C2D2 sponsors launch of new resource for family members of people in vegetative or minimally conscious states

Posted on 17 September 2014

Featuring over 250 in-depth interview film clips, the new resource explores family experiences of having a relative in a vegetative or minimally conscious state. It explains key terms, reflects on the challenging choices families confront and outlines the clinical and legal context of decision-making about medical treatment.

The special launch event takes place from 4-7pm on 17 September at Winchester House, London. Speakers will include Professor Jenny Kitzinger, Professor Celia Kitzinger, Professor Lynne Turner-Stokes, Chair of the Royal College of Physicians’ working party that wrote the national clinical guidelines for the treatment of prolonged disorders of consciousness, and Professor David Menon, Head of the Division of Anaesthesia at the University of Cambridge. Guests attending include family members involved in the project, clinicians, practitioners, charity representatives and health correspondents. An exhibition featuring artwork, poems and postcards from family members will also be on display during a drinks reception.

The new resource has been compiled by Professor Celia Kitzinger and Professor Jenny Kitzinger, Co-Directors of the York-Cardiff Chronic Disorders of Consciousness Research Centre (CDOC), and is hosted by the award-winning charity website healthtalkonline.org at
http://healthtalkonline.org/peoples-experiences/nerves-brain

The resource presents findings from nearly four years’ research funded by C2D2, the Economic and Social Research Council (ESRC), and the Health Experiences Research Group (HERG) in the Department of Primary Care Health Sciences at the University of Oxford. It features interviews with 65 different family members as well as talks from leading medical practitioners in the field of serious brain injury.

This new section of healthtalk.org will provide support and information for families, health professionals, case workers, lawyers and others involved in work with this group of patients. Helping to improve communication between medical practitioners and family members, it will also be useful in professional training for those working within health services and law, and for journalists reporting on issues around ‘coma’.

Professor Derick Wade, a neuro-rehabilitation consultant from the Oxford Centre for Enablement, said: “It is an excellent website and should be the resource for Health Care professionals, including managers and commissioners, because it covers all aspects and presents most of the possible points of view. It is well laid out and can be read, listened to and looked at in small bits easily.”

Notes to editors:

Healthtalk.org is a charity website accredited by the Department of Health’s Information Standard for health information the public can trust. The website provides information and support for 85 health conditions, to over two million people per year. Patient experience videos from the website are used as teaching materials in more than 80% of UK medical schools.
Read more about C2D2's sponsorship of CDOC
CDOC website
Original University press release

C2D2 sponsors launch of new resource for family members of people in vegetative or minimally conscious states

Notes to editors:

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