Guidance and Resources

Ambitions for palliative and end of life care, based on the collective experience of the National Palliative and End of Life Care Partnership and the analysis of the many reviews ands reports in this area, presenting a framework for local action.

The APPM Master Formulary 2020 includes only those drugs, routes and indications generally used in children’s palliative care in Great Britain. The drugs are presented in alphabetical order by generic name.

The British National Formulary for Children is the standard UK paediatric reference for prescribing and pharmacology. Published by NICE.

Basic Symptom Control in Paediatric Palliative Care is a key clinical tool used by children’s palliative care doctors and nurses across the world. It is the only resource of its kind that provides comprehensive guidelines for treating a wide range of symptoms experienced by children with life-limiting or complex health conditions.

The ReSPECT compatible version of the Child and Young Person’s Advance Care Plan document for recording the outcome of advance planning discussions. This version has been approved by NICE Guidelines and endorsed by the MCN.

A set of principles for use by providers and commissioners, across the whole healthcare system wherever a child or young person is seen. The aim is to improve the health outcomes and experiences for children and young people (CYP.)

This NICE guideline covers the planning and management of end of life and palliative care in for infants, children and young people (aged 0–17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.

The EAPC lobbies and actively engages with EU policy-makers and other stakeholder to advocate, anticipate and proactively shape EU health and research policies on palliative care issues. The EAPC provides a forum for all of those either working, or with an interest in palliative care throughout Europe and beyond. Members are engaged in palliative care across the lifespan from a range of perspectives: specialist and generalist clinical practice, education, professional groups, policy and research. The EAPC lobbies and advocates for the development of palliative care through its activities and through its work in developing the practice of palliative care.

The Guide to Children’s Palliative Care is an essential resource for all those with an interest in planning, commissioning and delivering services and care for babies, children and young people with life-limiting and life-threatening conditions, and their families.

The Guide has been endorsed by The Royal College of Paediatrics and Child Health, the International Children’s Palliative Care Network and the European Association of Palliative Care and can be downloaded as a free resource from the Together for Short Lives website.

Hospice UK is the national charity for hospice care, working closely with hospices in the UK to support their vital work and to create a stronger voice for hospice care. Hospice UK offers a wide range of support programmes covering various aspects of hospice care delivery - from clinical leadership and guidance on income generation, to support with staff recruitment and governance.

The ICPCN‘s mission is to achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide, by raising awareness of children’s palliative care, lobbying for the global development of children’s palliative care services, and sharing expertise, skills and knowledge.

This resource is designed to support CCGs and local authorities in England to effectively commission palliative care for children and young people. It also helps health and wellbeing boards to understand their role in the commissioning process.

This Annual Report provides details of the work carried out by the East of England Children’s Palliative Care Managed Clinical Network (MCN) during 2018/19.

This guidance document outlines the purpose and goal of the MDT meeting, preparation and meeting follow up. This also contains guidance for the ‘round robin’ emails.

The Change Model is a framework for any project or programme that is seeking to achieve transformational, sustainable change. The model, originally developed in 2012, provides a useful organising framework for sustainable change and transformation that delivers real benefits for patients and the public. It was created to support health and care to adopt a shared approach to leading change and transformation.

Sets out the outcomes and corresponding indicators used to hold the NHS Commissioning Board to account for improvements in health outcomes.

This is an e-learning course and will be useful to all healthcare professionals who work with children and young adults. This includes paediatricians in all training and career grades, paediatric advanced nursing practitioners, GPs and GP trainees, ED staff and community healthcare workers. The sessions include self-assessment quizzes and a variety of interactive exercises.

Palliativedrugs.com provides independent information for health professionals about drugs used in palliative care. It includes unauthorised indications and routes, and details about the administration of multiple drugs by continuous subcutaneous infusion.

The Public Health Outcomes Framework sets the context for the health system, from local to national level. The framework sets out the broad range of opportunities to improve and protect health across the life course and to reduce inequalities in health.

Founded in 1996 and now with over 19,000 members across the world, the RCPCH has a major role in postgraduate medical education, professional standards, research and policy. The RCPCH mission is to transform child health through knowledge, innovation and expertise.

Good symptom management planning has been shown to reduce the need for out of hours support as practitioners have considered in advance and prepared families and other carers how a child’s symptoms may progress and have a plan in place to deal with them. This is particularly important if the child is cared for in the community

Symptom Management Plans (SMPs) are individualised plans written specifically for each child. Attached is an SMP model which has been designed to assist practitioners during End of Life Care.

Together for Short Lives is the UK charity for children with life-threatening and life-limiting conditions and all those who support them. The website provides help for families, services and professionals including details of events and training, resources, and care pathways.

The library at EACH is a unique collection of over 3,000 resources specialising in all aspects of caring for children and their families with severe disabilities, complex health needs and life-threatening conditions. The library aims to support all staff groups working within children's hospices with resources for nurses, healthcare assistants, social workers, medical staff, counsellors, music therapists, allied health professionals, fundraisers, management and volunteer managers.

NHS library and knowledge services in the East of England work together as a network with other healthcare libraries to provide free access to books, journals and online resources to all NHS staff and students.