The National Federation of Voluntary Bodies’ project ‘Informing Families of their Child’s Disability’ was presented with an award at the Taoiseach’s Public Service Excellence Awards in Dublin Castle on 8 July 2010 http://www.onegov.ie/eng/Taoiseach's_Awards/

The award was presented at a ceremony in Dublin Castle by an Taoiseach, for the work undertaken to implement the National Best Practice Guidelines for Informing Families of their Child’s Disability on a pilot basis in the Cork Region. This was achieved using a uniquely integrated approach that saw parents and professionals from hospital, community and disability service settings working together to achieve outcomes that place the child and family at the centre of service provision. 

In line with its strong traditional role as an advocate for people with intellectual disability and their families, the National Federation developed the National Best Practice Guidelines for Informing Families of the Child’s Disability through a wide ranging consultation and research process. The guidelines were launched by Minister for Health and Children Mary Harney in 2007. Having identified the evidence-based recommendations, the most important challenge was then to ensure that the research was translated into practice and that the guidelines were implemented on the ground.

With support from the Health Services National Partnership Forum a pilot project took place to implement the guidelines across acute, community and disability service settings in the Cork Region in 2008-2009. The aim of the pilot project was to improve the experiences of families and to provide enhanced support to professionals in their disclosure practice at the time of a child’s diagnosis. Challenges were identified and solutions found in the key areas of disclosure practice below:

• Dissemination of best practice guidelines to all involved professionals (in medical, nursing and allied health disciplines)
• Training in appropriate communication skills and good practice recommendations (including an elearning module - see www.informingfamilies.ie)
• Locations and privacy for communication
• Appropriate and up-to-date information provision (www.informingfamilies.ie)
• Teamwork and liaison to provide continuity of care for children and families

The implementation was successfully completed and welcomed by parents and professionals in both mainstream and disability services in the Cork region. Through this project we have provided groups who wish to implement the guidelines with a roadmap from the Cork experience which can be consulted in designing and implementing local responses. Further information on each of the initiatives undertaken in the Cork pilot project can be accessed by contacting info@informingfamilies.ie. The Cork pilot project was also shortlisted in the Aramark Healthcare Innovation Awards.