1 Department of Health and Social Security (DHSS), Patients first: consultative paper on the structure and management of the National Health Service in England and Wales (London, 1979); The National Health Service and Community Care Act (1990); C. Webster, The National Health Service: a political history (Oxford, 2002), pp. 140–207.
2 M. Thatcher, The Downing Street years (New York, NY, 1993), p. 607.
3 NHS Management Enquiry, 6 Oct. 1983 (Griffiths Report), reproduced in S. Harrison, National Health Service management in the 1980s: policymaking on the hoof? (Avebury, 1994), p. 175.
4 Her Majesty's Stationary Office (HMSO), Working for patients (London, 1989), Foreword by Margaret Thatcher.
5 R. Klein, The new politics of the NHS: from creation to reinvention (Oxford, 2006), pp. 253–5.
6 Shapely P., ‘Tenants arise! Consumerism, tenants and the challenge to council authority in Manchester, 1968–1992’, Social History, 31, (2006), pp. 60–78; A. Young, The politics of regulation: privatized utilities in Britain (Basingstoke, 2001).
7 On the broader relationship between citizenship and consumption, see F. Trentmann and K. Soper, eds., Citizenship and consumption (Basingtoke, 2008). On the continued making of the citizen-consumer under New Labour, see J. Clarke, J. Newman, N. Smith, E. Vidler, and L. Westmarland, Creating citizen-consumers: changing publics and changing public services (London, 2007).
8 J. Le Grand, Motivation, agency and public policy: of knights & knaves, pawns & queens (Oxford, 2003).
9 Foucault's most influential works in this context are M. Foucault, The history of sexuality, i:An introduction (Harmondsworth, 1990), and Discipline and punish: the birth of the prison (New York, NY, 1979). See also N. Rose, Governing the soul: the shaping of the private self (London, 1999), and N. Rose, Inventing our selves: psychology, power and personhood (Cambridge, 1996).
10 Hacking I., ‘Making up people’, London Review of Books, 28 (17 Aug. 2006), pp. 23–6.
11 Armstrong D., ‘The patient's view’, Social Science and Medicine, 18, (1984), pp. 737–44, at p. 739.
13 Porter R., ‘The patient's view: doing medical history from below’, Theory and Society, 14, (1985), pp. 175–98.
14 A. Borsay and P. Shapely, eds., ‘Introduction’ to Medicine, charity and mutual aid: the consumption of health and welfare in Britain c. 1550–1950 (Aldershot, 2007), p. 1.
15 Condrau F., ‘The patient's view meets the clinical gaze’, Social History of Medicine, 20, (2007), pp. 525–40.
16 F. Trentmann, ‘The modern genealogy of the consumer: meanings, identities and political synapses’, in F. Trentmann and J. Brewer, eds., Consuming cultures, global perspectives: historical trajectories, transnational exchanges (Oxford, 2006), pp. 19–69, at p. 50.
17 M. Hilton and M. Daunton, ‘Material politics: an introduction’, in Daunton and Hilton, eds., The politics of consumption: material culture and citizenship in Europe and America (Oxford, 2001), pp. 1–32, at p. 4.
18 Trentmann, ‘The modern genealogy’, pp. 43–8.
19 M. Hilton, Consumerism in twentieth-century Britain: the search for a historical movement (Cambridge, 2003).
20 See, for example, D. S. Lees, Health through choice: an economic study of the British National Health Service (London, 1961); Political and Economic Planning, Family needs and the social services (London, 1961); Research Institute for Consumer Affairs, General practice a consumer commentary (London, 1963); A. Cartwright, Human relations and hospital care (London, 1964). A similar pattern of movement of the patient-consumer from health economists to consumer groups has been observed in the USA, see N. Tomes, ‘Patients or health-care consumers? Why the history of contested terms matters’, in R. A. Stephens, C. E. Rosenberg, and L. R. Burns, eds., History and health policy in the United States: putting the past back in (New Brunswick, NJ, 2006), pp. 83–110.
21 R. Williams, Keywords: a vocabulary of culture and society (London, 1976; 1988 edn), p. 79; Stacey M., ‘The health service consumer: a sociological misconception’, Sociological Review Monograph, 22, (1978), pp. 194–200.
22 S. Fielding, The Labour governments, 1964–1970, i:Labour and cultural change (Manchester, 2003), pp. 18–19, 191–208.
23 H. Curtis and M. Sanderson, eds., The unsung sixties: memoirs of social innovation (London, 2004); N. Crowson, M. Hilton, and J. McKay, eds., NGOs in contemporary Britain: non-state actors in society and politics since 1945 (Basingstoke, 2009); A. Lent, British social movements since 1945: sex, colour, peace and power (Basingstoke, 2001).
24 A few studies of particular disease specific groups exist, see, for example, Crossley N., ‘Transforming the mental health field: the early history of the National Association for Mental Health’, Sociology of Health and Illness, 20, (1998), pp. 458–88, and M. Nicholson and G. Lowis W., ‘The early history of the Multiple Sclerosis Society of Great Britain and Northern Ireland: a socio-historical study of lay/practitioner interaction in the context of a medical charity’, Medical History, 46, (2002), pp. 141–74, but further work is needed on the interaction between groups such as these and notions of health consumerism.
25 G. E. Appelbe, ‘From arsenic to thalidomide: a brief history of medicine safety’, pp. 243–60, in S. Anderson, ed., Making medicines: a brief history of pharmacy and pharmaceuticals (London, 2005), pp. 253–7; Webster, The National Health Service, pp. 80, 119–21.
26 See, for example, I. Illich, Limits to medicine – medical nemesis: the expropriation of health (London, 1976); T. Szasz, The myth of madness: foundations of a theory of personal conduct (New York, NY, 1974); T. McKeown, The role of medicine: dream, mirage or nemesis? (Oxford, 1979); E. Goffman, Asylums: essays on the social situation of mental patients (London, 1961).
27 For example Consumers' Association (CA), The Which? guide to your rights (London, 1980); CA/Patients Association (PA), A patient's guide to the National Health Service (London, 1983); National Consumer Council (NCC), Patients' rights: a guide for NHS patients and doctors (London, 1983); R. Gann and S. Knight, College of Health consumers' guide to health information (London, 1986).
28 CA, Avoiding heart trouble (London, 1980); CA, Understanding stress (London, 1988); CA, Understanding allergies (London, 1986); CA, Understanding cancer (London, 1986); CA, Understanding back trouble (London, 1991).
29 ‘Baldness in men: is there an answer?’ Which?, Nov. 1983; ‘Drink’, Which?, Oct. 1984, pp. 445–9.
30 Self Health, Nov. 1983; Self Health, Jan. 1984; Self Health, Mar. 1985.
31 Rigge M., ‘“Healthline”: a new service from the College of Health’, Health Libraries Review, 3, (1986), pp. 1–10.
32 Private papers of Michael Young, Churchill College Cambridge (YUNG) YUNG/6/10/7, A. Williams, ‘Very preliminary paper on the College of Health’, 23 May 1991. See also V. Berridge, AIDS in the UK: The making of policy, 1981–1994 (Oxford, 1996), pp. 89, 124.
33 YUNG/6/27/2, M. Young, Healthline and Health Information Trust Report, 1987.
34 YUNG/6/10/10, CoH (CoH) First Annual Report, 1984.
35 CA/PA, A patient's guide, p. 8.
36 NCC, Patients' rights, p. 3.
37 Which?, Mar. 1983; Which?, June 1984; Which?, Jan. 1987; Which?, Jan. 1983; Which?, Feb. 1986; Which?, Sept. 1987.
38 Self Health, 16 (Sept. 1987); interview between author and M. Rigge, 10 Mar. 2010.
39 Hilton M., ‘The fable of the sheep, or private virtues, public vices: the consumer revolution of the twentieth century’, Past and Present, 176, (2002), pp. 222–56, at p. 238.
40 Association of Community Health Councils for England and Wales (ACHCEW), The golden age of patient and public involvement: celebrating the work of the Community Health Councils, CD Rom, vol. 2, ACHCEW, The consumers view: a review of CHCs surveys on outpatient departments (London, 1984).
41 Central Birmingham CHC, Annual report, 1 June 1979–31 May 1980.
42 ACHCEW CD Rom, Vol. 2, Community Health News, Feb./Mar. 1985, p. 10.
43 ACHCEW CD Rom, Vol. 2, Community Health News, Nov. 1984, p. 13.
44 Harrison, National Health Service management in the 1980s; M. Gorsky, ed., The Griffiths NHS management enquiry: its origins, nature and impact (London, 2010).
45 Batchelor C., Owens D. J., Read M., and Bloor M., ‘Patient satisfaction surveys: methodology, management and consumer evaluation’, International Journal of Health Care and Quality Assistance, 7, (1994), pp. 22–30.
46 YUNG/6/10/11, CoH Information Leaflet, n.d [1990s?]; Rigge M., ‘Involving patients in clinical audit’, Quality in Healthcare, 3 (1994), supplement, pp. 2–5.
47 C. Medawar/Social Audit, The wrong kind of medicine (London, 1984).
48 YUNG/6/10/7, ‘The patient speaks: good practice in consumer relations in the health service’, by M. Young and the staff of the CoH, Mar. 1991.
49 Interview between author and Rigge.
51 YUNG/6/10/10, CoH First Annual Report, 1984.
52 YUNG/6/10/12, CoH, College of Health guide to hospital waiting lists, 1987, p. 3.
53 YUNG/6/10/12, CoH, Guide to hospital waiting lists, 1989, pp. 1–2.
54 A. Petersen and D. Lupton, The new public health: health and self in the age of risk (London, 1996); Shaw I. and Aldridge A., ‘Consumerism, health and social order’, Social Policy and Society, 2, (2003), pp. 35–43.
55 Contemporary Medical Archive Centre, Wellcome Library (CMAC), Papers of the Medical Women's Foundation, SA/MWF/H.23, Press Release from the PA: ‘Patients association attacks Minister of Health as misleading on the use of patients as teaching material’, 5 Apr. 1968; Anon. , ‘Now a voice for patients’, Times, 17 June 1963, p. 15; Hodgson H., ‘Medical ethics and controlled trials’, letter to the British Medical Journal, 18 May 1963, pp. 1339–40.
56 NCC, Patients' rights.
57 CA/PA, A patient's guide.
59 NCC, Patients' rights, p. 3.
61 CA, The Which? guide to your rights, p. 9.
62 A particularly influential assertion of the importance of patient autonomy and informed consent during the 1980s, and in the decades since, was T. Beauchamp and J. Childress, Principles of biomedical ethics, first published in 1979, and now into its sixth edition.
63 Hospital Complaints Procedure Act (1985).
64 Data Protection Act (1984); Access to Health Records Act (1990).
65 The National Archives, HO 261/265, the Data Protection Committee: Medical Records. Note by the Patients Association, 19 Dec. 1976; Council of Europe, Convention for the protection of individuals with regard to automatic processing of personal data, European Treaty Series no. 108 (Strasbourg, 1981).
66 CMAC, Papers of the Patients Association (SA/PAT) SA/PAT/K/2/1/11, ‘Data decision’, Hospital Doctor, 13 Feb. 1986.
67 CMAC, SA/PAT/K/2/1/11, Data Protection Act: Subject Access to Personal Health Information. Response of the NCC, Feb. 1986.
68 DHSS, Data Protection Act 1984: modified access to personal health information (London, 1987).
69 CMAC, SA/PAT/K/2/1/11, Data Protection Act: subject access to personal health information – a consultation paper by the DHSS, 1985.
70 T. Pogge, World poverty and human rights (Cambridge, 2008).
71 T. H. Marshall, ‘Citizenship and social class’, in T. H. Marshall and T. Bottomore, Citizenship and social class (London, 1992), p. 8.
72 9 & 10 George VI, c. 11, ‘The National Health Service Act’ (1946).
73 Hilton M., ‘The duties of citizens, the rights of consumers’, Consumer Policy Review, 15, (2005), pp. 6–12.
74 D. Porter, Health civilisation and the state: a history of public health from ancient to modern times (London, 1999), p. 57; Mazower M., ‘The strange triumph of human rights, 1933–1950’, Historical Journal, 47, (2004), pp. 379–98.
75 United Nations, Universal declaration of human rights, Article 25 (1948), World Health Organization, Constitution of the World Health Organization (New York, NY, 1946); United Nations, International covenant on economic, social and cultural rights (New York, NY, 1966/1976).
76 Declaration of Alma Ata: international conference on primary health care (Alma Ata, 1978).
77 Birn A., ‘Special section – health and human rights: historical perspectives and political challenges’, Journal of Public Health Policy, 29, (2008), pp. 32–41; Cmiel K., ‘The recent history of human rights’, American Historical Review, 109 (Feb. 2004), pp. 117–35; Marks S. P., ‘The evolving field of health and human rights: issues and methods’, Journal of Law, Medicine and Ethics, 30, (2002), pp. 732–54; Tarantola D., ‘A perspective on the history of health and human rights: from the Cold War to the Gold War’, Journal of Public Health Policy, 29, (2008), pp. 42–53.
78 The language of human rights was important to some disease specific groups, such as those concerned with HIV/AIDS, especially at the international level. See Berridge, AIDS in the UK, pp. 162–3.
79 O. O'Neill, Autonomy and trust in bioethics (Cambridge, 2002).
80 YUNG/6/10/4, Proposal to establish a Health Action Area for Pimlico: application for funds and support, 1 June 1987.
81 Department of Health, Patient's charter (London, 1991). The significance of the Patient's charter will be discussed in greater detail below.
82 Hilton, Consumerism in twentieth-century Britain.
83 NCC, Annual report and accounts, 1981/1982 (London, 1982), p. 2.
84 YUNG/6/10/3, ‘Information and choice for patients’, talk at King's College Hospital Medical School, 9 Sept. 1986 [by Marianne Rigge].
85 NCC, Annual report and accounts, 1983/1984 (London, 1984), p. 8.
86 NCC, Annual report and accounts, 1987 (London, 1987), p. 8.
87 Lord Young of Dartington, ‘The College of Health's view’, pp. 27–46, in D. Green et al., The NHS reforms: whatever happened to consumer choice? (London, 1989), p. 34.
88 YUNG/6/10/10, Gann and Knight, College of Health consumers' guide to health information, p. 3.
89 Aylesbury Vale Community Health Council (CHC), for example, surveyed hospital inpatients and found that patients wanted more choice of food. See ACHCEW, Community Health News, 47 (Oct. 1989), p. 14.
90 Central Birmingham CHC, Report, 1 June 1979–31 May 1980.
91 Anon. , ‘Doctor, doctor: you and your GP’, Which?, 32 (Oct. 1989), pp. 481–5.
92 NCC, The consumer and the state: getting value for public money (London, 1979), p. 15.
95 Central Birmingham CHC, Annual report, 1 June 1979–31 May 1980.
96 J. Neuberger, ‘A consumer's view’, in Green et al., The NHS reforms, pp. 15–25, at p. 19.
97 Young, ‘The College of Health's view’, in Green et al., The NHS reforms, p. 39.
98 ACHCEW CD Rom, Vol. 2, Community Health News, supplement on working for patients, issue 48, Nov. 1989, p. 4.
99 Anon., ‘Doctor, doctor: you and your GP’, pp. 481–5.
100 Young, ‘The College of Health's view’, p. 28.
101 Neuberger, ‘A consumer's view’, p. 24.
102 Young, ‘The College of Health's view’, pp. 42–5.
103 Department of Health, Patient's charter.
104 C. Hogg, Patients, power and politics: from patients to citizens (London, 1999), p. 43.
105 YUNG/6/10/7, Young's comments on the patient's charter to D. Brindle and M. Dean at the Guardian, n.d. .
106 ACHCEW CD Rom, Vol. 2, ACHCEW, The patients' agenda: what the patient's charter leaves out – the rights you don't yet have in the NHS (London, 1996).
107 On the relative power of the medical profession and patient groups in contemporary Britain, see Salter B., ‘Patients and doctors: reformulating the UK health policy community’, Social Science and Medicine, 57, (2003), pp. 927–36.
108 M. Hilton, Prosperity for all: consumer activism in an era of globalisation (Ithaca, NY, and London, 2009).
109 D. Green, Everyone a private patient (London, 1989).
110 Department of Health, The NHS constitution (London, 2009).