Towards the Emancipation of Patients: Patients' Experiences and the Patient Movement

TOWARDS THE EMANCIPATION OF PATIENTS......Page 2
Contents......Page 6
List of figures and tables......Page 7
Glossary and abbreviations......Page 8
Preface......Page 11
Preliminary thoughts......Page 14
Four lines of evidence......Page 16
The plan of the book......Page 22
Emancipation movements......Page 26
Alford’s theory......Page 29
The consequences of repression......Page 36
Domination......Page 39
Coercion, repression and oppression......Page 40
Conclusion......Page 45
The patient movement......Page 46
The birth of the patient movement......Page 47
Patient groups, the building blocks of the patient movement......Page 48
Radical and conservative patient groups......Page 50
The actions of radical and conservative patient groups and individual activists......Page 51
My hypothesis that the patient movement is an emancipation movement......Page 53
An unrecognised emancipation movement?......Page 54
Steps towards recognition?......Page 56
Comment......Page 59
The conditions necessary for radicalisation......Page 60
AIMS Association for Improvements in the Maternity Services......Page 61
NAWCH National Association for the Welfare of Children in Hospital......Page 62
BSSG Bristol Survey Support Group......Page 64
RAGE Radiotherapy Action Group Exposure......Page 65
IDDT Insulin Dependent Diabetic Trust......Page 66
APRIL Adverse Psychiatric Reactions Information Link......Page 68
Independent activists......Page 70
The three conditions revisited......Page 71
Comparing radicalisation with the birth of 'oppositional consciousness' in recognised emancipation movements......Page 78
Conclusion......Page 80
Patient groups’ knowledge......Page 82
Activists’ new knowledge......Page 83
The sources of new knowledge......Page 87
Two examples of the sources and uses of new knowledge......Page 93
Conclusion......Page 102
Standards......Page 104
Ideas and insights......Page 105
Principles......Page 106
Patient autonomy......Page 108
Autonomy and the core principles......Page 110
Patient autonomy and medical ethics......Page 111
Identifying new issues......Page 113
Activists’ sense of direction and sequences of standards......Page 114
Principles together support autonomy......Page 117
Principles reviewed in the next chapter......Page 118
Other principles......Page 119
Coda......Page 120
Respect......Page 122
Equity......Page 124
Access......Page 125
Information......Page 126
Safety......Page 131
Choice......Page 135
Shared decision making......Page 138
Support......Page 141
Representation......Page 142
Redress......Page 145
Convictions and schisms......Page 148
Background: lay people in health service governance bodies......Page 149
Research......Page 151
Conflict and stress in CHCs......Page 158
Vignette of two CHCs......Page 159
Relevance to today: radical and conservative patient groups and patient activists......Page 161
Today’s controversies and conflicts......Page 162
Conclusions......Page 166
Conservative and radical doctors......Page 170
Allies: radical doctors......Page 171
The radicalisation of doctors......Page 173
Relations with radical patient groups......Page 176
Antagonists: conservative doctors......Page 177
Patient liaison groups at the medical royal colleges......Page 182
Points arising from the three projects......Page 189
Purposes and interests......Page 192
Conclusion......Page 193
Tracing the origins of new standards......Page 194
The spread of radical patient activism’s principles......Page 197
The spread of radical standards......Page 203
Assessing progress: radical patient activists’ influence on health professionals......Page 205
Assessing progress: activists’ effects on standards of care......Page 207
Conclusions......Page 211
Justice......Page 212
Equality......Page 216
Recognising the patient movement as an emancipation movement......Page 218
Patients as a social group: making sense of the patient side of healthcare......Page 219
Making healthcare worthy of the aspirations of those who give it......Page 221
Improving the quality of healthcare......Page 222
Last words......Page 227
APPENDIX: The principal component analysis......Page 228
References......Page 232
Index......Page 260