Services for life-limited children and their families are known to be patchy, but it is difficult to determine what and where the gaps are in service provision.  It has been difficult to establish accurate data on the numbers of children who have life threatening/life limiting conditions and where they live within the UK.  Families state that they don’t know what is available to support them, whilst fragmented services are unable to develop integrated working practices. Understanding the numbers of children and young people with these conditions is essential for the strategic development of services so that the needs of children and families can be appropriately met.

The National Palliative Care Minimum Dataset and Services Mapping Initiative for Children is a new initiative that has been developed to help identify the numbers of children and young people who have either a life-threatening or life-limiting condition within the UK, and to find out what services are available within each local area to meet their needs. The initiative is being facilitated by partnership working between the ACT (Association for Children’s Palliative Care), ACH (Association of Children’s Hospices) and the NHS.

Dowload this Mapping Initiative leaflet to find out more.