2 December 2015 – We contributed to the ‘Acquired Brain Injury Training Day’ Cumbria Partnership NHS FT (+ North Lancashire Team) Sedbergh Health Centre

1 December 2015 – Great twitter chat joined @WeEOLC on Do Not Attempt Cardio Pulmonary Resuscitation #DNACPR. A discussion led 51dUy2D8zJL._AA160_by @SachaLG @katemasters67. See their twitter feeds for discussion of their experiences of DNACPR discussions and decisions

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)


November 2015 – ‘Challenge Cardiff’ University published an interview with Jenny Kitzinger and Celia Kitzinger Screenshot 2016-07-03 12.14.32
conducted by a ‘service user’ –  Karen Turner, whose husband has been in a minimally conscious state for several years.
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24 November 2015 – We hosted a consultation stakeholders in Wales on ‘Increasing understanding and uptake of Advance Decisions in Wales’ – a commission to Jenny Kitzinger and Celia Kitzinger, via the Public Policy Institute for Wales, to produce a briefing for the Welsh Government. More about the briefing here.
Acknowledgement – Many thanks to everyone who came along. Contributors included: Sally Anstey (Senior Lecturer, School of Healthcare Sciences Cardiff University), Ian Back (Consultant in Palliative Medicine,Y Bwthyn Palliative Care Unit Cwm Taf Health Board), Idris Baker (Lead Clinician, Swansea Hospital support), Julia Barrell  (Mental Capacity Act Manager, Patient Safety Team, Cardiff and Vale UHB), Teena Clouston (Reader, Occupational Therapist, School of Health Sciences, Cardiff University), Angelita Cruz IConsultant Clinical Neuropsychologist, St Peters Hospital); Nicola Davis-Job (Acute Care & Leadership Adviser, RCN Wales Professional Practice Wales), Alan Doherty (Customer Experience & Research Lead, Office of the Public Guardian), Liz Fahy (Event support, Web developer), Marion Gray (Consultant Psychiatrist (old age and dementia experience), Mental Health Services for Older People, South East Cardiff Team), Thomas Hayes   (Lecturer, Law School, Cardiff University), Lynne Hughes (Country Director, Wales MS Society), Sally Kempson (Community Resource Team (CRT) Nurse, NW Cardiff, Cardiff and Vale UHB), Jenny Kitzinger (Professor of Communications Research, Cardiff University), Celia Kitzinger (Professor, Sociology Department, University of York), Mel Lewis (Lead Nurse Palliative Care, Cardiff and Vale UHB),Christina Maciejewski (Clinical Psychologist, Younger Onset Dementia Service, Mental Health Services for Older People, Llandough Hospital), Paula Major (Event support (MBPsS and carer),  Nicola Massie (CPsychol AFBPsS Senior Counselling Psychologist  Chair Division of Counselling Psychology – Disability Team, Vale of Glamorgan Adult Learning), Rosanne Palmer (Policy Advisor on Health & Social Care, AgeCymru), VeronicaSnow (National End of Life Care programme lead, Dept Palliative Medicine, Velindre Cancer Centre), Martyn Read (Consultant in Anaesthetics and Intensive Care, Critical Care Unit, Cardiff and Vale UHB), Sophie Thomas (Matron – Clinical Services Manager, Paul Sartori Foundation), Renate Thome (Clinical Educator , Paul Sartori Foundation), Caroline Usborn (Clinical Director in Palliative Care, Betsi Cadwaladr University Health Board), Emyr Williams (Senior Research Officer, Public Policy Institute for Wales)

12 November 2015 – National IMCA Conference: ‘Interesting Times – developments for IMCAs in practice and law’. We ran a session on best interests and providing/withholding/withdrawing life-sustaining treatment at this conference (Smart Aston Court Hotel, Derby DE1 2SL)

Julie Latchem's 'PhD corner'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


28 October 2015 – ‘Let’s talk about end of life care’. We  presented at the End of Life Care workshop 2015, run by the Royal College of Nursing and the National Council for Palliative Care, CardiffScreenshot 2015-05-21 16.24.48


21 October 2015 – ‘Palliative, Emotional and Supportive Care’, seminar at Cardiff University. We  presented on ‘Research on the end of life – engagement and impact’. Thanks to Health Care Sciences for hosting this, it was great talking through issues with the many allied health care professionals and nurses who attended the event.

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.coexist-vision

 


 

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’.

Cathy Rentzenbrink (+ JK)

Cathy Rentzenbrink (+ JK)

An enthusiastic audience for these events included a general interested public, and also writers, artists and drama students.

 

 


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”


At the BMA award ceremony

At the BMA award ceremony

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

Legitimacy Medical Treatment


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

ESRC award westminster cropped


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


Screenshot 2015-06-23 23.25.1322 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. LSW-Logo


HI-RES_CCPoster21 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.

POSTNOTE

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 herepolicy-award Luis


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].


Screenshot 2015-07-07 00.30.5621 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.

BPS annual debate


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

Screenshot 2015-04-29 23.52.54


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.

Unseeing eyes2

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.

Screenshot 2015-05-01 21.23.12


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.

Screenshot 2015-04-30 15.27.39


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.

Our health talk online module


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.