ACT - The Association for Children's Palliative Care

Many of you will already know about the joint ACT/ACH mapping project, funded by the True Colours Trust, that’s been designed to develop a mapping tool to enable the collection of standardised data on the numbers of children with life-limiting and life-threatening conditions and the services that are available to support them. 

The mapping tool will not only help us to develop more robust evidence of the numbers of children with palliative care needs, but also include an expanded national online directory of services, and will have the added benefit of helping to identify where there are gaps in provision and where services should be developed.      

The first year of this project has involved piloting the mapping process model on the Wirral, in partnership with Dr Lynda Brook, Consultant in Children’s Palliative Care at Alder Hey Children’s Hospital.   Data is recorded from all children referred to the three collection sites on the Wirral (the local children’s hospice, children’s community nursing team and hospital-based specialist palliative care team).  Death data is also collected, to establish date, age and place of death as well as date of recognition of the life-limiting condition.  

Overall the data collection has been on time and of a very high standard, with 92% complete data items.   There has been successful identification of children who are known to multiple services and those who have been referred and since died before they used the service.

The next phase of the project will be to roll-out the mapping tool across Merseyside & Cheshire and to identify key partners across the UK to implement the tool on a national basis.