Abstract

In 2016 Acorns Hospice Trust commissioned Azeus UK, the provider of its new IT system, to produce an interactive web-based portal for use by children, young people and families. This portal is an exciting bespoke development that enhances the hospice database system. The portal reaches out to the hospice users and their families to facilitate communication and enabling them to access their own information in real time helping to ensure hospice teams are working with data that is accurate. With unique log-ins the Portal users can view their appointments, calendar and put in booking requests both for hospice beds, support groups, therapies and activities. They are also able to provide feedback and get news on upcoming events. The interactive nature of the portal provides a platform for two way communication enabling families to send vital bits of information directly to the hospice team where they can be attached to the child’s record, while hospice staff can upload photographs, videos and drawings enabling the family to log-on offering them reassurance and on-going involvement even when their child is on a short break. A blog-type diary is also available for each user. They can upload media content, create scrapbooks and express their feelings in pictorial as well as written format, thus enabling staff to exploit creativity as a tool in managing the condition and to understand the thoughts and feelings of the child and family over a period of time. There is also the ability to develop secure chat facility and professional one-to-one support on line. The portal’s user interface resembles the standard social media concepts of today’s IT-driven world, thus minimising the need for any user training. IT professionals, Acorns staff and ambassadors have all been involved in the portal’s design and content.