ACT - The Association for Children's Palliative Care

Thousands of children with life-limiting conditions are living in poverty yet their parents may be saving the state millions of pounds a year, according to MPs.

The MPs said today: “Many parents of severely disabled and terminally ill children are not able to work because of their caring responsibilities; in many cases, if this care were to be provided by the state it would cost several times the amount paid to the families in benefits.”

This is one conclusion of a major report on child poverty published by the Work & Pensions Committee. MPs say the government needs to make greater efforts to end child poverty, particularly for groups most at risk, which include disabled children and their families. 

The children’s palliative care sector hopes to benefit from new government funding for short breaks for disabled children. To help them do so, ACT (Association for Children’s Palliative Care) and ACH (Association of Children’s Hospices) held a workshop on Tuesday 27 February for over 30 children's palliative care services across England.

Children's palliative care providers already offer a range of much-needed short breaks. They are now looking to offer their services to the 21 local authorities that bid successfully to be “pathfinders” for a £370 million DCSF scheme to offer short breaks to severely disabled children and their families. The programme will be rolled out across England in 2009-10.

The Kosh and leading children’s charity ACT launch new film by young people with life-limiting conditions

Film-makers the Kosh and UK children’s palliative care charity ACT have launched a new groundbreaking DVD resource called Talk About Change made by young people with life-limiting conditions. Talk About Change, funded by BBC Children in Need, aims to show the reality of making the transition from childhood to adulthood knowing that you have a life-limiting condition.

The new film was officially launched at Richmond House, Whitehall, London on 19th February 2008. It was a joint event where Ivan Lewis, Minister for Care Services, launched the first national strategy for children’s palliative care – Better Care: Better Lives. The strategy responds to the needs of children, young people and families living with life-limiting conditions and sets the agenda for improving the quality of services available to them.  

CHILDREN’S PALLIATIVE CARE ALLIANCE - WELCOME FOR NEW STRATEGY TO HELP LIFE-LIMITED CHILDREN

•    Children’s palliative care ‘test case’ for new, devolved NHS

•    £20 million for children’s hospice services; extra for PCTs unclear

•    Minister wants ‘major changes’ within 18 months

The Children’s Palliative Care Alliance, a consortium of leading children’s and healthcare charities, has welcomed today’s government strategy, ‘Better Care: Better Lives’, for improving the care and support given to children in England with life-limiting or life-threatening condition and their families.

Speaking at today’s launch, Care Services Minister Ivan Lewis described the provision of support for children and families with palliative care needs as “The test of an effective, modern, compassionate health and social care system”. He added that if within 18 months major changes hadn’t happened, “then I think we would be worried”.

Are you a parent or family member providing care for a child with a life-threatening or life-limiting condition? Do you deliver or support children’s palliative care services for the under 25s? Do you want to learn new skills to help support children and young people – but can’t afford the training?

National children’s palliative care charity ACT (Association for Children’s Palliative Care) has launched (14 February 2008) a new training grants programme to help families, carers and professionals working in the field to help enhance their skills, knowledge and competencies.

The ACT Children’s Palliative Care Training Grant Programme, funded by The True Colours Trust, aims to help support best practice and specialist knowledge in caring for children with life-limiting conditions by providing small one-off grants of up to £250 to individuals and agencies who wouldn’t otherwise be able to access specialist training.