Improving Psychiatric Care for Older People

Front matter

Barbara Robb’s Campaign 1965-1975

Claire Hilton

Mental Health in Historical Perspective

Foreword

My beloved grandmother died frail and confused in an overcrowded long-stay ward in a decrepit Victorian National Health Service hospital. There were so many beds in the ward there was barely room to stand between them. Nurses were seemingly indifferent towards their impossible task. In 1968 I was a bewildered and angry medical student with no idea how to voice my concerns at her evident distress and the lack of personal care. My parents too were troubled by the poor conditions, my grandmother’s unkempt appearance, the meals left untouched and out of her reach, the terrible ward stench. They never made a formal complaint, hardly knew where to begin, and in any case my grandmother died soon after admission. I have no doubt that this experience was one of the triggers for my choice of career in the psychiatry of old age. I did not know then that there was a battle in progress in the late 1960s and early 1970s between those who grasped how widespread was the poor care of older people in the National Health Service and were determined to improve it and those lined up against them, the forces of denial inside the service, who really believed there was not much wrong and in any case thought there was nothing to be done about any shortcomings given the resourcing and public ignorance. At the vanguard of the battlefront was one remarkable woman, Barbara Robb, who published Sans Everything: A Case to Answer in 1967, a searing indictment of the conditions for older people in long-stay hospital wards, initiated by her own observations of the care of one of her psychotherapy patients.

In this book, Claire Hilton has set out the campaign waged by this one inimitable woman, her organisation Aid for the Elderly in Government vii viii FOREWORD

Institutions (AEGIS) and the long struggles to convince the Ministry and its constituent Regional Hospital Boards that the truth was as she described it and to get them to accept that change was necessary. There could be no better qualified person to document this enlightening story than Claire Hilton. Claire is a dedicated, talented clinician, a psychiatrist working with older people, who has for some years immersed herself in the history of the development of the specialty of old age psychiatry in the twentieth century. She has illuminated the period by bringing together the characters and politics of the influential clinical professionals, policy makers, public health observers, press and government funders. In this new work, Claire has drawn on her profound understanding of the period and, through further scrupulously detailed research, has exposed a story that has wider implications, showing how policy makers can be easily misled by misinformation when the truth is unpalatable. But what she has also given us here is a cracking good read, a compelling story of one woman’s battle tragically cut short by Robb’s too early death in 1976.

The fact is that the scandals have continued in National Health Service hospitals, but more often today in the myriad of independent-sector nursing and care homes that now provide the majority of long-term care for those institutionalised at the end of their lives. Scandals are no longer swept under the carpet, rather under many small rugs, as psychiatrist Klaus Bergmann so memorably put it and quoted by Claire in her disturbing final analysis of what has changed for the better and how much still needs to be done. In spite of the cautionary finale, this is an uplifting story, and anyone who is interested in how to campaign on a social issue will learn some invaluable lessons from this splendid book.

Preface

In 1967, Sans Everything: A Case to Answer, was a best seller, a remarkable achievement for a nonfiction book about the unappealing subject of the poor care of older people in English psychiatric hospitals. The title and scandalous content remained familiar over the years, particularly to old age psychiatrists and others who aimed to provide high-quality mental health services for older people. None of them, however, could tell me anything about its author, Barbara Robb, although at the time she wrote, she was quite a celebrity, achieving both fame and notoriety. Cabinet Minister Richard Crossman wrote in his diary that she was a ‘terrible danger’ to the government, and a ‘bomb’ who had to be defused. With such an accolade, somewhere there had to be a story.

I first read Sans Everything in about 2006 after my husband bought it for me as a birthday present. The contents were gruesome, and like other readers, I focused on them, paying little attention to the chapters providing direction about how to improve care. Breathing a sigh of relief, I reassured myself that things aren’t nearly so bad today.

While undertaking related historical research, the names of several Sans Everything contributors came to light. Who were they? How did Barbara get them to write for her? Who were the people and places behind the pseudonyms? Who was ‘Miss Wills’ who Barbara rescued from ‘Cossett Hospital’? Who was Barbara? How did she get involved with the psychiatric hospitals, and what else did she do? These and other questions aroused my curiosity.

There are many reasons Barbara Robb was forgotten. She fought to improve provision for institutionalised older people and not for personal

X PREFACE acclaim. She was a thorn in the side of the National Health Service leadership who did not want to remember her, and both she and her husband, Brian, died prematurely. Half a century since publication of Sans Everything, it is time to reconsider the story behind it and its messages, much of which remains relevant to the care of unwell and frail older people today. Perhaps my sigh of relief was only partly justified.

ACKNOWLEDGEMENTS

Investigating Barbara Robb and Sans Everything was exhilarating, delving into archives and meeting many people who helped and offered much encouragement. Barbara’s family were enthusiastic. Her cousin William Charlton and his wife, Anne, welcomed me to their home in Northumberland, and her great-niece Anna Charlton showed me round Hesleyside Hall. Barbara’s niece Elizabeth Ellison-Anne lent me Barbara’s photograph album depicting the years 1937-1941, and she, with friends Cynthia Bressani, John Gilliver and Colin Bowes, showed me round the family home, Burghwallis Hall, and the adjoining church. Sister Deirdre McCormack showed me round St Peter’s Residence, and Constanza Isaza Martinez and Andrés Pantoja allowed me to wander round their home, the cottage where Barbara and Brian lived for many years. Charles and Robin Daniel, whose mother, Joyce, spoke out for more humane hospital provision in Cornwall, told me about her in the cottage where she lived. David Cochrane gave valuable advice at the beginning of the project, and Margaret Shepherd NDS, explained aspects of Roman Catholic practice. Other people told me about Barbara’s life and times and provided archives and photographs: they are acknowledged in the endnotes. Anna Towlson, archivist at London School of Economics, was always helpful with my visits to, and queries about, Barbara’s extensive archive. Many other archivists and librarians answered questions, retrieved documents and assisted with the project. Numerous historians offered constructive advice, including Tim Hurley, Michael Kandiah, Chris Knowles, Michael Passmore, Mary Salinsky, Sally Sheard, Kathleen Sherit, Mari Takayanagi and Pat Thane.

xi xii ACKNOWLEDGEMENTS

Tom Arie and David Jolley, my esteemed colleagues in old age psychiatry, read and commented on every chapter with great tact and patience. My husband, Michael, and sons, Samuel, Jacob and Benjamin, all guided me through computer hitches and accompanied me on visits to former psychiatric hospitals. Benjamin also gave advice on logical fallacies in the Sans Everything inquiries. Michael has been endlessly patient with the time spent on this project and has enjoyed our visits to people, places and archives from Cornwall to Northumberland.

I am indebted to the Wellcome Trust for funding this study during an eight-month sabbatical from clinical work as an old age psychiatrist. I am also grateful to Central and North West London NHS Foundation Trust for allowing me to take time off and to Lynis Lewis and North Central London Research Network for help with administrative matters.

My link to Palgrave Macmillan began with a chance meeting with historian John Stewart at a conference at the Wellcome Trust. He introduced me to Matthew Smith and Catharine Coleborne, academic editors of the series Mental Health in Historical Perspective. They were endlessly enthusiastic and guided me through many stages towards publication. I’m also grateful to Vicky Long who reviewed the manuscript and whose comments helped shape the book, and to Palgrave’s editors, Molly Beck, Oliver Dyer and Sundar Ananthapadmanabhan, who were a pleasure to work with.

This list of helpers, encouragers and friends is not exhaustive, and I apologise to anyone missed out who thinks they should have been included. To them too I am most grateful.

Contents

1 Introduction: A Strange Eventful History l

2 Psychiatric Hospitals and Older People: Status Quo or Making Changes? 19

4 Establishing AEGIS and Writing Sans Everything: ‘The Case’ and ‘Some Answers’ 97

Chapter 1

Last scene of all, That ends this strange eventful history Is second childishness and mere oblivion; Sans teeth, sans eyes, sans taste, sans everything.

William Shakespeare, As You Like It (Act II, scene vii)

On 21 January 1965 Barbara Robb visited an elderly acquaintance, Amy Gibbs, an in-patient on a long-stay back ward at Friern psychiatric hospital, North London. There, she stepped into the murky, longstanding and hardly shifting territory of older people’s institutional care. Shocked by what she saw, such as harshness from nurses and the patients’ uniform haircuts, institutional clothing and lack of personal possessions and occupation, Barbara began a diary of her visits because ‘I felt that I would never have another really easy moment unless I did everything I could to try to right this situation’ (Allen 1967). Within months she established AEGIS, Aid for the Elderly in Government Institutions, which became one of the country’s most determined pressure groups (Robinson 1970). Barbara Robb resembled earlier well-known women campaigners, such as Elizabeth Fry (1780-1845) the prison reformer, and Florence Nightingale (1820-1910) who professionalised nursing. All three women were appalled by the inhumanity they witnessed in institutions and set their minds to eliminating it. They were upper-class women

© The Author(s) 2017 l C. Hilton, Improving Psychiatric Care for Older People, Mental Health in Historical Perspective, DOI 10.1007/978-3-319-54813-5_1 of independent means with strong religious inspiration for their work. They all dedicated years to achieving improvements.

This study primarily concerns the back wards of National Health Service (NHS) psychiatric hospitals in England. These wards mainly housed people over sixty-five years of age alongside some younger people with chronic mental illness. Psychiatric hospitals were only one part of the health and welfare services used by older people, but care provided in them was particularly problematic. Patients, their families and hospital staff, all had low expectations of improvement or discharge. Staff showed little interest in older people who often received no clear psychiatric diagnosis, treatment or rehabilitation, unlike younger people in the same hospital (Martin 1962). Many staff could not ‘formulate a “psychogeriatric” problem in any other terms but as the need to get it instantly off their hands’ (Arie 1973, p. 541). The patients did not benefit from the expertise of geriatricians, the doctors who specialised in older people’s physical healthcare. Geriatricians aimed to diagnose illness accurately and provide treatment to improve health, well-being and function, but they worked mainly in general hospitals and hardly entered psychiatric hospitals (Denham 2004, p. 357). In hospitals without geriatricians, older people were particularly at risk of poor-quality care associated with negative, ageist stereotypes, which assumed they were all afflicted with irreversible chronic illness that would result in inevitable and hopeless decline.

AEGIS’s book, Sans Everything: A Case to Answer (Robb 1967), described scandalous inhumane and inadequate care in long-stay wards. The wards were overcrowded and understaffed. Undignified and unkind practices included teasing, hitting and swearing at patients. In many hospitals, there was no privacy for personal care, and bedtime could be as early as 5 p.M. Sans Everything revealed deficits and proposed remedies, including specialist psychiatric services to treat and rehabilitate mentally unwell older people to prevent admission and enable discharge, and housing schemes on surplus land around psychiatric hospitals to generate income to help pay for the services. It also recommended a hospital ombudsman, an inspectorate to monitor and ensure high standards, and better NHS complaints procedures.

Throughout AEGIS’s campaign, NHS staff, patients and their relatives, the media and the wider public responded in a diversity of ways. These ranged from acknowledgement of the allegations of bad practice, such as by the press, to rejection, particularly in higher tiers of NHS administration. AEGIS struggled to convince the Ministry of Health and the Regional Hospital Boards (RHBs) about the happenings in the hospitals that they oversaw.

This study argues that Barbara Robb, AEGIS and Sans Everything had a far greater role than previously recognised in influencing improvements in services. Sans Everything was controversial, and the Ministry of Health discredited it, which obscured its centrality. However, Richard Crossman, Secretary of State for Social Services (1968-1970), and Brian Abel-Smith, Professor of Social Administration at the London School of Economics (LSE) who had a long-term interest in the NHS, regarded AEGIS as a powerful influence on NHS policy and development (Crossman 1977, p. 727; Abel-Smith 1990, p. 259). Alternative views include those in Robin Means and Randall Smith’s (1985) study about welfare services for older people, which emphasised the government’s role in making improvements, rather than pressure from AEGIS to ensure that it acted. Charles Webster (1998, p. 119), official historian of the NHS, regarded the Ely Hospital Inquiry as pivotal for stimulating change, rather than the events that preceded and followed it, which Barbara steered, often behind the scenes.

The primary aim of this book is to tell the story of AEGIS, Sans Everything and the campaign to improve older people’s care. Barbara intended to do this herself, but time did not permit it.’ Little is known of the people and events behind the allegations described in Sans Everything, who made them and what inspired them to do so. Published sources reveal merely summaries of the official inquiries into the allegations, the shortest being one and a half pages (Ministry of Health (MoH) 1968, pp. 82-83). These reports only glimpse at the inquiry processes, their findings and recommendations stemming from them. Barbara’s tenacity to the cause was remarkable: every defeat or success increased her resolve to achieve her aims, yet little is known of her background and personality, and the support mechanisms that enabled her to do so. She organised AEGIS from her cottage home and was constantly at the helm. AEGIS’s story is thus inextricably interwoven with her life. When Barbara died in 1976 at age sixty-four, AEGIS died with her. However, by then the government had initiated many of the Sans Everything proposals, and other campaigners, such as the Group for the Psychiatry of Old Age at the Royal College of Psychiatrists, adopted some of AEGIS’s longer-term objectives (Hilton 2016b).

This book also has a secondary aim: to explore whether issues raised by AEGIS have lessons for today, because many of its themes ring true fifty years on. It aims to give insights into the reasons for repeated deficits in provision and inform current debate concerning older people’s health and social care. Recent scandals have included Care and Compassion? (Health

Service Ombudsman 2011), the Mid Staffordshire Inquiry (2013), Orchid View Serious Case Review (West Sussex 2014), and the BBC Panorama documentary Behind Closed Doors (2014). Analysis of: how, why and by whom abuse and neglect took place in the 1960s; the recommendations made to remedy the situations; and what was (and was not) achieved, may contribute to understanding the mechanisms behind abuse in institutions and hence the steps that can be taken to prevent recurrences. Historical studies of the care of older people are particularly important as inhumanities towards them escape from public memory more rapidly than cruelties towards children. Margaret Panting, a seventy-eight-year-old woman who suffered repeated physical injury and died at the hands of relatives in 2001 is virtually unknown (Ash 2011, p. 100). In contrast, children, such as Victoria Climbié, killed by her guardians in 2000, and ‘Baby Peter’ who died at the hands of relatives in 2007, are embedded in public consciousness.

A study of AEGIS lies at the interface of the history of NHS policy and practice, mental health, mental hospitals, old age and gender. It reveals much about the workings of higher levels of NHS administration, such as how it managed complaints and deficits in services and its relationship with the public. It fills a gap in twentieth-century women’s history, including from the slant of their position as older patients. Adequate health and welfare support in old age is particularly relevant to women because on average they live longer than men. They often live alone while suffering from frailty and age-related chronic degenerative illnesses. They may struggle to cope and require institutional care towards the end of their lives. In the 1960s, older working-class women often had particularly meagre financial resources so depended on state welfare provision and occupied a disproportionate number of psychiatric hospital beds. Other women discussed in the study besides Barbara include her supporters and author-witnesses; journalists who publicised her concerns; hospital staff; and middle-class women undertaking voluntary roles on RHBs, on Hospital Management Committees (HMCs) and with charities.

To understand the context and background of AEGIS’s campaign, and to highlight this study’s contemporary relevance, several further issues are discussed in this introduction: early- and mid-twentieth-century psychiatric hospital scandals; the handful of studies concerned directly with AEGIS; pressure groups; and ageism. The larger background subject of how psychiatric hospital provision developed for older people until the mid-1960s is explained in the next chapter.

SCANDALS OF PSYCHIATRIC HOSPITAL CARE 5

SCANDALS OF PSYCHIATRIC HOSPITAL CARE

Sans Everything was not the first or the last time poor care in psychiatric hospitals was reported and investigated. A review of existing historical studies about these episodes gives some indication of the hurdles which AEGIS might face in its endeavours. Montagu Lomax, a doctor who worked at Prestwich Asylum for a short time, wrote The Experiences of an Asylum Doctor (1921) about inadequate clinical practice there. It became a cause célébre. Colleagues were hostile and accused him of sensationalism and exaggeration. The asylum regulatory authority, the Board of Control, criticised ‘the methods which Dr Lomax has seen fit to adopt in preparation and publishing his book... the charges made were sheer nonsense and a gross calumny’ (Harding 1990, p. 180). A committee of inquiry was unreceptive, and an anonymous contributor to an academic psychiatric journal (Anon. 1923, p. 91) praised it for a ‘masterly and logical’ rejection of Lomax’s complaints. Despite the rejection, the committee made recommendations for improvements based on Lomax’s report, as did the Royal Commission on Lunacy (1924-1926), whose conclusions underpinned the Mental Treatment Act 1930 (Harding 1990, p. 181). Harding provided insights into the way a whistle-blower can be victimised and officialdom can viciously reject constructive criticism but then use it as a basis for proposing improvements.

Relatively little historiography is available about AEGIS. Four researchers from the academic discipline of social administration and policy explored its work. Kathleen Jones and AJ Fowles (1984) included AEGIS as part of their study on the literature of long-term care and custody in the 1960s. John Martin (1984) analysed hospital inquiries from 1968 until 1984, and David Cochrane (1990) based his doctoral thesis on a case study of AEGIS and the process of health policy change in England. Some other writers have touched on Sans Everything but have tended to follow the Ministry of Health’s interpretation, that Sans Everything was irresponsible scare mongering and an inappropriate smear on all psychiatric hospital nurses.” Although even a cursory glance at Sans Everything (p. xiv) shows this is incorrect, the perception has crept into secondary sources. Michael Arton (1998, p. 288), for example, stated that AEGIS gave ‘the impression to the general public that mental nurses were a group of uncaring sadists’, but he did not cite confirmatory evidence for his statement.

Jones and Fowles’ analysis was based on a handful of published works, leading them to place little credibility on the accounts of neglect and abuse in Sans Everything. They accepted the official inquiry reports that most of the allegations were false. They concluded, in an uncomplimentary way, that: “The whole affair was a very skilful exercise in public relations; and despite the flamboyance, the distortions and the inaccuracies, it worked’ (p. 108). Archival sources used in the present study challenge their criticisms; the ‘affair’ label would be more apt for the Ministry’s handling of the situation than for AEGIS’s allegations.

Martin (1984) analysed the first cluster of inquiries into psychiatric hospitals, including Sans Everything (MoH 1968), Ely (Department of Health and Social Security (DHSS) 1969), Farleigh (DHSS 1971), Whittingham (DHSS 1972), and South Ockendon (DHSS 1974). He described them as being of the ‘old order’, because ‘their circumstances derived from past inadequacies of provision, and from lack of new thinking’.* Martin concurred with the published inquiry reports into Sans Everything and with the Ministry’s view, that almost all allegations were disproved, thus discrediting AEGIS. However, he did not discuss the incongruity of that in the context of the rapid succession of investigations into similar allegations in other hospitals that were shown to be justified.

Martin discussed patterns of malpractice. Usually there was a chain of events and a broad context of failures of care rather than a single ‘bad apple’. Staff often knew what was going on but did nothing about it, partly because of the power of the work group and of staff loyalty to it (Martin 1984, p. 243). Good clinical practice was undermined when secondary aims (making things easier for the staff) were substituted for primary ones of person-centred care. This resulted in gradual deterioration of standards, and ‘the ultimate exposure made by a newcomer who is not conditioned to standards which have become familiar to the long-term stafP (p. 244). Martin also noted that hospital hierarchies, especially in the nursing profession, did not encourage questioning by the all-important ward staff undertaking face-to-face work with patients, and that creativity, individuality and clinical responsibility produced better care. Failure of staff to take on as much personal responsibility as possible was ‘likely to result in the quality of care sinking to that level which is most convenient for the staff to provide and which satisfies minimum standards’ (p. 243). This conclusion was unnervingly close to a comment made by Andy Burnham, Secretary of State for Health, 2009-2010, to the Mid Staffordshire Inquiry (2013, p. 1378): ‘the NHS is not good at giving its front-line staff a sense of empowerment. People with good ideas do not feel that they can easily

SCANDALS OF PSYCHIATRIC HOSPITAL CARE 7 put them into action.’ Martin’s comment about the importance of the newcomer in detecting poor standards was apparent in the role of Julie Bailey, who visited her mother in hospital and whose concerns culminated in the Mid Staffordshire Inquiry (Cure the NHS 2016).

Martin also argued that professionally isolated staff, such as in the rural psychiatric hospitals, could perceive outside influences as threatening and likely to show up their deficiencies, rather than being revitalising. On wards with inadequate staff levels and resources, complaints could be resented strongly. In such circumstances, staff stuck together, showing up ‘the darker side of group loyalty’, suppressing criticism and victimising the critic. Martin also noted that ‘To say one is doing one’s best under the circumstances is to recognise that one is mot doing the best work. It is a defence with built-in vulnerability. It almost invites attack and it generates a guilty sensitivity to criticism’ (p. 245). ‘Doing one’s best under the circumstances’ is also heard in the NHS today, to justify inadequate clinical services associated with underresourcing.*

Cochrane’s (1990) analysis of the important role of AEGIS in NHS policy development challenged the earlier interpretations, which were largely based on published texts. He demonstrated how it initiated the succession of scandals in psychiatric hospitals (c.1968-1974) and contributed to health service policy, including raising the priority of mental illness and mental handicap services and influencing the establishment of a hospitals’ inspectorate, ombudsman and NHS complaints procedures. Cochrane documented Barbara’s political career as a social reformer, but some of his conclusions, such as extrapolating her influence into the late 1980s, are hard to justify historically in view of the complex processes of social and health policy change.

Cochrane was fortunate to have Abel-Smith to supervise his thesis. He also had the advantage of being able to undertake oral history interviews with people who knew Barbara, collaborated with her or opposed her. They included Geoffrey Howe, WJA ‘Bill’ Kirkpatrick, Kenneth Robinson, CH Rolph (Bill Hewitt), David Roxan and Lord Strabolgi, all of whom have since died. Cochrane did not give reasons why Sir Arnold France, Permanent Secretary and Robinson’s ‘right hand man’ at the Ministry of Health (1964-1968) (Green 2004) declined to be interviewed, and other DHSS officials and ‘senior health authority officers’ asked not to be named (Cochrane 1990, p. 389).

The present study differs from Cochrane’s in several ways. First, it is outside the constraints of a social science discipline and aims to explore what happened historically rather than relate events to a theoretical model. Second, it is more people focussed. Who was Amy Gibbs, ‘Miss Wills’ in Sans Everything? Who were the pseudonymous contributors to the book? How did Barbara cope with the hostility and discrediting of her work? Third, now that the closure period for official archives has expired, more sources are available so it is possible to explore the Sans Everything allegations and inquiries in greater depth. This supports the timeliness of a further study of AEGIS’s work.

SOCIAL JUSTICE, PRESSURE GROUPS AND THE EMERGENCE or AEGIS

Societal changes in the 1960s included a focus on personal autonomy and individuality with less submissiveness to authority. This affected lifestyles, expectations about standards of living and demands for humane and safe public services and environments. Despite greater affluence for many people, disturbing large-scale poverty, especially affecting children, large families and older people, was ‘rediscovered’ by researchers at LSE (Thane 2011). LSE academics particularly conspicuous in this work included Abel-Smith and Peter Townsend. Abel-Smith supported and gave credence to several campaigns, such as the Child Poverty Action Group (CPAG) (Townsend 2004; Sheard 2014, pp. 224, 256). Townsend (1962, 1963) published in-depth sociological studies, including about the needs of older people. He wrote about their poverty and the disadvantageous health inequalities that accompanied it. He cited a 1950s estimate that up to 75 percent of retired people had incomes low enough to qualify for meanstested National Assistance (Townsend 1963, p. 186). Poverty became an important social justice issue and a matter for ‘pressure groups’.

Pressure groups, and lobbying and petitioning governments and leaders, were well-established mechanisms for conveying public unease and encouraging social change. For example, 150 years before Barbara formed AEGIS, Elizabeth Fry established a small campaign organisation, Association for the Improvement of the Females at Newgate, after her first visit to the London prison (Howard League 2016). In the 1960s many new organisations emerged, expressing concerns and aiming to generate action. They campaigned on issues such as the environment, nuclear disarmament, abortion, homosexual and women’s rights and other ‘conscience’ issues. The broadly focussed Consumers’ Association,

SOCIAL JUSTICE, PRESSURE GROUPS AND THE EMERGENCE OF AEGIS 9 founded in 1957, became a powerful representative of this general trend (O’Hara 2013). Crossman was wary of well-run pressure groups, like AEGIS and CPAG: ‘these small splinter groups, can be extremely powerful if they provide the press with hot poisonous news. They can really damage our image.’

Investigative journalism and a less deferential media emerged in the 1960s, with some newspapers ‘geared to shaking and rattling’, seeking justice and making ‘people sit up straight’.° One journalist, Andrew Roth, contrasted the changes in his profession from the 1950s to the 1960s:

Pressmen, political correspondents like myself, for example, would know a great deal more than they would report because they didn’t think it was ‘nice’ to report about certain things. ... Now that’s changed very considerably, thanks to a number of institutions like Private Eye and the breakout of the BBC in That was the week that was (Davies 1985, pp. 17-18).

This gave opportunities for professionalised, media-aware campaigning organisations to publicise their concerns to help achieve solutions. The BBC, for example, showed Cathy Come Home, Ken Loach’s film that told the bleak tale of Cathy, who lost her home, husband and eventually her child through the inflexibility of the British welfare system. The film was central to founding the housing charity Shelter (Shelter 2016).

Before the creation of the NHS in 1948, financing of hospitals and long-stay care was largely addressed through philanthropic and Poor Law mechanisms. The donor—beneficiary relationship inhibited protest about substandard practice or facilities, a deeply engrained pattern that, to some extent, recurs or has continued. In the 1960s, patients generally expressed their appreciation and uncritical acceptance of the care they received (Cartwright 1964, pp. 8, 203). Older people rarely complained then or now (Parliamentary and Health Service Ombudsman (PHSO) 2015). The authorities interpreted lack of complaints to mean that provision was satisfactory.’ They did not take into account that many patients and their relatives feared the consequences of complaining or did not know how to complain (also PHSO 2015), and there were no guidelines informing them how to do so.

Although patients had individual contact with doctors, the paternalistic doctor-patient relationship in the 1960s discouraged patients from asking questions about their own health or commenting on aspects of the service they received. Societal changes away from conformity towards greater personal autonomy were associated with less acceptance of medical paternalism and a shift away from the assumption that the doctor and the NHS always knew best. Disquiet about experiences of NHS patients received public airing, such as in Gerda Cohen’s What’s Wrong with Hospitals? (1964), based on her own frustrating and depersonalising experience of hospital care. She wrote that patients of all ages had ‘no rights, no dignity, no status’, were treated ‘like chipped flower-pots in for repair? and were kept in ignorance ‘merely because it’s no one’s job in a hospital to tell the patient what is happening’ (pp. 7, 9).