ACT - The Association for Children's Palliative Care

The Confidential Enquiry into Maternal and Child Health (CEMACH) has published a world first study into the deaths of children report (published 13 May 2008).  The study aimed to identify ways to improve health and social care outcomes for children and is based on a review of over 900 child deaths in three reguions of England, Wales and Northern Ireland in 2006.

In particular the report highlighted:

• The need for children to be cared for by paediatric trained healthcare professionals, especially in acute and primary care settings.
• A risk that serious illness can be missed in children.
• A larger Confidential Enquiry should provide valuable lessons to improve the care of children.

You can download the report - Why Children Die: A pilot Study from the CEMACH website

Overhaul of care and support for adults and older people in England: ACT and Children’s Hospices UK urge members to raise awareness for life-limited children as they make the transition to adult services

On Monday 12th May the government launched a six-month public consultation asking for views on the future of care and support for adults and older people in England.  Overhauling this system is urgently needed in order to meet the needs of a rapidly ageing population. An online public consultation is now open and over the next six months the government will be asking the public and key stakeholders for their views at a series of regional events across England.  Government says they will ask for views about care and support to create a system that:

·    Promotes independence and choice and control for everyone who uses the care and support system.

·    Ensures everyone can receive the high quality care and support they need, and that government support should be targeted at the most in need.

·    Is affordable for government, individuals and families in the long term.

Although this consultation will focus on older people, we want to highlight that it is also about care and support for adults and both ACT and Children’s Hospices UK want to ensure that the needs of young people with life-limiting conditions and disabilities who will make the transition to adult services are represented.
 

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.

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.