The Big Study was funded by the Big Lottery Research Programme and involved collaboration between Together for Short Lives and five academic institutions. It began in Autumn 2010 and concluded in the Summer of 2012. Each academic partner pursued a different strand of enquiry to research how well the palliative care needs of children with life-shortening conditions and their families were being met by services in the West Midlands.
Dr Anne Hunt from the University of Central Lancashire led a team to develop an understanding of the demographic and geographical distribution of children with life-shortening conditions across the West Midlands.
Professor Jane Coad from Coventry University led a team to identify the met and unmet needs of children with life-limiting conditions and their families in the area.
Professor Elizabeth West from the University of Greenwich led an evaluation of the professional network operating across the region - looking at the co-ordination, co-operation and collaboration in the West Midlands Paediatric Palliative Care Network (WMPPCN).
Nick Hex from York Health Economics Consortium led the economic evaluation of service delivery. This work enabled the team to identify the financial burden for families with children with life-shortening conditions, as well as identifying the costs to services for providing care and support to this cohort of children and young people.
Dr Sophie Staniszewska from the University of Warwick led the work on patient and public involvement throughout the study and her team’s work with a parent advisory group has helped steer the study and provided an insight to the context and processes of effective involvement.
Together for Short Lives has produced three reports, based on the findings of the Big Study: