If I could, I would…: Integrated Person-Centred Planning for Children, Young People and Families Receiving Palliative Care: Guidance and Toolkit – Rebecca Riley & Associates, UK

Written to support the NICE End of life care guidance for neonates children and young people, this framework and selection of practical tools provides guidance on how to implement person centred end of life care planning.  It delivers a comprehensive

Children’s Funeral Fund for England: (Briefing Paper Number CBP08610) – House of Commons Library

This Commons Library briefing paper deals with the establishment of a fund which will pay the fees charged by burial and cremation authorities, and some associated expenses, in respect of the funeral in England of a child under the age

Statutory funding for children’s hospice and palliative care charities in England 2018/19 – Together for Short Lives

Together for Short Lives survey of 27 children’s hospices in England shows that NHS and local council cuts are hitting lifeline care for seriously ill children. The report calls on NHS England to keep its promise to protect the Children’s

Clinical guidelines for major incidents and mass casualty events – NHS England

This guidance has been developed with the occasional trauma team in mind, for example, surgeons in a trauma unit who need to treat a deteriorating P2 patient, or a P1 patient who has been conveyed to the trauma unit, during

Talking About Dying: How To Begin Honest Conversations About What Lies Ahead – Royal College of Physicians

Royal College of Physicians  report that highlights and challenges professional reluctance to engage in conversations with patients about uncertainty, treatment ceilings, resuscitation status and death. It offers some ‘mythbusters’ to get physicians thinking and signposts to tools and educational resources

End of life care: strengthening choice: An inquiry report by the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care – All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care

Report that highlights five areas of particular concern, where many children and their families have limited access to: children’s palliative care out of hours and at weekends short breaks for respite age-appropriate palliative care and smooth transitions to adult services

A Guide to Children’s Palliative Care: Supporting babies, children and young people with life-limiting and life-threatening conditions and their families, 4th ed. – Together for Short Lives

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. This guide

Advance care planning in general practice – does policy match reality?: Findings from a Freedom of Information request to Clinical Commissioning Groups – Compassion in Dying

Compassion in Dying report that report that used Freedom of Information requests to reveal a mismatch between Clinical Commissioning Group policies and the reality faced by patients. Patients report doctors being ill-equipped to support them to plan ahead for their future care

National Cancer Patient Experience Survey 2017: National Results Summary – Quality Health

Report that finds for patient experience overall ratings continue to improve, with year on year increases in reported positive experience. Patients also reported more positively on areas including involvement in decisions about care and treatment, and being treated with dignity

Learning from deaths Guidance for NHS trusts on working with bereaved families and carers – NHS England

The learning from deaths national guidance is for NHS trusts on working with bereaved families and carers. It advises trusts on how they should support, communicate and engage with families following a death of someone in their care.  Included is information

CPG Hospices and Palliative Care: Inquiry Inequalities in access to hospice and palliative care – Cross Party Group Hospices and Palliative Care

Welsh Assembly Cross Party Group Hospices and Palliative Care report finding people with terminal illnesses and life-limiting conditions in Wales – especially dementia, heart failure and neurological conditions – face a range of barriers in accessing hospice and palliative care. 

Brain tumours (primary) and brain metastases in adults: NICE guideline [NG99] – NICE

This guideline covers diagnosing, monitoring and managing any type of primary brain tumour or brain metastases in people aged 16 or over. It aims to improve diagnosis and care, including standardising the care people have, how information and support are

An overview of the ELSA ‘End of Life’ data – Institute for Fiscal Studies

The English Longitudinal Study of Ageing (ELSA) is an invaluable source of information on the economic, social and health circumstances of the older population. This report provides an introduction to the ELSA EoL data, the quality of the data, the

Facing the Future: Standards for children in emergency care settings – Royal College of Paediatrics and Child Health

Facing the Future: Standards for children in emergency care settings document provides healthcare professionals and service planners with clear standards of care that are applicable to children in urgent and emergency care settings.  They are intended to be motivating, meaningful and measurable

End of life care in England: A briefing paper – Institute for Public Policy Research

Every year in England and Wales over 500,000 people die. For three-quarters of these people, death does not come suddenly. Instead, dying is a process that may take days, weeks or even years, involving a progressive decline in functioning and frequent interactions

Missed Opportunities: Advance Care Planning Report – Macmillan Cancer Support

Macmillan Cancer Support report looking at Advance Care Planning (ACP) – or Anticipatory Care Planning in Scotland.  A term used to describe conversations between a person and those involved in their care about their future wishes and care preferences. A person who is

Cancer workforce in England: A census of cancer, palliative and chemotherapy speciality nurses and support workers in England in 2017 – Macmillan Cancer Support

Macmillan Cancer Support report revealing broad variations in the ratio of patients to specialist cancer nurses and warns that such wide variation may mean that patients may not be getting access to badly-needed specialist care. While the workforce as a whole has

Cancer strategy: (Debate Pack Number CDP-2018-003) – House of Commons Library

This debate pack outlines the progress so far in implementing the Achieving World-class Cancer Outcomes: A Strategy For England 2015-2020: Report of the Independent Cancer Taskforce strategy and provides statistics on survival rates and the NHS cancer workforce. Finally, this paper pulls

Achieving World-class Cancer Outcomes: A Strategy For England 2015-2020: Report of the Independent Cancer Taskforce – Independent Cancer Taskforce

National Strategy for Cancer that emphasises the importance of earlier diagnosis and of living with and beyond cancer in delivering outcomes that matter to patients. The report recognises that no two patients are the same, either in their cancer or their healthand care needs.

NHS efficiency map: redesigning services: Enhanced supportive cancer care – Healthcare Financial Management Association

Case study of the transformation of existing palliative care services into enhanced supportive care (ESC). . The multi-disciplinary ESC team covered all patients’ needs. It had strong financial support and worked with the oncology team, so that patients could access the ESC team at any stage