Wednesday saw the launch of our newest addition to the website, a section about family experiences of having a loved one in a permanently vegetative or minimally conscious state. The research was carried out by sisters Jenny and Celia Kitzinger, from the Chronic Disorders of Consciousness Research Centre, whose work is inspired by their experiences with their sister, Polly.

Sixty-five people shared intimate details of their feelings and actions at what was an extremely taxing time for families. They did so in the hope that their experiences would help other people in the same situation. Speakers at the launch included Professor David Menon who is the Head of the Department of Anaesthesia, Principal Investigator in the Wolfson Brain Imaging Centre, and Co-Chair of the Acute Brain Injury Programme at the University of Cambridge. Prof Menon pointed out that there exists no cartographer’s map for families in this situation and that this new resources ‘provides a map from others who’ve wandered about in the wilderness’.

Interviewees who also served on the advisory panel for the project agreed with this view. Gunars Libeks said that he was proud of the resource and the three booklets that came out of the research, one of which is a timeline of events.

Derick Wade, Consultant in Neurological Rehabilitation at the Oxford Centre for Enablement talked about the value of the resource in helping health professionals. He suggested that the website could be used to set agendas for ‘best interest’ meetings – which are set up to establish what is best for a patient. Prof. Lynne Turner Stokes Director of the Regional Rehabilitation Unit and Dunhill Chair of Rehabilitation, and chair of Royal College of Physicians’ working party on Prolonged Disorders of Consciousness said that she found it useful to look at how families’ feelings and opinions change over the course of a loved one’s treatment.

Visit the new section on ‘Family experiences of Vegetative and Minimally Conscious States‘.