ACT - The Association for Children's Palliative Care

ACT has announced the winners and runners up in their Champions Awards scheme designed to recognise excellence in the delivery of services to life-limited children, young people and their families in England.

The charity asked 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’. ACT knows how much parents and carers value the care provided by so many individuals, teams and organisations to their children and wanted this hard work to be acknowledged.

ACT has welcomed the announcement by Minister for Health, Edwina Hart of funding of £8 million over the next three years to further improve both children’s and adult palliative care across Wales. 

This new investment was announced on 3 July 2008, and will be made up of £1m allocated to palliative care across Wales in 2008-09, increasing to £2m in 2009-10 and then £5m in 2010-11. We understand that this funding will be invested in both NHS and voluntary sector providers of palliative care.  The Palliative Care Planning Group Report was also launched – and ACT along with other partners, including Children’s Hospices UK and Help the Hospices fed into consultation process leading to the report earlier this year. 

ACT is pleased to note that many of our recommendations for children’s palliative care have been echoed in its findings, including a move to better collect and collate data and other key information about children with life-limiting conditions to enable better planning and commissioning of services.

•    New survey reveals poor understanding of PCT funding allocations
•    Not one English PCT can quantify spend on services for disabled children or children with palliative care needs
•    Campaigners call for action from Ministers and PCT leaders

In the week that professionals debate the future of the health service at the NHS Confederation Conference, the Every Disabled Child Matters campaign (EDCM) working with three major UK charities (ACT (Association for Children’s Palliative Care), Children’s Hospices UK and Whizz-Kidz) is revealing survey results showing that not one Primary Care Trust (PCT) in England is able to specify how much funding they will be spending on essential health services for disabled children.

This is despite disabled children being a local priority group in this year’s NHS Operating Framework, coupled with repeated assurances from Ministers that PCTs have additional baseline funding for disabled children and children with palliative care needs, and that they are expected to match local authority children’s services spending commitments.

Scotland’s first dedicated Nurse Consultant posts for children’s and young people’s palliative care were formally announced at the ACT and SCYPPCN (Scottish Children’s and Young People’s Palliative Care Network) Conference in Edinburgh last week (3 June 2008).  

Speaking at the Conference three of the four new Nurse Consultant post holders unveiled their new vision for children’s and young people’s palliative care, and said they wanted to ensure that children and their families are at the heart of policy and practice developments across Scotland.

These four new Nurse Consultant posts have been funded for two years by the Scottish Government Health Directorates and will play a major role in helping to raise awareness of the need for dedicated children’s palliative care services in Scotland.  One of the first challenges will be helping to ‘make the case’ for this sector by more accurately mapping the extent and need for these services across Scotland. 

UK charity ACT (Association for Children’s Palliative Care) has launched new guidance on sexuality, relationships and sexual health for all those working with young people with life-limiting health conditions, in a bid to open up a taboo subject and to better support these young people to have the opportunity to experience relationships and explore their sexuality, in a safe, supportive and empathetic environment.

In developing this guidance ACT is urging professionals and practitioners working in the field to develop policies, practice and training around relationships and sexual health, and also wants to give parents and carers the confidence, support and resources to help young people explore their sexuality.

The new guidance, Let's Talk About Sex, Let's Talk About You and Me: Relationships, sexual health and sexuality guidance for those working with young people with life-threatening conditions and their families is being launched at ACT’s National Children’s Palliative Care Conference in London on Monday 9 June 2008.