27 November 2015 – Wellcome funded seminar series on ‘Science Fiction and the Medical Humanities‘. Jenny Kitzinger talked on “Science Fiction, ethics and the body: clones, coma patients and organ harvesting” (Wolfson Medical School, Glasgow University, 27 November 2015)
5th-6th November 2015 – we held two days of the ‘Coma and Disorders of Consciousness’ Art Exhibition and talks and debate at Badby Park centre, Daventry – discussion with a wide range of staff and families. Julie Latchem presented her research into physiotherapy. Jenny Kitzinger and Celia Kitzinger presented the ‘healthtalk.org.uk resource bout vegetative and minimally conscious states and discussed the Mental Capacity Act. The charity ‘Advance Decisions Assistance’ presented on how to refuse medical treatments in advance. Play of Light theatre did their wonderful puppet show…and much, much more including Julie Latchem’s display about her ethnographic work in care centres. For further details see Evaluation of Training/Arts Event – Badby Park Care/Rehab Centre, Daventry
14 October 2015 – CDoC stall and speakers contributed to the GW4 ‘Dying with Reduced Agency conference’. The conference was an opportunity to discuss issues such as mental capacity and decision making across the boundaries of practice/theory.
13 October 2015 – The CDoC exhibition was on display at Hamilton House, Bristol – there was also a performance of the shadow puppet theatre about ‘coma’. We were also delighted to welcome Cathy Rentzenbrink who gave a reading from her memoir “The Last Act of Love’.
16 October 2015: A Good Death – Planning ahead, Organised by Quaker Concern, Dying and Death and held at the Quaker Meeting House, Friargate, York. Celia Kitzinger & Sue Wilkinson were invited speakers and presented a workshop and follow-up ‘clinic’ on advance decisions to refuse treatment
3 October 2015: Advance Decisions Workshop Celia Kitzinger & Sue Wilkinson presented a workshop and follow-up ‘clinic’ on advance decisions to refuse treatment as part of the York Older People’s Assembly 50+ Festival. Programme available here: http://www.yorkassembly.org.uk/15FestivalProgramme.pdf
10th September 2015 – British Sociological Association, Medical Sociology Conference 2015 – Julie Latchem spoke about “Caring Relations at the Margins of Neurological Care Home Life: The Rehabilitative Work of Hotel Service Staff”
7th September 2015 – The British Medical Association awarded our healthtalk.org resource the BMA 2015 award for ‘Information on Ethical Issues’ Celia Kitzinger and Jenny Kitzinger attended the award ceremony, along with family representatives from the advisory group: Margaret Kellas and Gunars Libeks
1st September 2015 Publication of ‘The Legitimacy of Medical Treatment: what role for the medical exception’ edited by Sara Fovargue and Alexandra Mullock. A collection reflecting on the development and introduction of treatments such as abortion, organ donation, gender reassignment, non-therapeutic cosmetic surgery and life-extending interventions for patients in vegetative state. This book examines the various factors that legitimatise a medical procedure.
4th August 2015 – Julie Latchem delivered a workshop ‘Prolonged disorders of consciousness – Family perspectives and experiences of physiotherapy’ to inpatient physiotherapists at The Heath Hospital, Cardiff
23 June 2015. We won joint 1st prize from the ESRC for ‘Outstanding Impact in Society’ for the healthtalk.org resource. The ESRC commissioned a short film about the impact of our work – including lovely shots of the shadow puppetry developed by Play of Light theatre – see it here
22 June 2015 The exhibition of ‘Consciousness and coma’ art was on display at the Hayden Ellis Building in Cardiff from the 22nd to the 24th June. On Monday the 22nd we hosted a lunch time theatre performance, private viewing for invited artists followed by a discussion of creativity. In the evening a second, public, performance was accompanied by a discussion – led by Professor Frank Sengpeil – debating what is now known about consciousness and how one can assess it using novel techniques. This event was sponsored by the Learned Society of Wales and the Wellcome Trust.
21 June – “Consciousness and coma: an exploration through art and science” – We hosted a lively event at the Abacus centre in Cardiff – an exhibition of art about coma, a debate about consciousness and our shadow puppet performance from ‘Playoflight’ theatre, exploring family reflections about the experience of having a relative in a long term coma. See a short youtube about the exhibition here
18 June 2015: Jenny Kitzinger presented at the annual Mason Institute – as part of a panel: ‘Beyond the Hype in the Delivery of Future Medicines’. You can see all the lectures from the afternoon here
15th and 17th June 2015 – Julie Latchem delivered a workshop ‘Prolonged disorders of consciousness – Family perspectives and experiences of physiotherapy’ to (a) a multidisplinary therapy team at Rookwood Hospital, Cardiff, (b) Cardiff and Vale Speech and Language therapists.
10 June 2015 ‘Increasing impact through parliamentary engagement’. (Cardiff). We contributed to this seminar on how to influence policy. Other speakers included Dr Chris Tyler, Director of the Parliamentary Office of Science and Technology; Stephen Aldhouse, Committee Specialist from the House of Commons: Health Select Committee and Liz Price, Parliament Outreach Service.
26 May 2015 – We have been awarded Cardiff University’s 2015 award from Impact on Policy. View a youtube piece about the work, which discusses its impact on national clinical guidelines and public debate here.
23 May 2015 Sue Wilkinson and Celia Kitzinger convened a workshop on Advance Decisions as part of the Before I Die Festival in York during national Dying Awareness Week. [more information click here].
21 May 2015 Simon Halliday presented at the Mason Institute at Edinburgh University. The topic of his presentation was: “An Assessment of the Court’s Role in the Withdrawal of Clinically Assisted Nutrition and Hydration from Patients in the Permanent Vegetative State”. You can see his powerpoint and a film of his talk here
19 May 2015 Jenny Kitzinger published a piece ‘Dying Matters‘ in ‘The Conversation’ promoting the importance of listening to patient’s wishes, and launching the GW4 initiative on dying with reduced capacity.
6 May 2015 Celia Kitzinger was an invited speaker at the British Psychological Society Annual Conference in Liverpool for the panel debate on Palliative and End-of-Life Care. See full programme here
23 April 2015 Our seminar at the University of York, co-organised jointly with Minster Law Solicitors, was called Brain Injury Rehabilitation: The Unseen and Unknown . It was attended by around 80 people – largely working in health and social care but also some lawyers. Speakers included Julie Latchem, Celia Kitzinger and Jenny Kitzinger, Ruth Perrott, Rogish Miles, and members of the Minster Law team.
We also had our first public showings of two arts collaborations: Seth Oliver’s art installation on brain injury and the shadow puppet show on the vegetative and minimally conscious states by Play of Light Theatre – both with sound tracks composed from our recorded research interviews.
April– Grant bid successes:
- Frank Sengpiel led a successful bid for a Wellcome Trust ‘Public Engagement’ grant via Cardiff’s ISSF to curate an exhibition of CDoC art collaborations in Cardiff and to host a debate on the role of neuroscience and new techniques of brain imaging in relation to disorders of consciousness.
- Jenny Kitzinger led a successful bid to GW4 to develop work on ‘Dying with Reduced Agency’ (in collaboration with colleagues at Bath, Bristol and Exeter).
- Julie Latchem and Jenny Kitzinger, along with colleagues in Health Sciences (Gail Boniface) and PCUTL (Clare Kell) were awarded ESRC acceleration funds to further develop CDoC training and support for allied health professionals.
April 2015 We finished a short film about the ‘Before I Die’ festivals curated by Jenny Kitzinger and Celia Kitzinger – a festival to encourage discussion of death and dying. The next series of ‘Before I Die’ events will be in York May, 2015.
April 2015 – A ‘POST’ briefing for MPs has been published by the Parliamentary Office of Science and Technology – linking with our publications and the healthtalk.org resource representing family perspectives on vegetative and minimally conscious states.
27 March 2015 – We presented at a conference New Beginnings in Mental Health and Social Care Conference, Cumbria County Council and Cumbria Partnership NHS Foundation, Penrith.
18 March 2015 – The Guardian University Awards – These awards showcase best practice and innovation – our healthtalk resource was submitted by Cardiff University as an exemplar of high impact research, and was awarded joint runner up in the Guardian’s impact category. Read more at The Guardian research impact awards
4 March 2015 We spoke at a conference, Prolonged Disorders of Consciousness: The Present and the Horizon, organised by the Central England Rehabilitation Unit, at Stratford Manor Hotel. For more information about conference click here.
23 Feb 2015 Presented our research to bioscience students at Cardiff University – generating debate about the representation of neuroscience.
11 Feb 2015 We ran a training day at Gloucestershire Royal Hospital with the Brain Injury Team
9 February 2015, ESRC Impact Acceleration Award – Fellowship (University of York). This Fellowship will enable Professor Celia Kitzinger to take up a secondment with Lord Stone of Blackheath – a former trustee of the charity that produces healthtalk.org.uk – to explore the processes and procedures that would be involved in reviewing, and possibly changing, one aspect of the laws relating to vegetative patients (Practice Direction 9E para 5). A key finding of our research is that many families believe that their relative would not wish to be kept alive in this state long term and that neither they, nor the clinical team believe that life-extending treatments are in the patient’s best interests. However, Practice Direction 9E para. 5 requires a hearing in the Court of Protection before artificial nutrition and hydration (ANH) can be withdrawn from these patients and our research shows that this can act as an obstacle to timely enactment of best interests decisions. Our research also highlights that Practice Direction 9E, para 5 is an anomalous requirement both in relation to withdrawal of ANH from other patients, and in relation to withdrawal from vegetative patients in other jurisdictions. The aim of the Fellowship is to research the best way of creating legal and policy change, allowing withdrawal of ANH in the best interests of the patient without the delay and deterrence imposed by the necessity for legal review – and also to establish a robust procedure that might take the place of legal review.
3 February 2015, BBC Radio 5 Live – we contributed to a discussion about brain injury and rehabilitation with Phil Williams, 22.30pm.
22 January 2015, National Rehabilitation Hospital, Dublin. We gave a public lecture and introduced the resource about the vegetative and minimally conscious state at www.healthtalk.org. The public lecture was followed by a meeting with the disorders of consciousness working group at the hospital.
14 January 2015, ‘Medicine, Science and Culture’ seminar series, Cardiff. Professor Keir Waddington presented on ‘Imaginary investments: History, fiction and the writing of illness narratives’ . Some narratives of chronic disorder of consciousness seem to draw on a Gothic narrative reminiscent of Shelley’s Frankenstein, but how should we understand such narratives and how should we locate them? Keir explored how illness narratives read with a sensitivity to history and fictions can move our understanding of the stories constructed beyond the boundaries of the clinical encounter to explore a different kind of textual community where history, memory, mythologies, and fictional representations meet.
Conferences on end of life decision-making: exploring Christian perspectives
Gloucester and Cardiff conference (November -December 2016) We worked with partners to host two conference on end of life decision-making, the role of churches and ecumenical perspectives on ethics and theology. Panels addressed a wide range of issues, including diverse perspectives on treatment withdrawal and exploring advance decisions.
28th Nov and 1st Dec 2016 We were given permission to live tweet from a court case concerning Paul Briggs – considering continuation/withdrawal of ltreatment. The first time, as far as we know, that researchers have tweeted from a Court of Protection hearing about life-prolonging treatment. We tweeted from @cdocuk and our personal accounts (@KitzingerCelia & @JennyKitzinger) using #COPBriggs.
We contributed to a panel discussion of Christian perspectives on death and dying, Radio Wales, 23rd Nov 2016
16th and 17th Nov 2016 we co-hosted public events with Cathy Rentzenbrink to discuss her memoir about her brother’s catastrophic brain injury, and eventual death after on of the early UK court cases for treatment withdrawal. This was a collaboration with ‘Cardiff BookTalk’ and with the Being Human Festival.
16th and 17th Nov 2016 the latest performances of ‘Where Are You Now?’ as part of a conference (the 16th) and then part of the Being Human Festival (17th).
12th Nov 2016 – We co-hosted a poetry reading and concert – with sonnets and the inaugural performances of music specially composed to reflect new ‘coma’ research as part of the ESRC Festival of Social Sciences
16th and 17th Nov 2016 our co-produced art exhibition presenting new visual images of the vegetative state and family experiences was on display at ‘Brickstock’ as part of the Being Human Festival.
15th Nov 2016 – We contributed to a panel discussion on Radio 3’s ‘Free Thinking’ programme about the Being Human festival – reflecting on cultural images of coma (broadcast 10pm) http://www.bbc.co.uk/programmes/p04gl29m (28mins in)
10th – 11th Nov. 2016 – ER-WCPT Congress 2016 Liverpool (European Region of the World Confederation of Physical Therapy). Julie Latchem presented on ‘Developing a multimedia learning resource for Allied Health Professionals: exploring the challenges of prolonged disorders of consciousness’
Disorders of Consciousness – National Conference
“Challenges for Allied Health Professionals working with disorders of consciousness patients and their families: Introducing a new e-learning resource (Prof. Jenny Kitzinger,and Julie Latchem) National Conference on the recent advances in the assessment, diagnosis and multidisciplinary management of people with Disorders of Consciousness (DOC) 13 & 14 September 2016 Holy Cross Hospital, Hampshire.
Our case study of delay in stopping life-prolonging treatment published in Journal of Medical Ethics: goo.gl/5Y5SSw National coverage of this case including on Radio 4 The Today programme and BBC2’s Victoria Derbyshire show
8th August 2016 – BBC Radio 4, “Inside the Ethics Committee”: Celia Kitzinger, Tor Butler Cole and Lynne Turner Stokes discussed the ethics of artificial nutrition and hydration for a patient in a permanent vegetative state. Listen to the programme.
21st July to 13th October 2016 – The ‘Art of Caring’ exhibition at St Pancras Hospital, London – includes work from CDoC collaboration with Play of Light theatre.
30th June 2016 – Highlighting why families of VS/MCS patients so often wish their relative had an advance decision- on panel with Tor Butler-Cole, Chair of Compassion in Dying at the lovely Conway building, London.
23rd June 2016 – Our radio exploration of family accounts – “Coma Stories” – broadcast on Radio Wales.
22nd June 2016 – The final workshop group of Occupation Therapists – training in vegetative and minimally conscious states. These workshops are being filmed and will form part of an on-line teaching tool available soon.
24th May 2016 The Art of Caring: An art exhibition exploring the art of caring from many viewpoints, includes designs from our work with Karin Jashapara on her shadow puppetry theatre: ‘Where are you now?’ The Rose Theatre, Kingston, KT1 1HL http://www.artofcaring.org.uk/
18th May 2016 – CDoC co-organised an event on digital storytelling and ‘giving voice’ to patient and family experience https://cardiffdigitalnetwork.org/2016/05/23/digital-storytelling/
Training Allied Health Professional
20th & 22 April 2016 – workshop training to Allied Health Professionals, AHP roles – diagnosis and prognosis of VS/MCS, core skills for AHPs, Communication skills, Best Interests, ethics and law. Health Sciences, Cardiff University.
17 March 2016 – ‘Rehabilitation and Prolonged Disorders of Consciousness’ – Huntercombe Group and Case Management Services, We will be presenting at this conference – looking at family perspectives, other sessions will address pain management, assistive technology, and assessment.
‘She Never Woke Up’: image of his sister, reproduced with permission from William Doan. Annals of Internal Medicine. 2016;164(1):W1-W9. doi:10.7326/G15-0014 http://annals.org/article.aspx?articleid=2480038 ©American College of Physicians.
Neuroscience and consciousness
22 February 2016 – Lecture, Double-act on neuroscience and consciousness – discussing science, PR, ethics and responsibility at Cardiff University
11 February 2016 – Interview on BBC Radio 4 Woman’s Hour – Death, end of life choices and Advance Decisions