Palliative care networks

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 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.

For more details contact: Julie Taylor, Network Chair, Dr Bindu Koodiyedath, Sarah Haynes, or Rachel Anderson.

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.

Membership of this collaborative is by invitation at present and meets every two to three months. Meetings happen virtually.

For more details contact: Helen Aspey and Suzanne Garbarino-Danson, network contact.

The Regional Paediatric Palliative Care Network in NI is a subgroup of the Child Health Partnership commissioning body. The network’s remit is to implement the Department of Health Strategy for Palliative and end of life care for children and young people 2016-2026. The network grew from a specialist interest group foundation and began its formal influencing in 2020. It is Chaired by Dr David Graham Consultant Paediatrician in the Southern Trust and managed by James Devlin from the Strategic Planning and Performance Group (DOH). Membership of the network ranges across the MDT and represents all Trusts and independent bodies with an interest in Childrens Palliative Care.

Key achievements of the network so far are:

• The implementation of the Palliative and Life Limited Service (PALLS) project. A PALLS Nurse (Currently working at ACP level) this project facilitates a Nursing role to be based in the Regional Centre for Sick Children with the aim of achieving earlier referral to palliative care services and increasing symptom management and advanced care planning. Associated with the post is a bed in the local Childrens Hospice which can be accessed to provide choice around place of care, facilitating care either in hospice, hospital or at home.
• Appointment of the first Consultant Post for Paediatric Palliative Care and for Medical Leads to be appointed in each Trust Area.
• The implementation of a Regional Antenatal Pathway, improving access to antenatal and perinatal palliative care. The pathway has been embedded well into practice through a service improvement project lead by Dr Mairead McGinn in partnership with fetal medicine in the Belfast Trust.
• A rolling education programme facilitated by ECHO.

Ongoing Work of the Network:

• Scoping how we embed the regional Antenatal pathway with other fetal medicine site in NI
• Looking at sustainable 24/7 cover for end of life care

Contact James Devlin, and David Graham, network chairs.

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.

Contact Lynn Grayson, network chair.

Contact Anna Oddy, and Lydia Bowen network chairs.

Contact Jan Sutherland Oakes, network chair or Anna Bass.

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: Danielle Harley, administrator or Elizabeth Anne Cunningham or Kate McCusker, network co-chairs.

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.

For more details contact: Sarah Measures, Chair, & Sian Payne, Chair.

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.

For more details contact: Dr Timothy Warlow, Clinical Lead and Chair or Julie Gumbrell, Network Co-ordinator.

This network meets quarterly and membership is open to any interested practitioners working in the local area.

For more details contact: Thomas Beaumont, Network Co-ordinator, Katie Stevens, Kirsty Galvin, C0-Chairs.

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: Kim Duckworth, Lisa Pullen, network contacts.

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.

For more details contact:  Alice Britton, Network Manager or Christine Mott, Clinical Lead/Chair.

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, Pat O’Meara, Rebecca McDonald, network chairs.

The Humber and North Yorkshire (HNY) Children and Young People’s (CYP) Palliative and End of Life Care (PEoLC) Programme is part of the HNY Integrated Care Board (ICB) “All Age” PEoLC Centre of Excellence, and the Children’s Transformational Programme.

There are many providers already delivering quality care for babies, children, young people and their families experiencing PEoLC services in the HNY ICB footprint. However, there are inequalities, often intensified by challenges relating to demographics and geography, such as age, diagnosis, location of provision (coastal, rural, inner city), ethnicity and deprivation.

We are a multi-agency group, bringing together all stakeholders from ICB, Primary and Secondary Care, Social Care, Education, Local Authorities and the Voluntary Sector, along with Young People and Parent Representatives from within the HNY ICB Footprint.  The priority for HNY ICB, to support system-wide development and to improve outcomes for babies, children and young people (BCYP) across the area.

Our vision is that “Every child and young person with palliative and end of life care needs, and their family, will receive personalised, coordinated care and support, that enhances their quality of life, from the point of identification throughout their care journey and beyond. Care and support will be provided by a competent, confident, resilient and supported workforce, in partnership with the child, young person and their family, with a focus on empowering the family to make informed and joint decisions about how, when and where their care is delivered.”

Our strategy, and delivery plan, sets out how, by working together as a system, with commissioners, providers, families, and wider networks, we can improve the  delivery of care to babies, children and young people who have a palliative illness. It also sets out how we can develop and increase the support we give to those caring for them.

For more details contact: Michelle Rollinson, Clinical Lead CYP PEoLC, and Joint Senior Responsible Officer All Age PEoLC, for Humber and North Yorkshire ICB

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.

For more details contact: Dr AK Anderson, Tracie Lewin-Taylor, network co-chairs.