ACT - The Association for Children's Palliative Care

Living and Dying Well, the new national action plan for palliative care and end of life care in Scotland (published by NHS Scotland) has been launched by Health Secretary Nicola Sturgeon today (2 October 2008).

ACT, the UK children’s palliative care charity, although disappointed that the action plan does not directly highlight nor recognise the specific needs of children and young people with life-limiting or life-threatening conditions, welcomes the plan’s commitment to ensure that good palliative care and end of life care is available to all patients and families who need it.   ACT says that there are currently about 1200 children in Scotland will not live to reach adulthood.

Although children‘s needs have not been highlighted within the plan, ACT is heartened that the action plan has identified a range of further work that will need to take place in the next two years in order to develop an accessible and cohesive approach to palliative and end of life care, and this includes developing recommendations on appropriate service configurations to meet the needs of adolescents and young people with palliative and end of life care needs.

You can access the Scottish Government Press Release about the action plan here http://www.scotland.gov.uk/News/Releases/2008/10/02113708

You can also download a PDF of the action plan here: http://www.scotland.gov.uk/Publications/2008/10/01091608/0

ACT has welcomed the Audit Review of Palliative Care in Scotland and is encouraged to see that some information about children’s palliative care services had been included, however is disappointed that its primary focus had been on adult palliative care. Information about two of Scotland’s hospices for children, run by CHAS (Children’s Hospice Association Scotland) were included, however the diverse range of non-hospice based services were not audited or included and the Review process has failed to acknowledge the gaps in services for children, young people and their families.

ACT hopes that the forthcoming National Action Plan for Scotland, due to be published by the Scottish Government, in October 2008, will provide an opportunity to redress this imbalance, and a forum to highlight the urgent need for appropriate services for children, young people and their families.  ACT will be working with the Scottish Children’s Palliative Care Network to influence the plan; lobbying to raise awareness of the needs of life-limited children, to highlight the differences between children’s and adult services, and to raise awareness of the need to plan for those young people who need to make the transition from children’s to adult services.  

Lizzie Chambers, Chief Executive of ACT said: “The new Action Plan for Scotland is a real opportunity to move children’s palliative care to the top of agenda, and develop a national strategy for children and young people with life-liming conditions and their families.  We must ensure that these children in Scotland have the same opportunities, support, and policy framework as those life-limited children who live in Wales, England and Northern Ireland.”  

ACT has launched a new National Networks Project designed to support the roll-out of the Government’s first Children’s Palliative Care Strategy for England, Better Care: Better Lives.

Working alongside the Department of Health, ACT will play a key role in supporting and informing children’s palliative care networks, and has just appointed a dedicated National Networks and Policy Officer to help kick-start the project. The development of a web-based “Network’s Hub” to support this work is also underway.

In some areas dedicated children’s palliative care multi-agency networks already play a key role in improving the outcomes and experiences of children and young people who have complex health conditions or disabilities that will shorten their lives. One of the major recommendations of Better Care: Better Lives is to reinforce the value and strengthen the role of these networks.  The aim of these regional networks is to bring together health and local authority commissioners with all the voluntary and statutory agencies that deliver services to children and their families. ACT believes that these networks should be locally owned and driven by leads in Strategic Health Authorities.   

Following the government’s announcement today of £286m for adult end-of-life care, charities representing children’s palliative care services, life-limited children and their families are asking the government why it is still refusing to spell out the funding for the children’s palliative care strategy launched in February.

At the same time, charities welcomed the government’s acknowledgment that more children with life-limiting conditions are living longer and, therefore, the transition from children’s to adult care should be carefully considered by commissioners in planning end-of-life care services.

Lizzie Chambers, Chief Executive of the Association for Children’s Palliative Care (ACT), said:

“Today’s welcome announcement complements the children’s palliative care strategy announced in February. Yet although PCTs now know what new money they are getting to improve adult services, they are still in the dark about the extra funding they have been given for children. There seems to be one rule for adults and another for children. We hope the forthcoming Child Health Strategy will clear this funding fog.”