Children’s palliative care networks across the UK work in different ways, but all bring together professionals and organisations from across the children’s palliative care sector, and other stakeholders, to work together in a co-ordinated way, cutting across organisational boundaries to share best practice and plan services effectively.
To improve and enhance understanding of the needs of children with life-limiting conditions, local networks – jointly developed with local authorities and children’s trusts – can be an effective model of service provision. Regional networks drawing together local networks can provide strategic leadership to enable services to be operationally relevant and efficient.
As part of its overall strategy, Together for Short Lives is committed to ensuring high standard, equitable care for all children and families through supporting children’s palliative care networks and by hosting regular network summit meetings.
The following networks operate around the United Kingdom.
East of England Children’s Palliative Care Network
This network covers Bedfordshire, Cambridgeshire, Essex, Hertfordshire, Luton, Norfolk and Suffolk. Membership is by invitation but membership of the local groups is open to interested practitioners working in the local area.
For more details contact: Sonya O’Leary, network chair.
The East Midlands Children’s and Young People’s Palliative Care Network
The East Midlands network covers Nottinghamshire, Derbyshire, Leicestershire and most of Lincolnshire and membership is open to any interested practitioners working in the local area.
The network formed in 2004 and has grown and flourished since then and is now a well-supported, active network bringing together representatives from a wide variety of palliative care services from different sectors across the region. The network meets quarterly and helps to:
- Share clinical initiatives.
- Develop joint research and guidelines to influence future practice and discuss specific clinical issues relating to care.
- Facilitate the involvement and dialogue between providers and commissioners and feed into national networks relating to children’s palliative care.
- Influence commissioning of children and young people’s palliative care across the East Midlands area.
- Encourage the use of Together for Short Lives’ integrated care pathways to ensure equity of provision across the region.
The London Children’s Palliative Care Network
The London Children’s Palliative Care Network (LCPCN) was established in June 2007, following the Department of Health’s Independent Review of Children’s Palliative Care
Membership of this network is open to interested practitioners working London. The network aims to expand its membership to include leads for workforce development, research and education.
LCPCN aims to ensure a more integrated approach to children’s palliative care, involving multi-disciplinary agencies from both the statutory and voluntary sectors, including social care, education and children’s hospice services.
For more details contact: Amy Volans, network chair.
North East England and North Cumbria Children and Young People's Collaborative
Northern Ireland Children's Palliative Care Network
The Northwest Regional Children and Young People’s Palliative Care Network
The Northwest Regional Children and Young People’s Palliative Care Network brings together Children and Young People’s Palliative Care Zonal Networks from Greater Manchester and Cumbria and Lancashire, plus Merseyside and Cheshire, to represent the needs of children and young people across the entire Northwest region.
The main focus of the work is children and young people from 0 to 19 years and includes both oncology and non-oncology diagnoses. However, the scope of its work also includes antenatal diagnosis and young people aged 19 and over in transition to adult services.
You can get in touch by contacting the network chair, Vanessa Holme.
Cumbria & Lancashire Children's Palliative Care Network
Cheshire and Merseyside Zonal of NW
The Scottish Children’s and Young People’s Palliative Care Network
The Scottish Children’s and Young People’s Palliative Care Network is open to any interested practitioners working in Scotland (such as Children Community Nurses, Commissioners of Children’s Services, Education workers, Paediatric Consultants with special interest in palliative care, those working with children and young people with complex needs or disabilities), and meets quarterly at locations throughout the country.
The network is a national multi-agency group established to work together to ensure that palliative care for children and young people and their families is delivered in a seamless and integrated way across Scotland. The network believes that every child or young person in Scotland with a life-limiting condition, regardless of race, religion, age or where they live, should have access to the sustainable, holistic, family-centred and high-quality palliative care and support that they need. Its vision is that parents should receive:
- Choice of place of care – home, hospital, or hospice.
- Choice of place of death – home, hospice or hospital.
- Choice in bereavement care and support.
Thames Valley Children's Palliative Care Network
The Thames Valley Children’s Palliative Care Network network covers the Thames Valley Area, Oxfordshire, Buckinghamshire, Berkshire and Wiltshire and meets quarterly. Membership is open to any interested practitioners working in the local area.
Wessex Children and Young Adults Palliative Care Network
The Wessex Children’s Palliative Care Network network meets quarterly and membership is open to any interested practitioners working in the local area.
This network covers Southampton Hampshire, Isle of Wight and Portsmouth and is currently exploring links with colleagues in the Channel Islands.
The Kent & Medway Children and Young People's Paediatric Palliative Care Network
The South West Children’s Palliative Care Commissioner’s and Practitioner’s Networks
The Children’s Palliative Care Network for the South West has been established to promote equity and to enhance the quality of the experience for children and young people requiring palliative care and their families, and to empower and support anyone working in the field of children’s palliative care in the South West of England.
The network aims to:
- share and disseminate best practice
- develop the evidence base for children and young people’s palliative care through supporting research and disseminating research outcomes
- promote effective communication and collaboration between the agencies and professionals providing children and young people’s palliative care in all settings
- advocate on behalf of children and young people requiring palliative care and their families, ensuring user’s views are listened to
- raise awareness of children and young people’s palliative care, strategically and politically, at all levels
- develop supportive networks among colleagues working within children and young people’s palliative care services
- support providers of children and young people’s palliative care to deliver recommended models of care and to minimise disparity across the region
- quantify the level of need for palliative care for children and young people across the South West.
West Midlands Paediatric Palliative Care Network
The West Midlands Paediatric Palliative Care Network covers Birmingham and the Black Country, Staffordshire, Herefordshire, Worcestershire, Warwickshire, and Shropshire. It covers palliative and bereavement care services from antenatal periods up to young adults.
The network’s vision is to provide a multidisciplinary, collaborative and supportive Network that, through service development, pathways, education and research, ensures accessible, equitable and gold-standard palliative care to all families. It continues to build on the objectives and work of the voluntary network, with aims to increase awareness and understanding of palliative care, foster collaboration, identify and help address gaps in service provision, and provide a supportive space for those working in palliative care.
The network hosts a quarterly paediatric palliative care forum that is open to anyone working or interested in palliative or bereavement services in the West Midlands. There are also a number of working groups to help move forward work in specific priority areas, with interested members from across the region.
The network has previously produced the West Midlands Toolkit which provides a comprehensive range of documents and tools for children’s palliative care.
All Wales Managed Clinical Network
The Network provides an all Wales tertiary service, as well as local secondary support in the care of children with any life-shortening condition, malignant or otherwise. It is administratively based at the Children’s Hospital in Cardiff, but individual members of the Network have their base in each of the Health Boards of the Principality, as well as the children’s hospices that serve Wales. Its core members are the doctors, nurses and therapists delivering clinical care and other professionals are co-opted as is appropriate.
The aim of the Network is to support children and their families with life-shortening conditions by facilitating the delivery of appropriate specialist care in whatever clinical environment the child is located. In practice, care is delivered through:
- Specialist palliative care clinics in Boards and selected special schools across the Principality.
- Medical Support (Consultant or GP led as is necessary) for children in Ty Hafan and Ty Gobaith children’s hospices.
- Local support through local lead in children’s palliative care in each of the Health Boards in Wales.
- Telephone advice as needed.
- Dissemination of Wales wide guidelines and other resources.
- Domiciliary visits by doctors and nurses in the Network.
- Ward visits as needed.
The Network meets twice a year, and tertiary multi-disciplinary team meetings are held weekly at the Children’s Hospital. The subgroup meet regularly to plan education and training, and to work on target activities e.g. advanced care planning, nurse verification and toolkit development.
The Welsh Managed Clinical Network in Paediatric Palliative Medicine was originally formed following the Children and Young People Specialist Services Report in 2007. Since then, it has grown and, together with the All Wales Paediatric Palliative Care Forum, was able to give evidence to the Sugar Report in 2010. Following that report, the Network was given the further task of taking forward the recommendations of the Sugar Report in respect of children’s palliative care services in Wales and was expanded to include local lead teams in most of the Boards in Wales.
This forum invites membership from the North Wales and South Wales networks.
The South West London and Surrey Paediatric Palliative Care Network
The Surrey and South West London paediatric palliative care network (SPAN) is a clinical network which seeks to support and provide the delivery of collaborative, equitable, high quality palliative and end of life care services for CYP across the region through supporting service providers and commissioners. The network will support the delivery of best practice by suitably trained staff whom are able to address their emotional, psychological, medical, social and practical needs of patients and families and meet the relevant quality standards.