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.

In a response to a Parliamentary Question asked by Mark Harper MP, Shadow Minister for Disabled People, about the amount of funding PCTs have received for disabled children’s services, Health Minister Ben Bradshaw has said:

‘All PCTs will receive an above inflation cash increase of 5.5%, a total cash increase of £3.8 billion. The funding for services to support disabled children forms part of this allocation’.

ACT, Every Disabled Child Matters and Whizz-Kidz have now written to all MPS asking them to sign an Early Day Motion (EDM 1427) which calls on the government to provide specific information on the funding allocations made to PCT's to support short breaks, palliative care, community equipment and wheelchair services for disabled children.

ACT (Association for Children’s Palliative Care) will be holding two summer conferences this year in England and Scotland. Both these conferences will be focusing on developing and strengthening children’s palliative care networks, and delegates will hear about the plans to improve a care pathway approach to ACT’s work with children and families.

The conferences will also highlight how professionals can get involved in the ACT and ACH Mapping Project - Making Children with Life-Limiting Conditions Count. Delegates will be able to view the new Talk About Change DVD produced by film-makers the Kosh and supported by ACT. The film was made by young people with life-limiting conditions and aims to show the reality of making the transition from childhood to adulthood knowing that you have a life-limiting condition.

ACT is the only organisation working across the UK to achieve a better quality of life and care for every life-limited child and their family. Over the last 15 years we have lobbied for change, produced targeted research, published best practice and provided practical support to our members to improve services.

Our membership includes parents, hospital and community teams, PCT’s, voluntary organisations, children’s hospices, healthcare professionals and other professionals caring for life-limited children.  This makes us the only organisation that supports and represents all those involved in caring for life-limited children and gives us a strong collective voice in our negotiations for improvements in palliative care for children and young people.   

UK charity ACT (Association for Children’s Palliative Care) has just launched a new Champions Awards scheme designed to recognise excellence in the delivery of services to life-limited children, young people and their families. ACT knows how much parents and carers value the care provided by so many individuals, teams and organisations to their children and wants this hard work to be acknowledged.

ACT is asking children and young people with life-limiting or life-threatening conditions, as well as their parents, family members and carers to tell them about their ‘Champions’. This is to highlight excellence, good practice and innovation in the delivery of care and support to life-limited children, young people and their families.