A patient and public involvement (PPI) group was set up by the Wolfson Centre for Personalised Medicine at the University of Liverpool, who have been conducting research into drug safety and efficacy with an interest in SJS/TEN. At the meeting held in November last year, it was unanimously agreed that awareness of SJS/TEN must start with the medical professionals and ideas were pulled together to design an SJS awareness Poster. We have been working closely with the research team since 2011 and in April this year, we hosted the third PPI meeting at our premises in Barking.
In attendance were delegates from the research team at the University of Liverpool led by Anita Hanson who provided insight into the scientific aspects of SJS/TEN. Both survivors and their carers enlightened the Liverpool team by sharing their insight into living with the conditions. A number of issues from all sides including challenges with accessing aftercare support for those being affected were raised as concerns for deliberation. The meeting also reviewed a first draft of the poster design in preparation for our nationwide awareness campaign which was agreed to be a very important task for all involved.