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.   

Over the last two years ACT has actively lobbied to support and strengthen these networks across the UK to improve the outcomes for children and young people with life-limiting conditions.

This new Children’s Palliative Care National Network project will provide additional resources to further strengthen ACT’s ability to support these forums and aims to facilitate the delivery of Better Care: Better Lives at a local level. ACT wants to provide a national information hub to support networks, as well as offering practical support, and guidance on developing children’s palliative care strategies with clearly defined outcomes.  

Specifically ACT hopes to help local networks to:

•    Develop more effective children’s palliative care commissioning models.

•    Improve local needs assessment by mapping children’s palliative care services and those children, young people and families who use them.

•    Develop forums for sharing skills, knowledge and expertise.

•    Implement a total care pathway approach to delivering services to children and young people.

•    Enable statutory and voluntary services to work together to provide a comprehensive range of services for children and families.

•    Develop links with other existing networks that will help improve outcomes for life-limited children and young people, such as cancer or neonatal networks.

•    Encourage the involvement of local service users in service development.


A National Networks Information Hub is also part of the package. Once developed the Hub will be a largely web-based resource designed to enable best practice sharing between networks, and will house a range of information tools to help them develop. All networks will also be invited to publicise their own news, developments, and strategies via the Hub, both online and through ACT’s national newsletter for children’s palliative care professionals.  
 
Lizzie Chambers, ACT Chief Executive said: “These children’s palliative care networks are the prime vehicle through which Better Care: Better Lives can be implemented, and are well placed to make a real difference to the children, young people and families that desperately need help and support.”

“There are already some excellent and well-established networks that are ready to take up this challenge, but others need more help and support to make the most of this opportunity.  Working in partnership with the Department of Health, ACT wants to support networks to maximise the opportunities in the new children’s palliative care strategy for England and achieve a better quality of life and care for all life-limited children and their families.”

“ACT is a key member of the Better Care: Better Lives England-wide national children’s palliative care oversight group and will be an important partner to the Department of Health in providing feedback about the challenges of delivering improvements at the coalface.”

ACT’s Networks Project will be spearheaded by a new National Networks and Policy Officer.  Jane Houghton has now been appointed to this post and will be based in the North West of England.

Jane Houghton added: “As ACT’s new Networks and Policy Officer I hope to play a key role in working with all the organisations and staff who care for children who need palliative care, to help and advise on the setting up of palliative care networks, the implementation of the Better Care, Better Lives policy, and exchanging examples of good practice. In 12 months time I hope that better quality, equitable care for every child who needs palliative care as they truly deserve, is within sight, if not already a fact.”