Consultation on Health and Social Care Statistical Products

This directory of intelligence and guidance supports the data in the profile, arranged by themes:

  • policy and guidance
  • place of care
  • conditions
  • inequalities
  • commissioning and contracting
  • data and intelligence
  • education and training

This information is updated quarterly.

The National End of Life Care Intelligence Network (NEoLCIN) is not responsible for the contents or reliability of these links and does not necessarily endorse the content expressed within them. For enquiries or feedback relating to the palliative and end of life care pages, email neolcin@dhsc.gov.uk

Policy and guidance

Recent policy and clinical guidance for professionals working in palliative and end of life care.

Age UK (2019) Policy Position Paper. End of life care (England)

Association of Chartered Physiotherapists in Oncology in Palliative Care (2022) Universal principles for advance care planning (ACP)

Care Quality Commission (2021) State of care 2020/21

Department for Levelling Up, Housing and Communities (2020) Public health funerals: good practice guidance

Department of Health and Social Care (2008) End of life care strategy: promoting high quality care for adults at the end of their life

Department of Health and Social Care (2015) Improvements to care in the last days and hours of life

Department of Health and Social Care (2018) NHS continuing healthcare fast-track pathway tool

Department of Health and Social Care (2015) One chance to get it right: one year on report

Department of Health and Social Care (2016) Our commitment to you for end of life care: The government response to the review of choice in end of life care

Department of Health and Social Care (2023) Major conditions strategy: case for change and our strategic framework

Department for Works and Pensions (2023) Special rules for end of life care: healthcare professionals resources

General Medical Council (2022) Treatment and care towards the end of life: Good practice in decision making

Hospice UK (2022) Care after death. Guide for staff responsible for care after death

Hospice UK Rehabilitative palliative care

Hospice UK Where to get bereavement support

Institute for Public Policy Research (2021) The state of end of life care: Building back better after Covid-19

King’s Health Partners (2018) Palliative Care Clinical Academic Group outcomes book

National Bereavement Alliance and Hospice UK (2019) Care after caring

NHS (2019) The NHS Long term plan

NHS Digital (2015) Palliative care co-ordination: core content (SCCI1580)

NHS England Palliative and end of life care

NHS England Personal health budgets for palliative and end of life care

NHS England (2016) New care models: vanguards – developing a blueprint for the future of NHS and care services

NHS England (2017) Palliative care currency 

NHS England (2019) Universal personalised care: Implementing the comprehensive model

NHS England (2022) Palliative and end of life care: Statutory guidance for integrated care boards (ICBs)

NHS England (2022) Universal principles for advance care planning (ACP)

NHS England & NHS Improving Quality (2014) NHS England's commitment for carers

NHS England (2023) Specialist palliative and end of life care services: Adult specification

NHS Improving Quality (2014) Lessons learned implementing an Electronic Palliative Care Co-ordination System (EPaCCS)

National Institute for Health and Care Excellence (2017) Care of dying adults in the last days of life [QS144]

National Institute for Health and Care Excellence (2019) End of life care for adults in the last year of life: service delivery [NG142] 

National Institute for Health and Care Excellence (NICE) (2019) End of life care for infants, children and young people with life-limiting conditions: planning and management (NG61)

National Palliative and End of Life Care Partnership (2021) Ambitions for palliative and end of life: A national framework for local action 2021-2026

Parliamentary and Health Service Ombudsman (2015) Dying without dignity. Investigations by the parliamentary and health service ombudsman into complaints about end of life care

Public Health England, National End of Life Care Intelligence Network (2016) Electronic Palliative Care Co-ordination Systems (EPaCCS) national data project

Public Health England, National End of Life Care Intelligence Network & NHS Improving Quality (2014) Electronic Palliative Care Co-ordination Systems (EPaCCS) in England 

Royal College of General Practitioners and Marie Curie UK The Daffodil Standards

The Choice in End of Life Care Programme Board (2015) What’s important to me. A review of choice in end of life care

The Leadership Alliance for the Care of Dying People (2014) One chance to get it right - improving people’s experience of care in the last few days and hours of life (Liverpool Care Pathway Review)

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Place of care

Includes policy and guidance on different care settings for palliative and end of life care: care homes, communities, hospice, hospital and social care.

Care homes

Marie Curie Palliative Care Research Centre, Cardiff University, Hospice UK and Public Health England (2017) Results of a national survey of support to adult care homes in England: A specialist palliative care provider perspective

NHS (2016) The framework for enhanced health in care homes

Public Health England, National End of Life Care Intelligence Network (2017) The role of care homes in end of life care

Office for National Statistics Care homes and estimating the self-funding population, England: 2021-2022

Social Care Institute for Excellence (SCIE) (2017) End of life care in a care home

Communities

General Medical Council Treatment and care towards the end of life: good practice in decision making

Local Government Association (2020)  End of Life care Guide for councils

Marie Curie Compassionate communities. A civic and public health approach to end of life care

Murray Hall Community Trust and The National Council for Palliative Care Dying Matters (2013) An overview of compassionate communities in England

NIHR Compassionate Communities: A public health approach to palliative and end of life care - PEOLC13

The National Council for Palliative Care (2016) Each community is prepared to help: community development in end of life care – guidance on ambition six

Hospice

CQC (2018) The state of hospice services in England 2014 to 2017

Hospice UK Publications and Resources

NHS England (2017) Dementia friendly hospices – embedding a sustainable model to develop the skills, knowledge and confidence of Hospice staff across Yorkshire and the Humber

Nuffield Trust and Hospice UK (2022) Support at the end of life. The role of hospice services across the UK

Hospital

NHS England (2015) Transforming end of life care in acute hospitals: the route to success ‘how to’ guide

Royal College of Physicians (2016) End of life care audit – dying in hospital

Out of hours

Marie Curie (2022) Better end of life care 2022

Primary care

Macmillan Cancer Support (2020) Supporting QI activity in end of life care

Social care

Association of Palliative Care Social Workers (2016) The role of social workers in palliative, end of life and bereavement care

Care Quality Commission (2018) The state of adult social care services 2014 to 2017

Social Care Institute for Excellence (SCIE) (2018) Growing innovative models of health, care and support for adults

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Conditions

Includes policy, guidance and intelligence on end of life care for different conditions.

General

Office for Health Improvements and Disparities (ONS) (2023) Palliative and end of life care factsheets: patterns of care, England 2021

Cancer

Cancer Research UK Cancer mortality statistics

Cancer Research UK Dying with cancer

Independent Cancer Taskforce (2015) Achieving world-class cancer outcomes. A strategy for England 2015-2020

National Cancer Registration and Analysis Service (2015) Older people and cancer report

National End of Life Care Intelligence Network & National End of Life Care Programme (2012) Deaths from urological cancers in England, 2001-10

National Institute for Health and Care Excellence (2004) Improving supportive and palliative care for adults with cancer [CSG4]

National LGBT Cancer Network LGBT Palliative care

NHS RightCare (2018) NHS RightCare scenario: The variation between sub-optimal and optimal pathways. Katie’s story: advanced colorectal cancer

Public Health England, National End of Life Care Intelligence Network (2014) Head and neck cancers in England: who dies from them and where do they die?

Transforming cancer services team for London (TCST), NHS National Cancer Registration and Analysis Service (NCRAS) & Public Health England (PHE) Hospital use and cancer treatment in last 90 days of life, London

Cardiovascular disease

British Heart Foundation (2014) Difficult conversations - talking to people with heart failure about the end of life

British Heart Foundation Heart Matters Wellbeing – End of life care

Department of Health and Social Care (2013) Improving cardiovascular disease outcomes: strategy

Hospice UK (2017) Heart failure and hospice care

Kings College London Sentinel Stroke National Audit Programme (SSNAP)

Marie Curie Caring for someone with heart failure towards the end of life

NHS England (2016) End of life care in heart failure. A framework for implementation

NHS England (2023) Addressing palliative and end of life care needs for people living with heart failure: a revised framework for integrated care systems

Office for Health Improvement & Disparities (OHID) Cardiovascular disease profiles

Public Health England, National Cardiovascular Intelligence Network Cardiovascular disease prevention[ENd7] 

Public Health England (2019) Cardiovascular disease data and analysis: guide for health professionals[ENd8] [ENd9] 

Public Health England, National End of Life Care Intelligence Network & National End of Life Care Programme (2013) Deaths from cardiovascular diseases: Implications for end of life care in England

Taskforce for Lung Health Right care in the last year of life

COVID-19

All-Party Parliamentary Group, Hospice UK and End of Life Care (2023) The lasting impact of COVID-19 on death, dying and bereavement

British Geriatrics Society (2020) COVID-19: End of life care in older people[ENd12] [ENd13] 

GOV.UK Coronavirus (COVID-19) dashboard UK

Institute for Public Policy Research (2021) The state of end of life care: Building back better after Covid-19

Marie Curie (2022) Better End of Life July 2022 research reports

Office for Health Improvement & Disparities (OHID) Excess mortality in England: English regions

Office for Health Improvement & Disparities (OHID) Wider Impacts of COVID-19 on Health (WICH) monitoring tool

The Patients Association (2020) The Pandemic Patient Experience

UKHSA (202) Guidance for care of the deceased with suspected or confirmed coronavirus (COVID-19)

Dementia

Alzheimer's Society, Alzheimer's Research UK and Marie Curie (2017) Caring for someone with dementia at the end of life

Alzheimer's Society (2021) End of life care. Factsheet 531LP

Alzheimer's Society How to know when a person with dementia is nearing their end of life

British Geriatrics Society (2020) End of life care in frailty: dementia

Dementia UK (2023) Recognising the later stages of dementia and moving towards end of life care

Department of Health and Social Care (2015) Prime Minister's challenge on dementia 2020

National End of Life Care Intelligence Network & National End of Life Care Programme (2010) Deaths from Alzheimer’s disease, dementia and senility in England

National Institute for Health and Care Excellence (2018) Dementia: assessment, management and support for people living with dementia and carers [NG97]

National Institute for Health and Care Excellence (2019) Dementia [QS184]

National Institute for Health and Care Excellence (2022) Scenario: management of end-stage dementia

NHS England (2018) My future wishes. Advance Care Planning (ACP) for people with dementia in all care settings

Public Health England, National Mental Health, Dementia and Neurology Intelligence Network (2016) Dementia data and analysis: a guide for health professionals

Office for Health Improvement & Disparities (OHID), National Mental Health, Dementia and Neurology Intelligence Network Dementia profile

Public Health England, National Mental Health, Dementia and Neurology Intelligence Network and National End of Life Care Intelligence Network (2016) Dying with dementia. Data briefing

Social care institute for excellence (SCIE) End-of-life care and dementia: An introduction

Diabetes

Diabetes UK (2021) End of life guidance for diabetes care

Marie Curie Caring for someone with diabetes towards the end of life

Office for Health Improvements and Disparities Diabetes

Frailty

British Geriatrics Society End of Life Care in Frailty

Hospice UK Extending Care Programme

NHS RightCare (2019) Frailty Toolkit

Kidney disease

Marie Curie Caring for someone with kidney failure towards the end of life

National End of Life Care Intelligence Network & National End of Life Care Programme (2010) Deaths from renal diseases in England, 2001 to 2008

National Kidney Federation End of life care for renal patients

NHS Improvement (2017) End of life care in advanced kidney disease: a framework for implementation

NHS RightCare (2018) NHS RightCare scenario: The variation between sub-optimal and optimal pathways. Abdul’s story: Progressive chronic kidney disease

Liver disease

British Society of Gastroenterology (2014) BASL decompensated cirrhosis care bundle - first 24 hours

British Society of Gastroenterology (2022) End of life care in advanced chronic LiVEr disease (EVOLVE)

Public Health England Liver disease profiles

Public Health England, National End of Life Care Intelligence Network & National End of Life Care Programme (2012) Deaths from liver disease: Implications for end of life care in England

Public Health England and NHS RightCare (2017) The 2nd Atlas of variation in risk factors and healthcare for liver disease in England

Mental Health

Marie Curie Inequities in palliative care – mental health

Marie Curie Mental capacity in palliative care

National Audit of Care at the End of Life (NACEL) Mental health summary audit report England and Wales (2021/22)

Office for Health Improvements & Disparities (2022) Premature mortality in adults with severe mental illness

The Lancet (2019) Palliative care for people with serious mental illness

What Works Wellbeing (2021) Dying well: wellbeing at the end of life[ENd16] 

Multi-morbidity

Office for National Statistics (ONS) (2022) Rolling annual deaths registration by place of occurrence, England ending quarter 1 (Apr-Jun) of financial year 2022 to 2023

National Institute for Health and Care Excellence (2016) Multimorbidity: clinical assessment and management [NG56]

Musculoskeletal

Arthritis Research UK (2018) Musculoskeletal conditions and multi-morbidity

Lancashire County Council Musculoskeletal conditions

Public Health England (2017) Musculoskeletal conditions: return on investment tool

Versus Arthritis The state of musculoskeletal health 2021

Neurological disease

Marie Curie Caring for someone with motor neurone disease towards the end of life

Marie Curie Caring for someone with multiple sclerosis towards the end of life

Marie Curie Caring for someone with Parkinson’s towards the end of life

Motor Neurone Disease Association Palliative and end of life care

NHS England NHS RightCare (2019) Progressive neurological conditions Toolkit

Public Health England, National End of Life Care Intelligence Network & National End of Life Care Programme (2010) Deaths from neurodegenerative diseases in England, 2002 to 2008

Public Health England, Neurology Intelligence Network and National End of Life Care Intelligence Network (2018) Deaths associated with neurological conditions

Respiratory disease

Marie Curie Caring for someone with a long-term lung condition

NHS England (2018) Improving access and coordination to palliative care for patients with end stage respiratory disease

Office for Health Improvement & Disparities Inhale - INteractive Health Atlas of Lung conditions in England

Public Health England (2019) The 2nd Atlas of variation in risk factors and healthcare for respiratory disease

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Inequalities

People from certain groups sometimes experience poorer quality care at the end of their lives. This section signposts policy and guidance which addresses these inequalities.

Ethnicity

Age UK (2021) Breaking down the barriers of ethnic inequalities in health

BASW Palliative and end of life care for Black, Asian and Minority Ethnic groups in the UK

Care Quality Commission (CQC) (2016) People from black and ethnic minority communities. A different ending: addressing inequalities in end of life care

NHS Increasing the number of people from a black, Asian and minority ethnic (BAME) background accessing palliative care services

Public Health England, King’s College London, Marie Curie Cancer Care (2013) Palliative and end of life care for Black, Asian and Minority Ethnic groups in the UK Demographic profile and the current state of palliative and end of life care provision

Public Health England, National End of Life Care Intelligence Network (2017) Place of death by ethnic group for people who died from cancer, England 2008 to 2017

Race Equality Foundation (2018) Dementia and end of life care for black, asian and minority ethnic communities

Deprivation

All-Party Parliamentary Group for Terminal Illness (2021) No place like home

Marie Curie (2021) Inequalities in palliative care - Deprivation

Homelessness

Care Quality Commission (CQC) and Faculty for Homeless and Inclusion Health (2017) A second class ending. Exploring the barriers and championing outstanding end of life care for people who are homeless

Frontline Network St Mungo’s How to support individuals and end of life care needs

Government Statistical Service UK official statistics on homelessness: Comparisons, definitions, and processes

Hospice UK (2018) Care committed to me

Office for National Statistics (2020) Deaths of homeless people in England and Wales

St Ann’s Hospice Homelessness and palliative care – the film

St Ann’s Hospice Homelessness and palliative care: how can we improve equity of care?

St Mungos & Marie Curie Cancer Care (2017) Homelessness and end of life care. Practical information and tools to support the needs of homeless people who are approaching the end of life and those who are bereaved

The University of Sheffield and Crisis (2012) Homelessness kills: An Analysis of the mortality of people in early twenty-first century England

Prisoners

Ambitions for Palliative and End of Life Care Partnership (2018) Dying well in custody charter. A national framework for local action

Centre for Policy on Ageing (2016) Diversity in older age – Older offenders

Hospice UK (2021) Dying behind bars. How can we better support people in prison at the end of life?

Ministry of Justice Safety in Custody quarterly

Nuffield Trust (2021) Injustice? Towards a better understanding of health care access challenges for prisoners

Nuffield Trust (2023) Living (and dying) as an older person in prison

Prisons and Probation Ombudsman for England and Wales (2013) Learning from PPO Investigations: End of life care

Public Health England (2017) Health and social care needs assessments of the older prison population. A guidance document

Learning disabilities

NHS England & Palliative care for people with learning disabilities network (2017) Delivering high quality end of life care for people who have a learning disability

NHS England National end of life care programme: The route to success in end of life care - achieving quality for people with learning disabilities

PCPLD Network and NHS England (2017) Delivering high quality end of life care for people who have a learning disability. Resources and tips for commissioners, service providers and health and social care staff

PCPLD Network Resources

LGBTQ+

Hospice UK Providing palliative and end of life care to trans and gender diverse communities

LGBT Foundation End of life care

Marie Curie (2016) “Hiding who I am” The reality of end of life care for LGBT people

Marie Curie Palliative and end of life care for LGBTQ+ people

General

Care Quality Commission (2016) A different ending: end of life care review

Hospice UK Promoting equality in end of life care

Macmillan Cancer Support (2017) The final injustice: Variations in end of life care in England

Manchester Metropolitan University and Community Fund (2019) Good Practice Guidance. Supporting people with substance abuse problems at end of life

Manchester Metropolitan University (2019) Palliative end of life care for people with alcohol and drug problems

Marie Curie (2020) A place for everyone. What stops people from choosing where to die?

NHS England Addressing inequalities in end of life care

Office for National Statistics (ONS) (2023) Inequalities in mortality involving common physical health conditions, England: 21 March 2021 to 31 January 2023

UK Parliament POST Palliative and end of life care

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Commissioning and contracting

Guidance to support the commissioning of local palliative and end of life care services.

Gold Standards Framework (2015) The Gold Standards Framework

Local Government Association and ADASS (2020) End of life care. Guide for councils

Marie Curie Commissioning our services

NHS England NHS Oversight framework and assessment

NHS England (2014) Commissioning for carers

NHS England (2017) Palliative care currency

NHS England Personal health budgets in end of life care

NHS England Resources for commissioners

NHS England (2016) Specialist level palliative care: Information for commissioners

Public Health England (2017) End of life care economic tool

Royal College of General Practitioners (2013) Commissioning guidance in end of life care

The King’s Fund Dying well: commissioning quality end-of-life care services

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Data and intelligence

A list of other intelligence products such as reports, data sources and interactive tools which may be of interest to people working in palliative and end of life care.

Bereavement

COVID Bereavement Bereavement during COVID-19: A national study of bereaved people’s experiences and the impact on bereavement services

Department for Work and Pensions (2022) Bereavement Support Payment Statistics: background information and methodology

European Association for Palliative Care (EAPC) Bereavement care provision in palliative care – a European descriptive and consensus-building exercise

Workforce

Association for Palliative Medicine (APM) (2019) Report and overview of the palliative medicine workforce in the United Kingdom

Hospice UK (2019) Results from an analysis of hospice community volunteering

NHS Digital (2020) General Practice workforce interactive dashboard

NHS Digital NHS workforce statistics

Skills for Care Data and publications

Carers / Unpaid carers

Age UK (2020) Parliamentary Briefing Social Care Reform

Age UK (2015) Briefing: the health and care of older people in England

Carers UK Key facts and figures about caring

Carers UK Facts about carers

Carers UK (2019) State of caring: a snapshot of unpaid care in the UK

Department for Work and Pensions (2022) The Family Resources Survey: financial year 2020-21

Hospice UK Current state of caring for family carers in UK hospices

NHS Digital (2019) Personal Social Services Survey of Adult Carers in England 2021-22

Office for Health Improvement & Disparities (2022) National GP Profiles (unpaid carers)

Office for National Statistics (2022) Population explorer: age, health and unpaid care

Office for National Statistics (2017) Unpaid carers provide social care worth £57 billion

The Health Foundation (2023) Understanding carers and their access to support

Coroners

Ministry of Justice (2021) Coroners statistics 2020: England and Wales

Economic cost

Public Health England End of life care economic tool

Nuffield Trust (2014) Exploring the cost of care at the end of life

Sue Ryder (2021) Modelling demand and costs for palliative and end of life care services. A final report for Sue Ryder

Funerals

Royal London (2020) The impact of Covid-19 on funerals. National Funeral Cost Index Report 2020

Sunlife (2023) Cost of Dying Report

General

Care Quality Commission (2022) Local authority area data profiles

Gold Standards Framework (2009) End of life care in primary care: 2009 national snapshot

Hospice UK Population Based Needs Assessment Tool (PopNAT)

Hospice UK Innovation Hub

Institute for Public Policy Research (2018) End of life care in England, a briefing paper

National Institute for Health and Care Research (NIHR) (2022) Teamwork and proactive healthcare could help people with severe mental illness receive good end-of-life

NHS Digital Social care collections 2021

NHS England (2019) NHS continuing healthcare and NHS-funded nursing care

NHS England Resources for long term conditions

NHS RightCare RightCare resources

OECD (2023) Time for better care at the end of life

Office for Health Improvement & Disparities Musculoskeletal health: local profiles

Office for National Statistics (2015) National Survey of Bereaved People (VOICES): England

Public Health England (2019) Classification of place of death

Public Health England (2017) Health profile for England

Public Health England, National End of Life Care Intelligence Network (2019) Death in people aged 75 years and older in England 2017

Public Health England, National End of Life Care Intelligence Network (2020) Emergency admissions in the 3 months before death

Public Health England, National End of Life Care Intelligence Network (2017) End of life care data to inform Sustainability and Transformation Partnerships (STPs): updated tool and metadata guide

Public Health England, National End of Life Care Intelligence Network & NHS England (2016) Evaluation of palliative care clinical data set

Public Health England, National End of Life Care Intelligence Network (2019) Older people who died in hospital: England 2017

Public Health England, national end of life care intelligence network (2019) Palliative and end of life care: hospital deaths 2006 to 2017

Public Health England, National End of Life Care Intelligence Network (2020) Older people’s hospital admissions in the last year of life

Public Health England, National End of Life Care Intelligence Network & National End of Life Care Programme (2011) External causes of death

Public Health England, National End of Life Care Intelligence Network & National End of Life Care Programme (2011) Predicting death: estimating the proportion of deaths that are 'unexpected'

Public Health England & NHS RightCare (2018) Atlas of variation for palliative and end of life care in England

The King’s Fund (2014) Making our health and care systems fit for an ageing population

Versus Arthritis Data and Statistics

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Education and training

Links to training resources designed to improve the quality of palliative and end of life care services.

Advance Care Planning

Gold Standards Framework Advance care planning

Marie Curie Advance care planning for healthcare professionals

National Institute for Health and Care Excellence (NICE) Advance care planning. A quick guide for registered managers of care home and home care services

Bereavement

Hospice UK Grief support during COVID-19

Hospice UK Bereavement project resources toolkit

Disease-specific

Grey Matter Learning Motor neurone disease online care course

Macmillan Cancer Support Palliative and end of life care support for health professionals

Social Care Institute for Excellence (SCIE) Dementia awareness e-learning course (free course; requires registration)

UK Parkinson’s Excellence Network Understanding Parkinson’s for health and social care staff – online (excellence network) (free course)

General

Better Conversation Better Health Resources for a better conversation

Cultivating Compassion The Toolkit

Derbyshire Alliance for End of Life Care Derbyshire Alliance for End of Life Care Toolkit 

Derby Teaching Hospitals NHS Foundation Trust The AMBER care bundle

Difficult Conversations Training for health and social care professionals

Gold Standards Framework Training Programmes

Grey Matter Learning End of life care online training course

Healthcare Conferences UK Conferences and masterclasses. Palliative and end of life care training

Health Education England End of life care for all – e-Learning to enhance education and training for end of life care

Hospice UK (2015) Care after death

Hospice UK What we offer: Courses, conferences and learning events

Marie Curie Learn and develop (login required)

Marie Curie Palliative care knowledge zone

Nottinghamshire Local Workforce Action Board Frailty Toolkit

Public Health England (2016) Faith at end of life: public health approach resource for professionals

Royal College of General Practitioners End of life and palliative care toolkit

Royal College of Nursing End of life care and wellbeing for the nursing and midwifery workforce

Skills for Care End of life care

Southern Derbyshire Clinical Commissioning Group Care home companion

The Royal College of Emergency Medicine (2020) The RCEM end of life care toolkit

UK Council for Clinical Communication E-learning (login required)

Inequalities

Marie Curie Caring for people experiencing homelessness in palliative care

National Institute for Health and Care Research (NIHR) (2022) End of life care: research highlights the importance of conversations and need for equal access

Pathway  Homeless palliative care toolkit

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