27 November 2014, Princess Alexandra Hospital, Brisbane, Australia. We presented our research to an audience of hospital staff (with simultaneous live webcasting to another hospital) and this led into a discussion about decision-making in intensive care, the role of pastoral care and the legal context in Australia.
25 Nov. 2014, Australian Centre for Health Law Research, Brisbane. We presented a seminar discussing translation of research and showcasing our new www.healthtalk.org module on family experiences of VS/MCS.
24 Nov. 2014, Gold Coast Hospital, Brisbane – a public lecture (with simultaneous webcast to a second hospital) on end-of-life decision-making and the vegetative state.
13 Nov. 2014, The Centre for Values, Ethics and the Law in Medicine, University of Sydney. We presented on: “Translating academic work relating to values, ethics and law”, highlighting our new healthtalk.org multimedia web resource for professional training.
3 Nov. 2014, Concord Hospital, Sydney. We presented our research to health care practitioners, social workers and pastoral care professionals (with simultaneous web-cast to a second hospital site)
11 November 2014, St Vincent’s Hospital, Sydney. Jenny Kitzinger led a discussion with the hospital ethics committee, reflecting on the ethical, legal and clinical challenges around disorders of consciousness.
30 October 2014, University of California, San Francisco. Seminar at The Institute for Health and Ageing and the Dept of Social and Behavioral Sciences. We presented on: “End of life planning and the vegetative and minimally conscious state”
24 October 2014 Training for Advocates at Irwin Mitchell, Newcastle. We gave a talk on a training day for Independent Mental Capacity Advocates (and other advocates) at the solicitor’s offices in central Newcastle alongside Jackki Cowley of Empowerment Matters. Our focus was on the healthtalk.org resource with additional time (by request) on Advance Decisions (ADs). There is an interest in capacity building amongst advocates in advice and information about ADs.
16-19 October 2014 in San Diego, California. We presented our work at annual conference of the American Society for Bioethics and Humanities (ASBH) 2014 as part of an international panel on “Improvising Humanity: Using Applied Arts to Improve End-of-Life Care” . We also presented a poster entitled “Inclusivity and the insider/outsider debate: Interrogating empirical data in ‘coma’ research and including family experience in public/professional debate”
16 October 2014 We gave a talk, showcasing the healthtalk.org resource at the conference organised by Switalskis Solicitors The Mental Capacity Act 2005: Sixth Annual Review at the Merchant Adventurers Hall, York. The conference was attended by more than100 solicitors, healthcare practitioners, advocates and others whose work involves Court of Protection business (including the Official Solicitor).
11 October Broadcast of ‘Between the Ears: coma songs‘, Radio 3, 10pm
A half-hour programme using our research to explore coma and the vegetative and minimally conscious state using words, music, poetry and sound. Jenny Kitzinger served as co-producer for the programme, alongside Llinos Jones from Terrier Productions.
10 October 2014 Training for Advocates at Irwin Mitchell, London. Celia Kitzinger gave a talk on a training day for Independent Mental Capacity Advocates (and other advocates) at the solicitor’s offices in central London alongside Jackki Cowley of Empowerment Matters. Our focus was on the healthtalk.org resource.
30 September 2014 Training for Advocates at Irwin Mitchell, Manchester. Celia Kitzinger and family member Margaret Kellas, gave a talk on a training day for Independent Mental Capacity Advocates (and other advocates) at the solicitor’s offices in Manchester alongside Jackki Cowley of Empowerment Matters. Our focus was on the healthtalk.org resource
24 September 2014, St George’s Hospital, London Neuro Intensive Care Unit. ‘Introducing the healthtalk.org module on Family experiences of vegetative and minimally conscious states – reflections for intensive care’ Celia Kitzinger and Jenny Kitzinger, led a training discussion with neuro-intensive care practitioners, using our new online resource at www.healthtalk.org/peoples-experiences/nerves-brain)
17 September 2014, Launch of our new healthtalkonline module, London. We launched our new healthtalk.org module on vegetative and minimally conscious states to an audience of over 100 practitioners. This online resource uses filmed interviews with family members to cover issues ranging from diagnosis to decision-making. It is a resource for families confronting the challenges of having a relative in a disorder of consciousness and also provides material for professional training (e.g. in relation to communication and best interests discussions). The launch event included a panel presentation including members of our advisory group such as Professor David Menon and Professor Lynne Turner-Stokes, and representatives from Headway and from family members who participated in the project. [http://www.healthtalk.org/peoples-experiences/nerves-brain]
11 Sept. 2014, “Futures in Question” conference, Goldsmiths, London. Julie Latchem presented as part of a multidisciplinary collaboration between academics and artists, creating a multimedia performance exploring ‘promise’ through a series of topics, including vegetative and minimally conscious states. The performance included extracts of the filmed interviews from the healthtalk.org resource (selected and worked on by Julie Latchem) and was screened at Goldsmiths University’s ‘Futures in Question’ conference 2014.
14 August 2014 – Keynote, Third Applied Qualitative Research in Psychology Conference, Derby. An invited address by Celia Kitzinger highlighting our various projects, especially the new healthtalk.org resource. For a review see: http://www.socialpsychologyuk.net/sps_blog.html?part_id=176957&post_id=18617&action=view_comments
21st-22nd July 2014 “Personhood” – Cardiff-York Chronic Disorders of Consciousness Research Centres group meeting (York University )., discussing different disciplinary approaches to personhood in the context of ‘coma’.
3 July 2014 – “Caring for those who cannot decide: Clinical, safeguarding and legal aspects of neuro-rehabilitation for those who lack capacity”. (Glenside conference) Jenny Kitzinger gave a presentation to around 100 practitioners of our work on ‘Serious medical treatment decisions and best interests’. We also exhibited the postcard exhibition.
18 June 2014 “Medicine, Science and Culture Research Group’. Julie Latchem presented on: “Safeguarding the future for an incompetent self: the case of ANH withdrawal in disorders of consciousness”, Cardiff University.
16 June 2014 – Annual Meeting of the Law & Society Association, Minneapolis, USA. Simon Halliday presented on “The Costs of Withdrawing Life-Sustaining Treatment from PVS Patients in England and Wales”.
12 -13 June 2014 – “Challenging the Limits: Recent advances in the assessment, diagnosis and MDT management of people with disorders of consciousness.” (Liphook, Hampshire, UK) Julie Latchem and Jenny Kitzinger gave presentations at this conference organised by Holy cross care home group. Jenny talked about “Supporting families and exploring their concerns: introducing the HealthTalkOnline module for people with a relative in a vegetative or minimally conscious state“, Julie presented on: ‘Physiotherapy for people in disorders of consciousness‘.
9 May 2014 – Withholding and Withdrawing Treatment from Patients in a Vegetative or Minimally Conscious State. (10am – 5pm) A conference jointly organised by CDoC and the Court of Protection Practitioners’ Association. A range of legal experts, clinicians and social scientists discussed the ethical, clinical, philosophical, economic, and sociological perspectives of withdrawing treatment from vegetative and minimally conscious patients. Keynote speaker: Mr Justice (Sir Jonathan) Baker of the Family Court Division. Withdrawing Treatment Information (PDF , 519kb)
11-17 May ‘Before I Die’ Festival
Various members of the Cardiff-York Chronic Disorders of Consciousness Research Centre presenting at a series of public engagement events in York during the ‘Before I Die’ festival. We were involved in panels debating the law and the minimally conscious state, a discussion of advance decisions and a reflection on the meaning of death and the role of funerals. (For further information see www.beforeidiefestival.co.uk)
30 May 2014 – Wales Medical Sociology. Julie Latchem presented on “Physiotherapy for brain injured bodies: Family perceptions” (Cardiff University).
30 May 2014 – Annual Meeting of the Law & Society Association, Minneapolis. Simon Halliday presented on ‘The Costs of Withdrawing Life-Sustaining Treatment from PVS Patients in England & Wales’, to the Annual Meeting of the Law & Society Association in Minneapolis, USA on 30th May, 2014.
19 April 2014 – Our Radio Wales programme Another chance to hear our programme ‘Living Wills: what would you want?’ on Radio Wales http://www.bbc.co.uk/programmes/b0380n5c
April 2014 – ‘Digital Stories’ about serious brain injury – pilot grant
We have been awarded an ‘Impact and Engagement’ grant from Cardiff University’s School of Journalism, Media and Cultural Studies. Working with Dr Jenny Kidd and Lisa Heledd Jones (storyworksuk), we will be revisiting our research interviews to develop short, creative films about serious brain injury, including a story exploring cutting edge neuro-technologies such as deep brain stimulation.
April 2014 – ‘Impact through Art’ initiative
Cardiff University was awarded seedcorn funding to CDoC to explore how our research findings can be expressed via diverse media of visual art (working with artist, Seth Oliver) and shadow puppet theatre (working with ‘theatreoflight.co.uk’). This initiative will complement the seedcorn funding provided by University of York to work with two musicians and two visual artists to explore representations of coma.
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). We presented our research on family perspectives, and showed some of the filmed interviews with families collected for the healthtalkonline website.
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 professionals involved in the care of vulnerable adults are often 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
We joined a ‘Sci-Screen’ public engagement discussion of representation of locked-in syndrome in the film based on the novel by Jean-Dominique Bauby. We presented evidence from our research about the confusion between ‘locked in’ syndrome and serious brain injury, alongside experts discussing neuroscience and literature.
27 Feb, 2014 Lent Lectures – Kings College London
Celia Kitzinger presented: ‘Negotiating Selves: Insider/outsider research on chronic disorders of consciousness’
13 February 2014 – Open lecture series at the Royal Hospital for Neuro-Disability
Jenny Kitzinger presented our research findings about: ‘The Mental Capacity Act and family experiences of best interests’ to an audience of clinicians specialising in neuro-rehab and the care of individuals in disorders of consciousness.