outside it; and the gradual social acceptance of some of the ideas (here standards of health care) that activists work to promote.

Results  Similarities between certain aspects of the patient movement and of the recognized emancipation movements were close.

Conclusion  The patient movement can be regarded as an emancipation movement, albeit an immature one.

‘Without intellectual and theoretical underpinnings, no movement can succeed…’ Carolyn Heilbrun ¹

Introduction

The many and diverse patient groups, individual patients and patient representatives, advocates or activists who want to improve health‐care for the sake of other patients can be said to constitute the patient movement. It is a ‘new’ social movement based primarily on its supporters’ values rather than on their socioeconomic disadvantages, as were many older social movements. ² , ³ But the patient movement lacks an ideology, a coherent set of beliefs to guide its members’ actions and explain them to the outside world. It is fragmented, immature, weak, and confusing. ⁴ , ⁵ , ⁶ Social scientists have categorized patient groups in various ways. ⁶ , ⁸ But a radical/non‐radical or conservative dimension or bipolar variable cuts across those categorizations. ⁷ Radical parts of the movement define some improvements to health‐care in such a way that those improvements result (or would result, if accepted) in re‐distributions of power between professionals and patients. This suggests that the patient movement is an emancipation movement in an early, pre‐ideological stage of development. To support this hypothesis, the author puts forward evidence and argument from radical patient groups, after some brief considerations of radical and conservative; of dominance and coercion; and of emancipation itself.

Radical and conservative

To be conservative in any sphere of human life is to accept the status quo. ⁹ To be conservative in health‐care is to accept as non‐problematic the practices, ideologies, and ethics of the dominant interest‐holders, that is, health‐care professionals, especially doctors. To be radical, is to uproot accepted assumptions, to see beneath the apparent meaning of things. ⁹ In health‐care, radicals challenge dominant practices, ideologies and ethics further than conservatives do. ⁷ Radicals’ views sometimes conflict with those of health‐care professionals; conservatives’ generally accord with them.

For the patient movement, the distinction between radical and conservative people and views is not always clear‐cut. Groups’ and individuals’ positions shift, depending on the issue as well as on political and emotional alignments. What is defined as radical or conservative depends also on when the judgement about it is made. Many ideas in health‐care that were radical and controversial yesterday have become conservative and accepted today. ⁴ Some ideas become so much part of the status quo, the way things are thought about and done, that their radical origins are forgotten. ⁴ Then a social movement that contains both (currently) radical and (formerly) radical elements is likely to seem confusing, if these progressive shifts are not understood both inside and outside the movement.

Dominance and coercion

The dominance of health‐care professionals is also complex. Although doctors and other clinical health‐care professionals are the dominant interest‐holders in health‐care, they are influenced by government health departments and executive health‐service managers and by pharmaceutical and other commercial companies. ¹⁰ , ¹¹ All dominant interest‐holders can use their power either to promote or to deny the interests of less powerful interest‐holders. ¹² But dominant interest‐holders tend to be coercive towards less powerful interest‐holders, both groups and individuals. ¹³ Coercion primarily means constraining, restraining or compelling by force. ⁹ But since the 19th century, it has also meant the moral coercion of power holders’ opinions. ⁹ Coercion may be open or covert. ¹² , ¹⁴ (Covert coercion is sometimes called paternalism, linking it to patriarchy, rule by men, which may help explain why the earliest challenge to medical authority came from the women’s health movement. ¹⁵ ) Whether open or covert, coercion tends to act against patients’ interests in various ways. In particular, it threatens their autonomy. ¹⁴ Autonomy is variously defined, but broadly means self‐determination and freedom from coercion, and is a fundamental value in western society. ¹⁶ Radical patient groups and individuals tend to discern and to oppose coercive elements in dominant policies and practices more readily than non‐radicals do. Conservatives either do not see coercive elements; or they accept them from sympathy or from alignment with health‐care professionals; or they see them as legitimate. ¹⁷ To the extent that radical patient groups work to oppose patients’ coercion and to secure greater support for patients’ self‐determination, they can be said to be liberating or emancipatory. ¹⁸

Emancipation

Emancipation means setting people free from the control of more powerful others, from subjection to them, from their ‘intellectual, moral or spiritual fetters’. ⁹ In broader political terms, emancipation movements question the arrangements between strong and weak groups and work to change them; the changes they bring about give more power to the weaker group than it had before and, at the same time, challenge both the forms and legitimacies of power in society. ¹⁹ The idea that the patient movement, through its radical elements, is an emancipation movement may seem startling. The medical profession’s ideological, political and structural dominance is well‐established and strong, largely because so many people simply accept them. ¹⁰ Much of what doctors do benefits patients and is consonant with their interests as patients would define them. In contrast, the patient movement’s lack of ideology is a mark of an immature social movement. ²⁰ Indeed, (radical) patient groups started in the late 1950s, so the movement is young. ²¹ A few notably radical patient groups, however, like the Association for Improvements in the Maternity Services (AIMS), and certain mental health‐survivor groups, call professional practice ‘oppressive’ and note its coercions. ²² , ²³ , ²⁴ Parallels between the patient movement and the women’s and civil rights movement have often been remarked. ⁴ , ²³ , ²⁴ Occasionally, a commentator uses the term ‘emancipatory’ to denote some specific policy that supports patients’ autonomy. ²⁵ , ²⁶ But a general view of the patient movement as itself emancipatory has not emerged.

Evidence and argument

To argue that the patient movement is an emancipation movement, the author puts forward evidence from radical patient activist groups and individuals and compares it with recognized emancipation movements. Here, activists are defined as radical patient groups and individuals trying to bring about change. Inasmuch as many of their radical ideas become accepted as the new status quo, they can be said to lead the movement. The author identifies seven lines of evidence: the radicalization of activists; their creation of new knowledge; their identification of guiding principles; their sense of direction; their ability to unmask new issues; the existence of schisms inside the movement; and radical activists’ allies outside it. Lastly, the author touches on the acceptance of radical ideas by health‐care professionals, managers and non‐radical patient groups. Although any aspect of health‐care could be discussed, the author focuses mainly on standards of treatment and care. Standards of treatment and care (in a wide sense) give patients their most personal experience of health‐care, often determining its clinical outcome and always affecting patients’ judgements of that care. Standards are descriptions of specific aspects of health‐care to which are attached prescriptive qualitative or quantitative values. The values can be drawn from any field of knowledge, thought, intuition, or experience. ²⁷ They are usually chosen by health‐care professionals; that is a mark of their dominance. Standards that undermine patient autonomy can be said to be oppressive; those that support it, emancipatory.

Radicalization

Patients’ complaints about health‐care often start from their perception that professional or institutional treatment or care threatened their moral identity as competent, rational and knowledgeable people. ²⁸ Radicalization is an intense reaction to the discovery of that threat. The reaction may be to a personal experience or to accounts of other patients’ experiences. ²⁹ , ³⁰ Or it may spring from intellectual or moral conviction. ²⁹ , ³⁰ Accounts of the experiences, feelings and thoughts of people who have become activists suggest that at least three conditions may be necessary for radicalization: the discovery of a harm or potential harm done to the self or to others by the treatment or care they have experienced; a sense that the treatment or care somehow affronted the self’s moral identity because health‐care professionals did not disclose the possibility of that harm beforehand, so that the patient could neither refuse the treatment nor accept it freely with the knowledge of the possible harm (‘If only they had told me…’); and the discovery that the self’s protests, requests or warnings, then or later, were disregarded. A sense of efficacy, the ability to get things changed, with a belief that other patients have had similar experiences and will want to join in working for change, are also necessary. ²⁰

Examples from accounts by people who have founded radical patient groups or become activists illustrate these points. The National Association for the Welfare of Children in Hospital (NAWCH) was founded in 1961 by Jane Thomas and Peg Belson with four other mothers who were affected by accounts of the plight of children subjected to separation from their mothers, though none of their own children had been in hospital. ³⁰ Few people knew that parents were allowed only very limited access to their children in hospital and parents usually only discovered this after their child was admitted. ³⁰ Then they found that they were prevented from acting in accordance with their wishes and their responsibilities to protect their child from stressful or dangerous separations. ³¹ After almost 30 years of effort by NAWCH national and local groups (meetings with paediatricians, civil servants and managers, conferences, surveys, visits to paediatric wards), restricted visiting was replaced by open visiting in all paediatric wards in the UK, i.e. the value for the standard of parental visiting was changed from a few hours a day to 24 hours. ³²

The Insulin Dependent Diabetic Trust (IDDT) was founded in 1994 by Jenny Hirst with another woman and three men who found that the synthetic insulin that pharmaceutical companies intended should replace animal‐derived insulin was worse for the safe control of their blood sugar levels (J. Hirst, personal communication). ³³ Neither their doctors nor the doctors in the British Diabetic Association believed patients’ accounts of their experiences with synthetic insulin, ‘…with our anger was also disappointment and disbelief’. ³³ The IDDT’s main objective now is to ensure that patients are fully informed of all available treatments and can choose their type of insulin. ³⁴

The Adverse Psychiatric Reactions Information Link (APRIL) was founded in 1998 by Millie Kieve after the death, possibly suicide induced by the drugs (medicines) she was taking, of her daughter, and her discovery that doctors paid scant attention to the already recorded serious side‐effects of drugs or to patients’ or relatives’ reports of suspected side‐effects. ³⁵ ‘[In the British Library I] found several papers and journals with references to the psychiatric adverse effects of all [her daughter’s] drugs. I felt I had opened a can of worms and that it was my destiny to do something about that wall of silence’. ³⁵ APRIL’s objective is to create awareness of, and protect patients from, adverse psychiatric reactions to drugs. ³⁵

Mitzi Blennerhassett became an activist when she found that her requests for information and for pain relief during the insertion of brachytherapy rods for anal cancer were disregarded. ³⁶ Nor had she been told, in consenting to the procedure, that the doctors doing it unsupervised had never done it before. ³⁶ She judged her treatment to have been ‘harsh, mendacious and unethical’. ³⁶

Looking back on these episodes and their consequences suggests comparisons with recognized emancipation movements. First, the radicalization that engenders these movements starts from disillusion with social, professional or institutional beliefs, policies, practices or standards. ³⁷ Disillusion destroys people’s beliefs and certainties. But in their place, illumination brings new beliefs and new ways of looking at familiar things. This process is called ‘awakening’ or the birth of ‘oppositional consciousness’ in emancipation (liberation) movements. ³⁷ Unquestioning or unconscious subscription to dominant interests, perceptions and values is lost for ever.

Secondly, strong feelings and convictions are involved, often including anger or a sense of injustice. ³⁷ But those strong feelings can be channelled into positive action. ³⁷ Emancipation movements call on the strong emotions that can be the basis for protest, for political challenge and for strategic thought. ³⁸

Thirdly, those strong feelings and convictions support a sense of duty or ‘principled commitment’ that characterizes activists in emancipation movements. ²⁰

Finally, an immediate, limited objective can be the precursor of further goals and wider political interpretations. NAWCH’s first campaign was to secure unrestricted visiting, but we can now see that it was also to do with autonomy, with freeing parents from coercion and enabling them determine their own actions. We can all take action before we see its meaning; and challenges to dominant interests and standards can be made long before those making them have enough experience and conceptual capital to analyse them theoretically. The women’s movement grew piecemeal. ³⁹ The first step to the emancipation of slaves in America promoted their education, not their freedom. ⁴⁰

The creation of new, emergent knowledge

New knowledge emerges from activists’ decisions that something needs to be done and from the need to meet opposition with argument and evidence. All social groups build up a knowledge base unique to their group. ² Patient groups draw on the experiences, knowledge, intuitions and perceptions of themselves and of people like themselves. This is sometimes called ‘lay’ knowledge or the ‘lifeworld’. ⁴¹ , ⁴² But radical groups in addition take knowledge eclectically from various academic disciplines as part of their armoury of opposition or counter expertise. ⁴³ AIMS, for example, blended observation, patients’ accounts of their experiences, anecdote, and dialogue with obstetricians and midwives with findings from social and medical science research to argue against the routine use of obstetric interventions in childbirth. ⁴⁴ NAWCH drew on Bowlby’s attachment theory to argue for unrestricted paediatric visiting. ⁴⁵ But studies of primate behaviour, findings on infection control, data on practice in paediatric wards and on variations among other specialists’ practice across the country, accounts of extreme distress to children and parents caused by severely restricted visiting, and psychoanalytic theories about the reasons for professionals’ hardness‐of‐heart, were also germane. AIDS activists challenged conventional biomedical science and drug regulation. ⁴⁶ Activist members of Radiation Action Exposure Group (RAGE), a group that exposed damage from external beam radiotherapy, against the first denials of doctors, taught themselves about fractionation regimes in order to challenge the Royal College of Radiologist’s views and standards. ⁴⁷ , ⁴⁸ APRIL activists collected and studied reports of adverse drug reactions and challenged the work of the regulatory authority. ³⁵ Consumers for Ethics in Research (CERES) and AIMS challenged the ethics of medical research as well as its scientific validity. ⁴⁹ These syntheses of different perspectives, levels and kinds of knowledge creates new knowledge that is neither professional nor ‘lay’.

Willingness to understand the technical aspects of health‐care professionals’ work and to use their vocabulary is crucial to radical patient groups, because it is usually necessary for arguing a case for a change in practices or standards. ⁵⁰ , ⁵¹ , ⁵² Dominant interest‐holders have to be challenged on their own ground; that is a privilege of dominance and a means of maintaining it. Opposing dominant interests requires great effort; sustaining dominance, very little. ¹⁰ But new knowledge can pick up clinical detriments to patients before professional knowledge does; and so can benefit it in the long run. RAGE’s work, for example, lead to changes in radiological practices and standards for all radiotherapy in the UK. ⁵³

It is sometimes supposed that familiarity with professionals and professional knowledge inclines activists to adopt professional perceptions and values – to go native. The reverse is as likely: the more activists know about professional assumptions and practices, the more they can see to deplore as well as to admire.

New or emergent knowledge helps release emancipatory movements from the intellectual fetters of dominant interest‐holders’ ways of seeing things. It underlies their identification of principles, their sense of direction and their ability to unmask new issues.

The identification of principles

Principles are fundamental rules or guides to action. ⁹ By the early 1980s, it became evident that activists tended to organize their criteria for judging standards as high or low around certain principles. Respect, information, access, choice, support, shared‐decision making, safety, equity, representation and redress were regularly put forward as key principles. ³² , ⁵⁴ They came to be seen as supports, direct or indirect, to patient autonomy. ³² , ⁵⁴

Social movements commonly appropriate principles from each other. ⁵⁵ Principles of the early US women’s health movement included information and respect. ¹⁵ The movement’s foci were personal autonomy and greater control over medical decisions. ¹⁵ Respect and information were also early principles of the US patients’ rights movement. ⁵⁶ Information, access, choice, safety, representation and redress were principles for commercial consumerism. ⁵⁷ (Consumerism supposedly elevated the status of patients to that of consumers, but activists wrongly assumed that consumerism’s commercial implications were irrelevant in a publicly funded NHS.)

Perhaps surprisingly, neither equality nor justice, principles from the women’s, the black liberation and the civil rights movements, are explicitly named in current lists of patient activism principles (as far as I know). It is probably a mark of the movement’s immaturity that they are not. Seeking equality is a weak group’s politically apt approach to a strong group that can coerce or oppress it, but whose skills and good‐will it needs. Justice has a strong moral appeal. Thus, homosexual activists press for justice and equal rights to medical care for homosexuals. ⁵⁸ Animal activists work for justice and respect for animals. ⁵⁹ Justice is, however, implicit in patient activists’ opposition to what they see as injustices in dominant interest‐holders’ personal and structural power to act coercively towards patients. Similarly, equality is implicit in the principle of shared decision‐making between patient and doctor. Exactly what is meant by equality is hard to define when there are some differences between sick and well people, between patients and health‐care professionals, which are not merely socially constructed. (This is the equality/difference debate, familiar to feminists. ⁶⁰ ) In essence, the equality for which patient activists work is equality of voice individually in patient–doctor clinical relationships and decision‐making. Thus, the IDDT declares that ‘patient views [should] carry equal weight [with clinicians’ views] in decision‐making about their treatment’. ⁶¹ Equality of voice collectively between doctors (and other health‐care professionals or managers) and patients (or patient representatives) in policy‐making should mirror that. ‘Power is the ability to take one’s place in whatever discourse is essential to action and the right to have one’s part matter’ is a feminist expression of the same double aspiration for equality of voice. ¹

In appropriating principles, patient activists may extend or refine their meanings. Thus, patient autonomy, in its strict definition of self‐determination and freedom from coercion, includes patients’ freedom to choose to depend on health‐care professionals’ advice as well as to question or reject it. It also includes patients’ freedom to act from a sense of interconnectedness with and responsibility for their families, communities and health‐service staff. ²² , ⁵⁴ Access and equity include the proviso that disadvantaged patients must be helped (if they wish) to benefit from the advantages that advantaged patients can take without help. ⁵⁴ Access and equity do not mean denying to all patients choices and opportunities that some cannot take unaided, as they do to some health‐care professionals. ⁶² , ⁶³ Activists seek to level up, not down. Information for patients means making available to them information of the same scope, evidence‐base and quality as health‐care professionals need. ⁶⁴ There are no theoretical limits to how much information, support, etc. patients should be offered, provided that each patient has the opportunity to reject what is offered and that any action the patient then takes is within the law and the norms and values of society. ⁶⁵

Identifying principles and giving them special meanings underpins a social movement intellectually and theoretically, just as new knowledge does.

Activists' sense of direction

Activists judge current and proposed policies, practices and standards largely by the extent to which they offer or reflect, in their particularities and details, more rather then less information, choice, support, and the other principles, as activists define them. So activists see the standards they argue for as steps towards health‐care that will support patient autonomy more pervasively as well as making health‐care better in other ways for patients. Sometimes, the highest possible value for a principle is clear from the beginning as, for example, for paediatric visiting. ³² Sometimes, the highest standard, or the logical end of a sequence of values, is obscure. Thus partners’ presence or support for women in childbirth shows a sequence over 50 years, from the first stage of labour only in the 1950s; for spontaneous deliveries in the 1960s; for instrumental deliveries in the 1980s; for elective (i.e. planned) caesarean sections under regional anaesthesia in the 1990s. ⁶⁶ , ⁶⁷ Each step has been attained through the persistent and sometimes anguished requests, complaints, and arguments of individual women and of patient groups. The final step, partners’ presence for elective caesarean section under general anaesthesia, has not yet been attained, although patient activists have tried to secure this as a national standard and a few anaesthetists offer it (M. Wang, personal communication). ⁶⁸ It would have been inconceivable 40 years ago.

Such progressive sequences are common in the course of emancipation. Women were admitted to universities before they were awarded degrees or then allowed to read medicine. The first steps in what became the black civil rights movement ‘[opened] the door to vistas which would have seemed too glaring before’. ⁴⁰

Unmasking new issues

New knowledge and a sense of direction enable patient activists to identify new issues in taken‐for‐granted policies and practices or in introductions of new technology or new ways of doing things. Sometimes open and familiar policies and practices cause unrecognized harm to patients or to their interests until new knowledge is applied to them. Sometimes, however, policies and practices are withheld from patients and the public or even deliberately hidden from them. ¹⁴ Such policies and practices are coercive if they lead patients to accept situations or make decisions that they might not have made had they known about the policy or practice. ¹⁴ Hidden or half‐hidden policies and practices are probably common in health‐care. Thus, criteria for referral or for eligibility for treatment may be given in protocols and guidelines that, though not secret, are not routinely shown to patients. ¹⁴ Excluding patients from decisions that could threaten their lives is acutely coercive, unless the patients affected are aware of their exclusion and the reasons for it. ¹⁴

Activists’ ability to unmask new issues leads them to be concerned about more and more policies and practices. NAWCH, starting from a single issue, went on to argue for freedom for parents to be with their child for the induction of and recovery from general anaesthesia, in treatment rooms and on ward rounds. ³² Once bitterly opposed, all are now accepted by most health‐care professionals and managers. Each standard for a contested issue can have its own trajectory, moving from a taken‐for‐granted value, through a disputed value, to a new taken‐for‐granted value; or abandoned; or superseded by other changes to health‐care. ⁴ , ⁶⁶ Low standards can stay unchanged for a long time, sustained by strong structural and cultural norms and constraints as well as by health‐care professionals’ and managers’ personal choices. But what has been socially constructed and supported can ultimately be changed socially.

‘Consciousness raising’ or showing people the implications of what they had taken for granted or been unaware of is fundamental to every emancipation movement. ³⁷

Schisms

Schisms, divisions that engender and reflect mutual hostility, ⁹ are common in emancipation movements. ³⁷ There are at least nine different sets of thought and belief in the women’s movement, and black civil rights movements have been torn by strife. ⁶⁹ , ⁷⁰ The patient movement is also prone to schism. Controversies over strategy and competition for influence or for resources recur. ⁷¹ Probably more fundamentally, conflicts can relate to the radical/non‐radical or conservative dimension that underlies the views and actions of patient groups and individuals. ⁷ This dimension has been little researched. But its influence is indicated by the readiness with which groups and individuals see each other as ‘too way out’ and ‘rocking the boat’ (i.e. too radical) or ‘too cosy’ with health‐care professionals and ‘too supine’ towards them (i.e. too conservative). Since radical and conservative positions may be held unconsciously, they can cause confusion inside and outside the movement.

Schisms contribute to the fragmentation and political weakness of the patient movement. Some patient groups collaborate in disease‐ or condition‐specific alliances or coalitions, like the Breast Cancer Network in Australia or the Long‐term Medical Conditions Alliance in the UK. Or diverse patient groups come together like the National Patient/Consumer Platform in the Netherlands. Such overarching organizations can enable patient groups to speak to government with a unified voice and can help make the patient side of health‐care prominent. But radical groups are unlikely to join such organizations or to be represented through them.

Allies

Just as some Britons in the 18^th and 19^th centuries sought to end the slave trade between this country and America and as some men espouse the cause of women’s interests, some health‐care professionals, civil servants, and managers share patient activists’ rejection of ‘low’ standards or oppressive values in health‐care. ³² , ⁵²

Sympathetic professionals have supported radical patient groups since the late 1950s and have valued professional‐activist working and liaison groups since the 1980s. ²¹ , ⁷² Professionals give technical advice, alert activists to hidden policies or practices, and give them insights into their fellow‐professionals’ reasons for resisting higher standards. In return, activists tell health‐care professionals things ‘that no‐one else will tell us’, give them new insights, alert them to emerging issues, and take action on issues too sensitive for professionals themselves to raise among their peers. ²⁷ , ⁷³

Activists also often welcome new ideas and standards put forward by radical professionals and may embark on long campaigns to get them accepted by less radical professionals. ⁶⁵

Conservative health‐care professionals tend to reject very radical activists. In working groups, activists may find themselves replaced by more tractable or ‘representative’ patients. ⁷⁴ , ⁷⁵ Similarly, conspicuously radical or ‘dissident’ health‐care professionals may be regarded as heroes by patient activists but as traitors by conservative members of their own profession. Thus the obstetrician, Wendy Savage, who in the 1980s supported women’s wish for minimal obstetric intervention in childbirth, was suspended from work by her health authority after being (wrongly) accused by her clinical colleagues of unsafe practice. ⁷⁶ Even in less dramatic cases, the personal cost to doctors of too radical an approach can be high. ⁷⁷

The dynamics of radicalism/conservatism within and across social groups’ boundaries are problematic; but gradually, emancipation movements usually gain ground in wider society. Health‐care professions, too, gradually become more radical. ⁷⁸

The acceptance of once‐radical principles and standards

Tracing the origins and spread of ideas is often difficult, sometimes impossible. In health‐care, dominant interest‐holders tend to silence other voices and appropriate their ideas and knowledge without attribution. ⁵⁰ , ⁵³ Words like patient autonomy, shared decision‐making, information, choice, safety, have become common in professional and managerial discourse, though what they mean there is often doubtful. Most non‐radical patient groups now emphasize the importance of autonomy, information, access and equity for patients. ² Again, exactly what they mean varies. Research by organizations independent of the patient movement shows that many patients want more information, choice, respect and access than they are given. ⁷⁹

At the detailed level of actual practice, practices and standards within each specialty can be checked against the practices or standards that activists have argued for or against. Some of those standards have improved so much that hardly anyone remembers that things were ever different. ⁴ In maternity care, for example, routine (i.e. compulsory, unless the patient successfully refuses them) showers, pubic shaves, enemas, and induction at 38 weeks have been abandoned; routine episiotomies reduced; and privacy and choice of pain relief improved. ⁸⁰ , ⁸¹ But AIMS judges that some other policies, practices and standards are worse than before, especially the routine use of obstetric interventions in low‐risk women, in spite of evidence that they do not benefit them and concerns about their known and unknown risks. ⁸² This view is confirmed by independent research that shows that midwives withhold information about possible choices in childbirth. ⁸³ Or they persuade women to choose a particular course of action by deliberately biasing information in its favour. ⁸⁴ So some policies and standards are as coercive as ever. ⁸²

Thus the picture is mixed. Nevertheless, most activists would probably agree that some progress has been made towards supporting patient autonomy through changed policies and practices and higher standards. Some power has been redistributed between patients and health‐care professionals in small but significant ways.

The gradual acceptance of ideas that were once too radical, too challenging to the status quo, too strongly opposed, to be immediately accepted, marks the success of emancipation movements. Without it, they would work without hope.

Conclusion

Each of the aspects of the patient movement, and in particular, its radical elements, described here could be attributed to other social factors or be given different interpretations. But together, they support the case for regarding it as an emancipation movement, albeit an immature one. Emancipation movements are not revolutions. Activists do not want health‐care professionals’ voices, skills and knowledge to be silenced or annihilated, any more than feminists want that for men or black activists for white people. ⁴ , ¹⁹ Rather, they aim to make the world better for everyone. ⁶⁰ ‘The primary role of a pressure group [i.e. a radical activist group] …is to bring about change which is vital to us all and the future of society…The pressure group is in the vanguard pushing towards the ideal’. ⁸⁵

Gaining recognition and acceptance of such an ideal is, however, hard for emancipation movements, for they readily arouse resistance. The dynamics of shifts from radical to conservative or non‐radical perceptions and views, so important for all emancipation movements, need further analysis and research. Only then will we understand socio‐political change fully enough to be able to bring the emancipatory benefits of radical ideas and standards more quickly to society.