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Exploring Illness and Social Care Management: Comparing Consumer perspectives of Suffering and the Challenges faced by Service Providers By Blaine Robin This thesis is submitted in partial fulfilment of the requirements for the degree of Doctor of Philosophy awarded by the University of Greenwich June 2010 DECLARATION “I certify that this work has not been accepted in substance for any degree, and is not concurrently being submitted for any degree other than that of Doctor of Philosophy (PhD) being studied at the University of Greenwich. I also declare that this work is the result of my own investigations except where otherwise identified by references and that I have not plagiarised another’s work” 1 ACKNOWLEDGEMENTS I would like to thank my supervisors Dr. Thomas Acton, Dr. Doug Stuart and Dr Richard Wild who have guided me through much of my journey to completion. My first supervisors Dr. Mike Oliver and Dr. Mike Kelly initially inspired me. I would like to thank a number of employers who were supportive at various stages of my studies all of whom provided opportunities to have study time including the Croll family of Millbrook Industries UK. I would like to thank personal friends including: Mrs. Catrina Lambert, the late Ms. Grace Gibson, Mr. Glyn Evans, Aunty Vincia, Ms. Eileen Hughes, Kursaal ward residents, Dr. Obonyo, Dr. Victoria Winson, Mr.Ahmad Khwaja JP and the Rt. Hon David Cameron MP, Mr.Paul and Mrs. Chi Smith, Mr.Junior McLeod and family, Dr. Gavin Brown, Mr. David Melchor, Mr. Sean Brown and Mr. Jamie Cheung. I would also like to make special thanks to my family including: my wife April Naomi Moore Robin, my son Joseph Blaine Robin, my newborn daughter Hannah Grace Robin – who I love in equal measure to her brother and, my brother Bonnie, who my mother described as a “willing soul”1 - a sentiment I acknowledge in equal measure. In addition, I would like to thank all the informants who took part in this study sharing with me valuable insights into their personal and professional lives, in particular those suffering with lupus. I would like to dedicate this thesis to my late mother, and best friend, born to Adelta Stevens and Joshua “Tanta” Doram and later christened Delia Verdan Doram in the village of Marigot on the Island of Dominica, West Indies. She believed in me even when I stumbled along my journey of life. Without her, I would not be the man I am today. Her pain and suffering with lupus was endured all her life to ensure that I became an educated person and to her way of thinking a better person. In dedication to her life and my own, I would like to give thanks to the teachings of Jesus Christ without whom I would be a very different person. 1 His willingness was often recounted in conversations with my mother. The following incident occurred when we lived in Dominica in the 1970s. One evening we were returning from our farm when the Bedford van broke down. In those days there was no breakdown service. The family relied on Bonnie , an 11 year old, to run from the village of Calibishe to Sams Gutter, Marigot as this was where the mechanic was based 10 miles away. Several hours later in utter darkness the mechanic arrived with Bonnie. 2 ABSTRACT This thesis as a case study explored the narratives of a convenience sample of four women with the disease known as lupus. The author used an ethnographic approach to investigate how these women coped and how service providers, including carers, met their needs. The author used participant observation in his role as Occupational Therapist (and son) to gain access to this sample. He asked them to keep written diaries about their day-to-day experiences of living with the illness. These diaries were later given to the author to read, study and analyse. Additionally, the author’s personal ethnography as a son was submitted as data for this study. This ethnographic writing centred on the life of one sole informant, his mother, who later died with the disease in hospital. Qualitative data analysis (QDA) techniques with grounded theory origins (Glaser and Strauss 1965,1967 and Charmaz 2007) was used to analyse the data. The techniques comprised of line-by-line analysis and coding, constant comparison of cases, thematic analysis, theoretical sampling and the development of framework tables. The study revealed a range of findings, which were later conceptualised into an ethnographic ontology of lupus. First, people encounter a daily struggle to cope with illness symptoms. Second, there was evidence of poor communication between the hospital ward staff (and carers) and failure for social workers to be the main advisor/counsellor of end of life care needs including missing referrals to hospice services. Health and social care professionals sometimes struggle to provide a basic level of service leading to a “know do” gap. This leads to an inconsistent level of end of life care for the individual and limited support for the identified carers. Narratives in diary form have a role to play in helping clinical teams develop meaningful insights into their life of their patients. Clinical teams in turn need to be forthright enough to develop “death covenants” for all patients (and their carers) with palliative care needs. Developing these tools and including them as intervention turn will lead to more cohesive practices within health and social care (Dean 1996, Dean and Melrose 1996, Mol 2008). 3 CONTENTS 1. CHAPTER ONE: SETTING THE SCENE ....................................................................................7 1.1 INTRODUCTION.......................................................................................................................7 1.2 RESEARCH OBJECTIVE ONE ..........................................................................................................10 1.3 RESEARCH OBJECTIVE TWO .........................................................................................................13 1.4 RESEARCH OBJECTIVE THREE .......................................................................................................16 1. 5 CLINICAL REPRESENTATIONS OF LUPUS .......................................................................................20 2. CHAPTER TWO - HEALTH AND SOCIAL SERVICES PROVIDER CONTEXT ...............29 2.1 INTRODUCTION .............................................................................................................................29 2.2 THE ROLE OF CENTRAL GOVERNMENT (1970 – 2000) ...................................................................30 2.3 HEALTH AND SOCIAL SERVICE ROLES AND RESPONSIBILITIES 2000 - PRESENT .............................32 2.4 THE ROLE OF CENTRAL GOVERNMENT: HOW ARE HEALTH AND SOCIAL SERVICES MANAGED? .....34 2.5 THE CONSUMER OF HEALTH AND SOCIAL CARE: HOLDING THE SYSTEM TO ACCOUNT ..................39 2.6 RELEVANCE OF LEGISLATION TO LUPUS INFORMANTS AND SOCIAL SERVICE DEPARTMENTS ........44 2.7 HEALTH INEQUALITIES .................................................................................................................45 3. CHAPTER THREE: A THEORETICAL METHODOLOGY AND PRACTICAL LITERATURE REVIEW....................................................................................................................49 3.1 INTRODUCTION .............................................................................................................................49 3.2 EPISTEMOLOGICAL AND ONTOLOGICAL POSITION .........................................................................52 3.3 ONTOLOGY: CRITICAL REALISM...................................................................................................55 3.4 SYMBOLIC INTERACTIONISM ........................................................................................................57 3.5 MEDICAL SOCIOLOGY, POLITICS AND THEORETICAL PERSPECTIVES..............................................63 3.6 SOCIOLOGY IN POST WAR BRITAIN ...............................................................................................64 3.7 CRITIQUE OF PARSONS’ SICK ROLE THEORY ................................................................................67 3.8 SOCIAL CONSTRUCTION OF HEALTH AND ILLNESS ........................................................................69 3.9 MEDICALISATION CRITIQUE..........................................................................................................71 3.10 THE ROLE OF NARRATIVES WITHIN THE SOCIOLOGY OF HEALTH .................................................74 3.11 CARERS IN CHRONIC ILLNESS......................................................................................................84 4. CHAPTER FOUR: RESEARCH METHODS..............................................................................90 4.1 INTRODUCTION .............................................................................................................................90 4.2 ETHNOGRAPHIC CASE STUDY........................................................................................................91 4.3 THE AUTHOR’S REFLECTIVE USE OF SELF......................................................................................96 4.4 CASE STUDY SETTING ...................................................................................................................97 4.5 INFORMANTS...............................................................................................................................98 4.6 METHOD OF MAKING CONTACT AND DATA COLLECTION...............................................................99

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