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: Tracy Rennie, 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.
- Promotes practice which meets standards in the NSF for Children and Young People, Every Child Matters and other national policies
For more details contact: Amanda Whateley, network chair.
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 by invitation but membership of local groups is open to interested practitioners working in local areas in the North West, North Central, North East, South East and South West sectors of 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: Dr Amy Volans, network chair.
North East England Children and Young People's Palliative Care network
This network covers Northumberland, Tyne and Wear, Cleveland and Durham.
Membership of this network is by invitation at present and meets every two to three months.
For more details contact: Katie Rigg, network contact.
This network meets on a twice yearly basis and membership is open to interested practitioners working in the local area.
The network covers Northern Wales and its providers from Cheshire and Merseyside
For more details contact: Dr Madalitso Kubwalo, network chair.
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.
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.
For more details contact: Neil Healy, network chair.
South Central (North)
The South Central (North) 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.
For more details contact: Andrea Lambert, network chair.
South Central (South)
The South Central (South) 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.
For more details contact: Dr Michelle Koh, network chair.
South East Coast (Kent and Medway)
The South West Children’s Palliative Care Commissioner’s and Practitioner’s Networks
There are two networks working across the South West – one for commissioners and another for practitioners, which is still being developed. Membership of the practitioners network is open to any interested practitioners working in the South West.
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.
For more details contact: Lisa Pullen, network contact.
The West Midlands Children and Young People’s Paediatric Palliative Care Network
This network meets quarterly and covers Birmingham and the Black Country, Shropshire, Staffordshire, Warwickshire, Herefordshire and Worcestershire. Membership is open to any interested practitioners working in the local area.
The predecessor to this group was hosted by the Pan Birmingham Palliative Care Network and was tasked by the West Midlands Paediatric Oncology Supra Network Group to produce a model and recommendations for paediatric palliative care across the West Midlands. This work, based on a regional gap analysis, has now been completed, and the focus of the group has changed to strategic implementation of the objectives set out in the Department of Health’s ‘Better Care: Better Lives’ publication, in order to address gaps identified in the analysis.
The objectives of the group are to:
- advocate for children and young people with life-limiting conditions and their families, and encourage the involvement of local service users in service development
- collect data about palliative care needs and provision in the West Midlands Region, including collection of the Paediatric Palliative Care Minimum Dataset and progress made in addressing gaps identified in the recent gap analysis
- inform commissioning strategy for the development of paediatric palliative care services with reference to regional data, national best practice standards and to documents and guidance listed below. This will be delivered via membership of the Regional Commissioning Group
- improve care pathways across statutory and voluntary sectors, including transition of young people into adult services, with reference to Together for Short Lives care pathways standards
- facilitate commissioner and provider cooperation within the PCT clusters identified in the regional gap analysis
- maintain the link with the West Midlands Paediatric Oncology Expert Advisory Group and develop links with other relevant groups such as the neonatal networks
- work towards the establishment of a regional managed clinical network for paediatric palliative care
- contribute to training and workforce initiatives
- raise public and professional awareness of paediatric palliative care
The network produced the West Midlands Toolkit which provides a comprehensive range of documents and tools for children’s palliative care.
For more details contact: Dr Sarah Mitchell, network chair
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.
For more details contact: Dr Richard Hain, network chair.
The Yorkshire and Humberside Children’s Palliative Care Network
This network meets quarterly and membership is open to any interested practitioners working in the local area.
It covers West, North and South Yorkshire and Humberside, which includes a part of Lincolnshire
The Yorkshire and Humberside Children’s Palliative Care Network has been established to enhance the quality of the experience of 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 Yorkshire and Humberside.
Its aims and objectives are to:
- raise awareness of, and advocate for, the needs of children and their families with life-limiting conditions
- share and disseminate good practice, knowledge and research
- improve co-ordination and communication between agencies and service providers
- build a central evidence base of services
- understand the variations in care and the different ways families’ needs might be met, thereby providing more equitable provision while retaining flexibility
- provide a forum for professionals to share experiences and give each other support
- develop regional care pathways, including transition from children’s to adult services
- establish links with other existing networks that work with children with life-limiting conditions such as cancer and neonatal networks
For more details contact: Sue Picton, network chair.