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Chronic Disorders of Consciousness Research Centre


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2 April 2014 - 'Digital Stories' about serious brain injury - award:

We have been awarded an 'Impact and Engagement' grant from the Cardiff University's School of Journalism, Media and Cultural Studies. The project, led by Dr Jenny Kidd and Professor Jenny Kitzinger is will involve developing short, creative films about serious brain injury (April 2014).


27 & 28 March, 2014 Royal Hospital for Neuro-disability's first international symposium on rehabilitation after brain injury

Over two days a panel of national and international experts discussed: 'How to navigate the rehabilitation landscape' (Day 1) and 'Changes and challenges in Disorders of Consciousness' (Day 2). Jenny Kitzinger presented research on family perspectives.


13 March 2014 - The House of Lords post-legislative scrutiny of the Mental Capacity Act 2005 –

CDoC gave evidence to the House of Lords committee scrutinising the Mental Capacity Act 2005. Our evidence, along with evidence from over 200 others, informed the conclusion that vulnerable adults are being failed by the Act designed to protect and empower them. Social workers, healthcare professionals and others involved in the care of vulnerable adults are not aware of the Mental Capacity Act, and are failing to implement it. The Committee is recommending that an independent body is given responsibility for oversight of the Act in order to drive forward vital changes in practice [www.parliament.uk/business/committees/committees-a-z/lords-select/mental-capacity-act-2005/news/mca-press-release---13-march-2014/]


11 March 2014 - ‘The Diving Bell and the Butterfly’, Public Discussion

Jenny Kitzinger joined a public engagement discussion of representation of locked-in syndrome in the film based on the novel by Jean-Dominique Bauby. She presented evidence from our research about the confusion between ‘locked in’syndrome and serious brain injury, alongside a panel of experts (from neuroscience, philosophy and literature) [www.cardiffsciscreen.co.uk/film/diving-bell-and-butterfly]


13 February 2014 - Open lecture series at the Royal Hospital for Neuro-Disability

Jenny Kitzinger presented our work under the title: Serious medical treatment decisions about people in a vegetative or minimally conscious state: the Mental Capacity Act and family experiences of 'best interests'. (13th Feb 2014, 4.30pm)


12 December 2013 - Launch of the updated Royal College of Physicians' guidelines on management of patients in vegetative and low awareness states

The research of the York-Cardiff Chronic Disorders of Consciousness group was represented at this conference by Jenny Kitzinger. Jenny presented a reflection on the views and experiences of patients' families as informed by our own research alongside a systematic review of all available evidence and consultations with families on the draft guidelines.

Watch Jenny Kitzinger discussing the role of the family in serious medical treatment decisions


21-22 November 2013 - London Conference of the York-Cardiff Chronic Disorders of Consciousness Research Centre,  Royal College of Physicians, London.

A research  bid seminar in conjunction with our practitioner colleagues, including Derick Wade, Consultant in Neurorehabilitation at the Oxford Centre for Enablement and Jan Lavrijsen, a physician at Radboud University Nijmegen Medical Centre specializing in complex and palliative care, and a member of the European Task Force on Disorders of Consciousness.


29 November 2013 - Controversies in Critical Care – to live or let die? Meeting of the Critical Care Medicine Society of the Royal Society of Medicine, London

This meeting will covered a range of different areas of controversies within Critical Care Medicine clinical practice. ''It is hoped that this meeting will enable attendees to participate in a discussion which may help shape future practice within the UK."


24th October 2013 - How can TV drama represent family experiences of long term 'coma'?

Professor Jenny Kitzinger (Cardiff School of Journalism, Media and Cultural Studies (JOMEC)) and Erika Hossington (Series Producer, Casualty, BBC Cymru Wales) presented at an Expertise Exchange event. The event was a collaboration between JOMEC and the Royal Television Society.  It brought together both academic and practice expertise with the aim of giving those involved in TV production an insight into academic scrutiny of their work whilst providing academics with an opportunity to better understand the experiences of those working in the industry.  The spirit of the encounter was to address the question 'What do we DO about ....?' with a view to building links between industry and practice via hearing, reflecting, and eventually acting. As a result of this event Prof Jenny Kitzinger and Erika Hossington are discussing a potential storyline for 'Casualty' about people in vegetative states.


25 & 26 September 2013 - Chronic Disorders and Diseases Conference, Ron Cooke Hub, University of York

Conference attendees look at the Postcard Exhibition
Conference attendees look at the Postcard Exhibition

This Chronic Disorders and Diseases Conference was designed to showcase the various research projects funded by Wellcome through its Institutional Strategic Support Fund award to the University of York. A poster about our work and the Postcard Exhibition were on display in the foyer and four members of the group presented snapshots of their current projects.

  • Alice Hall described how Isabel Allende's Paula brings together fiction and memoir forms to explore important debates about voicelessness in relation to chronic disorders of consciousness.
  • Stephen Holland reported on the ways in which our interview data support the view that permanently vegetative patients are in a strange state, being neither straightforwardly alive nor simply dead
  • Celia Kitzinger discussed the implications of what our interviewees say for end-of-life planning, especially in relation to Advance Decisions to refuse treatment
  • Simon Halliday showed that, in the perceptions of families of patients with chronic disorders of consciousness, law is something of a double-edged sword - both empowering and disempowering in their attempts to negotiate the best interests of their relative.

19 September 2013 - Court of Protection Practitioners Association (CoPPA) National Conference "The Secret Court": Lifting the Veil on the Court of Protection, MacDonald Hotel, Manchester

CoPPA is an association of practitioners and researchers concerned to protect and promote the efficiency of Courts in England and Wales in dealing with matters relating to the Court of Protection and to further and improve the knowledge of all persons involved and interested in the law and practice of relating to Court of Protection and Mental Health and Mental Capacity issues. Jenny Kitzinger and Celia Kitzinger gave an invited talk entitled: "Withholding/withdrawing life-sustaining treatments and the personal autonomy of people with chronic disorders of consciousness: Family perspectives". Other speakers include Mr Justice Charles, Tim Spencer-Lane from the Law Commission, Yogi Amin, Head of Public Law at Irwin-Mitchell.


12 September 2013 - Transforming wrong(s) into right(s): The power of ‘proper medical treatment’ Chancellors Conference Centre, University of Manchester

Jenny Kitzinger and Celia Kitzinger's paper on "Proper Medical Treatment" was presented part of this Wellcome-funded seminar which explored the notion of something being ‘proper medical treatment’ - the medical exception discussed in R v BrownR v Bland and by the Law Commission in 1994. Contributors included legal academics, bioethicists, clinicians, regulators and policy-makers. The paper explored how family members construct "proper medical treatment" for their relative and how conflicting views about whether certain medications and procedures (e.g. craniotomy, fMRI scanning, SMART testing, use of tilt tables, clinically assisted nutrition and hydration) do or do not constitute 'proper medical treatment' are constructed and negotiated.


11 September 2013 - BSA Medical Sociology Group 45th Annual Conference, University of York

Sarah Nettleton and Celia Kitzinger presented a paper (co-authored with Jenny Kitzinger) on “Sociology of Diagnosis: Chronic Disorders of Consciousness”. The paper drew on recent theoretical advances in the sociology of diagnosis (Jutel & Nettleton 2011) to explore the way in which ‘consciousness’ is constructed by families and clinicians. You can download a pdf of the slides here. Note that the video which was shown during the talk (available here) is not part of our research but is one of a series of videos of 21-year-old Ryan Diviney we found on YouTube. Ryan is in a vegetative (or minimally conscious) state following an assault and his father posted the videos to “Keep Ryan Relevant”. You can read more about Ryan in an article in the Washington Post here.


5-8 September 2013 - Death, Dying and Disposal 11th International Conference – Theory Meets Practice, Open University Milton Keynes

Stephen Holland
Stephen Holland

Held under the auspices of ASDS (The Association for the Study of Death and Society), DDD11 brought together practitioners and academics from a range of disciplines in the humanities and practice to explore how ideas impact upon the reality of death and dying and how practice impacts upon ideas.

Stephen Holland presented a paper entitled “The Definition of Death and the Ethical Treatment of PVS Patients: Evidence from Interviews with Patients’ Relatives”.

This paper, drawing on interviews with family members to consider the ontological status of patients in PVS, finds that they are only equivocally alive, and considers the implications of this for withdrawing/withholding life-prolonging treatments, and for active euthanasia.

Celia Kitzinger
Celia Kitzinger

Celia Kitzinger presented a paper (based on joint research with Jenny Kitzinger) on “Advance Decisions to Refuse Treatment: Knowledge & Experience of Families of Severely Brain Injured Patients”.

The paper explored the relatively high uptake of Advance Decisions to Refuse Treatment (ADRTs) among family members of people with chronic disorders of consciousness and analysed their accounts for why they have written them and the sorts of refusals they have made.

The social policy implications of these (sometimes draconian) refusals of medical treatment are discussed in relation to the ‘window of opportunity’ for death after catastrophic brain injury.


28-31 August 2013

The Centre presented two papers at the European Sociological Association Conference in Turin, Italy.

The first (by Celia Kitzinger & Jenny Kitzinger) documented families’ experience and views of treatment withdrawal (especially withdrawal of clinically delivered nutrition and hydration) from patients in a permanent vegetative or minimally conscious state. The second was first-authored by our former research assistant, Ben Saunders and contributes to the methodological literature on anonymising interviews and sharing sensitive data with research teams.


22nd August 2013, 6.30pm (repeat Saturday, 7 am) - Living Wills: What Would You Want?

BBC Wales broadcast a half-hour radio program based on our research examining 'Advance Decisions' ('Living Wills') and the particular challenges around serious acquired brain injury. Presented and co-produced by Jenny Kitzinger (Cardiff University), this program drews on our interview data with families, and our work with leading practitioners, to explore some of the complex practical and ethical issues around this topic.


Collaboration with James Nash

James Nash
James Nash

James was given access to some of the 50+ (anonymised) interview transcripts with family members of people in permanent vegetative and minimally conscious states and talked with both Celia Kitzinger and Jenny Kitzinger (Cardiff University) about their research on family experiences.

James Nash says: "I have worked with visual artists, musicians and composers in the past and each collaborative experience has been immensely enriching But this was an unusual collaboration and a very powerful challenge. Like most commissions of substance the writing had many scary moments. One wants to say something ‘true’ and powerful but also show respect to those whose experience is more personal, more ‘real’ than one’s own as an imaginative writer."

James has written three sonnets looking at aspects of coma from differing points of view. He gave an inaugural reading of all three at the ‘Before I Die Festival: a festival for the living about dying', You can read them on his website (http://www.jamesnash.co.uk/) and here you can hear a recording of James talking about the collaboration and reading one of the sonnets.

The Chronic Disorders of Consciousness Research Centre is now exploring the possibility of working with creative artists in other fields (music, dance, theatre) to co-produce new works to engage audiences in challenging and thought-provoking ways.


6 August 2013 - Brocher Foundation Hermance, Switzerland

Brocher Foundation
Celia Kitzinger at the Brocher Foundation in Switzerland

Celia Kitzinger and Jenny Kitzinger were Fellows at the Brocher Foundation in Switzerland which host scientists and experts
in the ethical, legal and social implications of the development of medical research and biotechnologies.

On 6 August they gave a talk about the work of the York-Cardiff Chronic Disorders of Consciousness Research Centre. It was attended by other Fellows at the Foundation, scholars from the University of Geneva, researchers from the World Health Organisation, and representatives of a number of NGOs addressing issues of health and human rights.

Simon Halliday recently presented a paper “Law in Everyday Life and Death: A Socio-Legal Study of Chronic Disorders of Consciousness” at two conferences in North America. At the first conference, the Annual Meeting of the Law and Society Association, Boston, June 2014, Simon delivered the paper in a session on law and health. At the second conference, Law on the Edge: A Meeting of the Canadian and Australian Law and Society Associations, Vancouver, July 2014, the paper was included on a session on ‘Communities at the Edge’.

The research examines empirically the significance of cultural perceptions of legality for the ways in which family members negotiate care, treatment and end-of-life decisions in relation to relatives with chronic disorders of consciousness.  These cultural ‘narratives’ of legality, as they are sometimes called, provide the frameworks through which ordinary people make sense of law in everyday life. A full understanding of the role that law plays in this field of health care, accordingly, requires this kind of cultural perspective on the ‘law in action’.


8 July 2013 - Association for Medical Humanities conference

Alice Hall gave a paper at the Association for Medical Humanities conference on ‘Global Medical Humanities’ held at the University of Aberdeen on the 8 July 2013.

Her paper, entitled ‘Representing Chronic Disorders of Consciousness: Voice in Isabel Allende’s Paula,’ explored representations of voicelessness in Allende’s memoir. In particular, it focused on the legal, ethical and literary challenges associated with reconstructing the voice or story of an individual in a vegetative or minimally conscious state. Here is her presentatoin to the conference: alice hall presentation [589KB]


16th May 2013 - ‘BookTalk’ at ‘Before I Die'

Before I Die
Before I Die - a Festival for the living about dying - BookTalk: ‘Paula’ by Isabelle Allende, May 16th

Alice Hall gave a talk at ‘BookTalk’ at Cardiff University’s ‘Before I Die - a Festival for the living about dying’ alongside Professor Celia Kitzinger (York), Professor Jenny Kitzinger (Cardiff) and Dr Montserrat Lunati (Cardiff).

‘BookTalk’ is a reading group in which members of the public are encouraged to read a particular text in advance – in this case, Isabel Allende’s Paula – and to take part in discussions about it following a series of talks.

Alice’s talk focused on the question of genre in Allende’s memoir and argued that Allende’s complex position as writer, narrator and
a character in the text tells us something important about an individual carer’s subjective experience of coma. Each of the speakers approached the text from a different disciplinary perspective and this helped to encourage a wide-ranging and lively discussion with audience members afterwards.