Cardiff: Prof Jenny Kitzinger (Director, Cardiff) (School of Journalism, Media & Cultural Studies), Prof Luke Clements (Law), Prof Keir Waddington (History), Dr Andrew Edgar (Philosophy), Dr Dai John (Pharmacy), Julie Latchem (Sociology), Prof Frank Sengpiel (Neuroscience), Prof Daniel Kelly (Healthcare Sciences)," Jakki Cowley (Director of Empowerment Matters, an Advocacy and Mental Capacity Act resource provider).
York: Prof Celia Kitzinger (Director, York), Prof Sarah Nettleton (Sociology), Dr Stephen Holland (Philosophy & Health Science), Dr Alice Hall (English and Related
Literature),, Dr Richard Cookson (Centre for Health Economics), David Stocks (Philosophy), Gillian Loomes (Sociology), Professor Sue Wilkinson (Sociology)
Previous members: Adam Formby (Social Policy and Social Work) Dr Ben Saunders (Sociology), Prof Simon Halliday (Law)
Associates: Nancy Berlinger (Hastings Centre), Jan Lavrijsen (specialist in complex and palliative care, Radboud University Nijmegen Medical Centre), Prof. Penney Lewis (Kings college London), Koonal Shah (Office of Health Economics), Dr Gabby Samuels (Brunel), Prof. Derick Wade (Consultant in Neurorehabilitation at the Oxford Centre for Enablement), Prof. Sue Wilkinson (Loughborough University).
We welcome enquiries from early career researchers and prospective PhD applicants from across the disciplines, and from scientists interested in discipline-hopping internships or sabbaticals in any of the participating departments at either Cardiff University or the University of York.
See below for further information on key staff
Luke Clements is the Cerebra Professor of Law & Director of the Centre for Health and Social Care Law at Cardiff Law School. He has a long-standing interest in the law concerning mental capacity, including involvement with the Law Commission consultations and the legislative scrutiny of the Bill that became the Mental Capacity Act 2005. As a practicing solicitor Luke has a continuing interest in UK and European Court of Human Rights case law concerning ‘best interests’ decisions.
Dr Richard Cookson is researching some of the economic aspects of chronic disorders of consciousness. He is currently looking at the costs of alternative models of legal decision making in cases where physicians and family agree that withdrawing artificial nutrition and hydration would be in the best interests of a PVS patient, and with colleagues is planning a further study of general public views about the value of preventing PVS/MCS health states.
Jakki Cowley is Director of Empowerment Matters, an Advocacy and Mental Capacity Act resource provider. She has been anadvocate since 2003 and specialises in working with patients in Prolonged Disorders of Consciousness as well as supporting their families in best interests decision making. Jakki is currently seconded to Cardiff University working on advocacy & best interests decisions for people in vegetative and minimally conscious states. Jakki advocated on behalf of Mrs N in the recent Court of Protection judgment where withdrawal of CANH was approved for the first time in English law for a person diagnosed as being in a minimally conscious state (click here).
Andrew Edgar is a philosopher of health care and medicine who is working on 'dignity' with respect to both patients with disorders of consciousness and their relatives and carers. He is also interested in narrative approaches to ethics and medicine, and the way in which carers and relatives narrate their experiences and moral concerns.
Alice Hall is a Lecturer in Contemporary and Global Literature in the Department of English and Related Literature with a particular interest in medical humanities. In her work with the Centre, she explores representations of chronic disorders of consciousness in modern literature, autobiography and life writing. Her journal article, “Representing Chronic Disorders of Consciousness: The Problem of Voice in Allende’s Paula", will be published in Literature and Medicine in 2014.
Stephen Holland's involvement with the Research Centre includes co-authoring papers on philosophical and ethical aspects of treatment of patients with chronic disorders of consciousness, including presentations of work at seminars and conferences. He is contributing a philosophical perspective to a public engagement event - a Panel Discussion of "For their own good" - a play about whether the way we kill animals tells us anything about our own demise, and also giving a public lecture on "defining death", both as part of the Before I Die Festival.
Dai is a registered pharmacist and is Reader in Pharmacy Education and Practice at the School of Pharmacy and Pharmaceutical Sciences, Cardiff University. His research and teaching interests include the practice and professionalism of pharmacy and medicines use. Dai became involved with CDoC through his interest in issues relating to the availability, choice, supply and administration to patients of medicines in care homes.
Daniel Kelly holds the Royal College of Nursing Chair in Nursing Research at Cardiff. His academic interests span the social sciences and health care. His main research interests have focussed on the impact and experience of illness - particularly in the context of palliative care – as well as enhancing the potential of nursing and workforce issues. He is working with the CDoC data to explore family experiences of the palliative care issues for vegetative and minimally conscious patients.
Celia Kitzinger is a Chartered Psychologist, a Fellow of the British Psychological Society, and Professor in the Department of Sociology at the University of York. Her work as Co-Director of the Cardiff-York Coma and Disorders of Consciousness Research Centre builds on earlier research on other health-related issues largely relating to pregnancy and childbirth and to doctor/patient communication. She is also a specialist in qualitative research methodologies (especially conversation analysis) and is PI for the ESRC-funded seminar series on advance decisions to refuse treatment. She has been honoured with a Distinguished Book Award from the American Psychological Association and an Outstanding Research Award from the British Psychological Society (Qualitative Methods Section) for original research on human interaction.
Jenny Kitzinger is Professor in the School of Journalism, Media and Cultural Studies at Cardiff University. Her work as Co-Director of the Cardiff-York Coma and Disorders of Consciousness Research Centre builds on earlier research on other health/science issues such as AIDS, human genetics and nanotechnology, and she has a special interest in the cultural representation of, and social and ethical debates around, science and technology. Since focussing on the issue of disorders of consciousness she has served on the Royal College of Physicians’ Working Party rewriting guidelines on the management of the ‘vegetative’ state, and the Nuffield Council on Bioethics Working Party on novel neurotechnologies that intervene in the brain. She is also a specialist in qualitative research methodologies (especially focus groups) and has been grant holder on a wide variety of related projects (e.g. exploring how science press officers and journalists operate in the reporting of scientific 'breakthroughs').
Julie has a background as a practicing neurological physiotherapist. Her research to date looks at quality of life, therapeutic interventions and lay perspectives of care and treatment of people with neurological conditions – including disorders of consciousness. Julie has just commenced doctoral study at Cardiff University (funded by an ESRC +3 studentship) in the School of Social Sciences. She is supervised by Professor Joanna Latimer and Dr Sara MacBride-Stewart. Julie's PhD is an ethnography of two neurological rehabilitation settings in the independent sector. Her research explores how the futures of people with severe brain injuries are shaped and negotiated during rehabilitation.
Gillian Loomes will be starting her PhD (funded by an ESRC 1+3 studentship) in the Sociology Department at York in Autumn 2014. She will join the White Rose Network on Complexity and Disabled Selfhood and her PhD topic is "Overcoming the Barriers: Including People with Profound Intellectual and Multiple Disabilities in Research". Her main supervisor is Celia Kitzinger and her second supervisor will be Professor Paul Martin at Sheffield University. Gillian has a first degree in Law, a PGCert in Special Education, and a PG DipEd in teaching adults with learning difficulties and disabilities. She has worked for the Autism Education Trust and also has research experience with the International Disability Rights Monitor.
Sarah Nettleton has a long standing commitment to developing a sociology of embodiment (or an embodied sociology) in combination with her interests in the social construction of medical knowledge. More recently these interests coalesced in developing a sociology of diagnosis. She is therefore exploring the challenges that the classification of patients as with or without consciousness give rise to. She is also keen to develop more ethnographic work deploying the concept of 'body work' in relation to the long term care of those with chronic disorders of consciousness.
Frank Sengpiel is a neuroscientist with a research interest in vision and in functional brain imaging techniques. For some years, Frank has been the lead for public engagement at the Neuroscience & Mental Health Research Institute at Cardiff University. He is interested in how to improve communication between families of people with disorders of consciousness and clinicians, how to help the families understand the medical science, and how to make the general public engage with the wide-ranging implications of disorders of consciousness.
David has recently completed his MPhil in philosophy (supervisor Steve Holland) on the subject of trust between doctors and patients. He is a retired GP who lives in York and is keen to continue his studies into the philosophy of medicine, especially on the topics of identity, dignity and the nature of death. He hopes to discern ideas in the recordings of the CDoC relatives which might throw light on their predicament and point a way forward.
Keir Waddington is a social historian of medicine who has worked on the history of institutional medicine in nineteenth and twentieth-century Britain and more recently on Gothic narratives of medicine and the laboratory. His involvement in the Research Centre arises from a project he ran with Martin Willis (University of Westminster) on families' accounts of their encounters with institutional medicine and how these narratives are often grounded in literary and historical contexts. His particular interest in CDoC focuses on the places and spaces in which medical encounters occur and how these can be historically situated.
Sue Wilkinson is a Chartered Psychologist, Fellow of the British Psychological Society, and Honorary Professor in the Department of Sociology, University of York. She has a track record of – mostly qualitative - research on health-related issues, including breast cancer, healthcare communication and dementia. Her current interests are focused on end-of-life issues, particularly Advance Decisions to Refuse Treatment, and she is co-founder of the charity, Advance Decisions Assistance (ADA).