End of Life Care Strategy
Promoting high quality care for all adults at the end of life.
Bibliography
July 2008
End of Life Care Strategy
Academic research
(alphabetical order, by author)
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Storey L, Wood J, Clark DA. View from the Observatory: Developing an
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Stroebe M, Schut H, Stroebe W. Health outcomes in bereavement. Lancet 2007;
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Stuart B, D’Onofrio CN, Boatman S, Feigelman G. CHOICES: promoting early
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Sullivan KA, McLaughlin D, Hasson F. Exploring district nurses’ experience of a
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Thomas C, Morris SM, Clark D. Place of death: preferences among cancer patients
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Thomas K. Caring for the Dying at Home: Companions on the Journey. Radcliffe
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Todd C, Grande GE, Barclay S, Farquhar M. General Practitioners’ and District
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Tomasovic N. Geriatric-palliative care units model for improvement of elderly care.
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Travis S, Hunt P. Supportive and palliative care networks: a new model for
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Tyrer F, Exley C. Receiving care at home at the end of life: Characteristics of
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Vallelly S, Evans S, Fear T, Means R. Opening doors to independence: A
longitudinal study exploring the contribution of extra care housing to the care and
support of older people with dementia. University of West of England/Housing
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Walshe C, Caress A, Chew-Graham C, Todd C. Case studies: a research strategy
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Walshe C, Todd C, Caress A-L, Chew-Graham C. Judgements about fellow
professionals and the management of patients receiving palliative care in primary
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Ward C. The need for palliative care in the management of heart failure. HEART
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Watson R, Stimpson A, Hostick T. Prison Health Care: a review of the literature.
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Welch LC, Teno JM, Mor V. End-of-life care in black and white: race matters for
medical care of dying patients and their families. Journal of American Geriatric
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Williams J, Corcoran G. Palliative Care Prescribing. Drug Information Letter
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Winzelberg GS, Hanson LJ, Tulksy J. Beyond autonomy. Diversifying end of
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Zavaroni C. Home care and short-run nursing homes: organizational aspects of
their integration with oncological organizations. Critical Reviews in Oncology/
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22
End of Life Care Strategy
Policy documents, guidance and reports
Departments of State and other governmental bodies
(in chronological order)
Sidell et al. Dying in Nursing and Residential Homes for Older People: examining
the case for palliative care. Report for the Department of Health. Milton Keynes:
Open University (1997)
First assessments: a review of District Nurse services in England and Wales. Audit
Commission, London (1999)
National Service Framework for Mental Health: modern standards and service
models. Department of Health, London, England (September 1999)
Care Standards Act (Chapter 14) (2000)
The role of the voluntary and community sector in service delivery – a cross
cutting review. HM Treasury, London, England (2000)
National Service Framework for Coronary Heart Disease: modern standards and
service models. Department of Health, London, England (March 2000)
The NHS Plan: The Government’s response to the Royal Commission on Long
Term Care. Department of Health, London, England (July 2000)
The NHS Cancer Plan: A plan for investment; a plan for reform. Department of
Health, London, England (September 2000)
Raising standards for patients: new partnerships in out-of-hours care. An
independent review of GP out-of-hours services in England commissioned by the
Department of Health. Department of Health, London, England (October 2000)
Care Homes Regulations 2001 (SI 2001 No 3965)
National Service Framework for Older People. Department of Health, London,
England (March 2001)
Seeking our Future Health: Taking a Long-Term View [the Wanless Report]. HM
Treasury, London, England (April 2002)
Care Homes for Older People: National Minimum Standards. Care Homes
Regulations, 3rd Edition. Department of Health, London, England (2003)
23
End of Life Care Strategy
Death Certification and Investigation in England, Wales and Northern Ireland. The
Report of a Fundamental Review 2003. Home Office (June 2003)
NHS Chaplaincy: Meeting the religious and spiritual needs of patients and staff.
Department of Health, London, England (November 2003)
Building on the Best: Choice, Responsiveness and Equity in the NHS. Department
of Health, London, England (December 2003)
Mortality Statistics. Office for National Statistics (2004)
No problems – old and quiet: Older prisoners in England and Wales. A thematic
review by HM Chief Inspector of Prisons (2004)
National Service Framework for Renal Services. Department of Health, London,
England (January 2004 and following)
Unpacking the patients’ perspective: Variations in NHS patient experience in
England. Commission for Health Improvement (February 2004)
Improving Supportive and Palliative Care for Adults with Cancer. National Institute
for Health and Clinical Excellence (March 2004)
Gysels M, Higginson IJ. Improving supportive and palliative care for adults with
cancer: Research Evidence. London: National Institute of Clinical Excellence (2004)
Standards for Better Health. Department of Health, London, England (July 2004)
House of Commons Health Committee: Palliative Care. Fourth Report of Session
2003–04 (July 2004)
Government Response to the House of Commons Health Committee Report on
Palliative Care. Fourth Report of Session 2003–04 (September 2004)
Delivering the Out-of Hours Review: Securing proper access to medicines in
the out-of-hours period – a practical guide for PCTs and organised providers.
Department of Health, London, England (December 2004)
Mortality Statistics (DH2 No. 32). Office for National Statistics (2005)
The Mental Capacity Act 2005. The Stationery Office
Long Term (Neurological) Conditions National Service Framework. Department of
Health, London, England (March 2005)
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Survey of bereavement care and other support services. Department of Health,
London, England (July 2005)
Variations in the experiences of patients in England: Analysis of the Healthcare
Commission’s 2003/2004 national surveys of patients. Healthcare Commission
(October 2005)
When a patient dies: Advice on developing bereavement services in the NHS.
Department of Health, London, England (October 2005)
A National Framework to Support Local Workforce Strategy and development
– A Guide for HR Directors in the NHS and Social Care. Department of Health,
London, England (December 2005)
The State of Social Care in England 2004/05 Report. Commission for Social Care
Inspection (December 2005)
Allen R. Statistics on deaths reported to coroners, England and Wales, 2005.
London: Department of Constitutional Affairs, London, England (2006)
Improving financial relationships with the third sector: Guidance to funders and
purchasers. HM Treasury, London, England (2006)
Our Health, Our Care, Our Say: a new direction for community services.
Department of Health. London, England (January 2006)
A New Ambition for Old Age: Next Steps in Implementing the National Service
Framework for Older People (Dignity in Care for Older People). Department of
Health, London, England (April 2006)
What to do after a death in England and Wales. A guide to what you must do and
the help you can get. Department for Work and Pensions, London, England
(April 2006)
Addington-Hall J, Shipman C, Burt J, Ream E, Beynon T, Richardson A. Evaluation
of the education and support programme for district and community nurses in
the principles and practice of palliative care. King’s College, London, for the
Department of Health, London, England (July 2006)
Our health, our care, our community: investing in the future of community
hospitals and services. Department of Health, London, England (July 2006)
25
End of Life Care Strategy
Care and respect in death: Good practice guidance for NHS mortuary staff.
Department of Health, London, England (August 2006)
Help is at hand: a resource for people bereaved by suicide and other sudden,
traumatic death. Department of Health, London, England (September 2006)
Strong and Prosperous Communities: The Local Government White Paper.
Department for Communities and Local Government, London, England
(October 2006)
Diabetes Commissioning Toolkit. Department of Health, London, England
(November 2006)
The future regulation of health and adult social care in England. Department of
Health consultation document (November 2006) (closed 28 February 2007)
Variations in the experiences of patients using the NHS services in England:
Analysis of the Healthcare Commission’s 2004/2005 survey of patients.
Healthcare Commission (November 2006)
Care and resource utilisation: ensuring appropriateness of care. Department
of Health, London, England (December 2006)
Human rights: human lives: a handbook for public authorities. Department
for Constitutional Affairs, London, England (December 2006)
Improving Stroke Services: a guide for commissioners. Department of Health,
London, England (December 2006)
Allen R. Statistics on deaths reported to coroners, England and Wales, 2006.
London: Department of Constitutional Affairs, London, England (2007)
Improving services and support for people with dementia. National Audit Office,
England (2007)
Lee S. Making decisions: The Independent Mental Capacity Advocate (IMCA)
Service (The Mental Capacity Act 2005). Speaking Up. Publisher: The Mental
Capacity Implementation Programme (2007)
Spotlight on complaints. A report on second-stage complaints about the NHS
in England. Healthcare Commission (January 2007)
26
End of Life Care Strategy
Making decisions: A guide for people who work in health and social care (The
Mental Capacity Act 2005). National Care Association. Publisher: The Mental
Capacity Implementation Programme (February 2007)
Sudden Death and the Coroner. Department of Health, London, England.
(February 2007)
Commissioning Framework for Health and Well-being. Department of Health
consultation document (March 2007) (closed 28 May 2007)
Lyons Inquiry into Local Government. Place-shaping: a shared ambition for the
future of local government. The Stationery Office (March 2007)
Options for the Future of Payment by Results: 2008/09 to 2010/11. Department
of Health consultation document. (March 2007) (closed 22 June 2007)
Dame Denise Platt. The Status of Social Care – A Review 2007. Department of
Health, London, England (April 2007)
Operating Framework 2007/08: PCT baseline review of services for end of life
care. Department of Health, London, England (Gateway Reference 8116)
(April 2007)
Bereavement: A guide for transsexual, transgender people and their loved ones.
Department of Health, London, England (May 2007)
Palliative care services for children and young people in England: an independent
review for the Secretary of State for Health. Professor Sir Alan Craft and Sue
Killen. Department of Health, London, England (May 2007)
A New Deal for Carers. Department of Health consultation document (June 2007)
(closed September 2007)
The National Framework for NHS Continuing Healthcare and NHS-funded Nursing
Care. Department of Health, London, England (June 2007)
Health and Social Care Outcomes and Accountability Framework (2008/09 –
2010/11). Department of Health consultation document (June 2007)
(closed 27 July 2007)
Consultation on Improving the Process of Death Certification. Department of
Health consultation document (July 2007) (closed October 2007)
27
End of Life Care Strategy
Improving services and support for people with dementia. National Audit Office.
ISBN 9780102945614 (July 2007)
Pushing the boundaries. Improving services for people with heart failure.
Healthcare Commission (July 2007)
Statutory Duty for Doctors and other Public Service Personnel to Report Deaths to
the Coroner. Ministry of Justice consultation paper (July 2007) (closed September 2007)
Expert Carers Programme. Department of Health, London, England (August 2007)
Henry C, Seymour JE. Advance care planning: a guide for health and social care
professionals. NHS End of Life Care Programme/University of Nottingham (2007)
The NHS in England: The Operating Framework for 2008/09. Department of
Health, London, England (December 2007)
World Class Commissioning: Vision; Competencies. Department of Health,
London, England (December 2007)
Guidance on Joint Strategic Needs Assessment. Department of Health, London,
England (December 2007)
Spotlight on Complaints: A report on second-stage complaints about the NHS in
England. Healthcare Commission (April 2008)
Statistics on deaths reported to coroners England and Wales, 2007. Ministry of
Justice Statistics Bulletin (May 2008)
Carers at the heart of 21st-century families and communities. HM Government,
London, England (June 2008)
Draft charter for bereaved people who come into contact with a reformed coroner
system. Ministry of Justice, London, England (June 2008)
High Quality Care For All. NHS Next Stage Review Final Report. Department of
Health, London, England (June 2008)
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End of Life Care Strategy
Other organisations
(in chronological order)
Anonymous. Review of Palliative Care Services. London: Brent and Harrow Health
Agency (1994)
National Palliative Care Strategy: A National Framework for Palliative Care Service
Development. Commonwealth Department of Health and Aged Care, Canberra,
Australia (October 2000)
www.health.gov.au/internet/wcms/publishing.nsf/Content/palliativecare-pubsnpcstrat.htm/$FILE/Strategy.pdf
Froggatt K. Palliative Care Education in Nursing Homes. Macmillan Cancer Relief,
London (2000)
RCP, RCN, BGS. The health and care of older people in care homes: a
comprehensive interdisciplinary approach. A report of a joint working party. Royal
College of Physicians of London, London (2000)
Fisher R, Ross M. A guide to end-of-life care for seniors. University of Toronto &
University of Ottawa (2000)
The New Zealand Palliative Care Strategy. Ministry of Health, Wellington, New
Zealand (February 2001)
www.moh.govt.nz/moh.nsf/238fd5fb4fd051844c256669006aed57/b91ac89e
05e74cb2cc256b6d0071b104?OpenDocument#The%20New%20Zealand%20
Palliative%20Care%20S
Milne A, Hatzidimitriadou E, Chryssanthropoulou C, Owen T. Caring in later life:
reviewing the role of older carers. London: Help the Aged (2001)
Codes of Practice for Social Care Workers. General Social Care Council (2002)
www.gscc.org.uk
Withholding and Withdrawing Life-Prolonging Treatments: Good practice in
decision making. General Medical Council (2002)
Spiritual and Religious Care – Competencies for Specialist Palliative Care. Marie
Curie Cancer Care (2003)
Tomorrow’s Doctors: Recommendations on undergraduate medical education.
General Medical Council (February 2003)
29
End of Life Care Strategy
The use of strong opioids in palliative care. MeReC Briefing. Issue No 22. NHS
National Prescribing Centre (June 2003)
Tebbit P. Population-Based Needs Assessment for Palliative Care – A Manual for
Cancer Networks. National Council for Palliative Care (May 2004)
Froggatt K. Palliative Care in Care Homes for Older People. National Council for
Palliative Care (November 2004)
European Federation of Older People (EFOP). Making Palliative Care a
Priority Topic on the European Health Agenda and Recommendations for the
Development of Palliative Care In Europe. EURAG, Graz: Austria (2004)
Compact Code of Good Practice. Funding and Procurement (revised). Compact
Working Group (2005). The Compact Working Group C/O NCVO/Home Office
How we manage death and dying in Norfolk County and Waveney. Report of the
Norfolk Health Overview and Scrutiny Committee in partnership with Norfolk and
Waveney Cancer Network (2005)
ICM/Endemol/BBC Poll. Survey of General Public (2005)
ICM/Endemol/BBC Poll. Bereaved sample (2005)
A strategic review of the provision and commissioning of ambulance services.
Central Cheshire PCT, Mersey Regional Ambulance NHS Trust and Cheshire and
Merseyside SHA (June 2005)
Hockley J et al. Bridges Initiative Project (2005). Available to download from:
www.stcolumbashospice.org.uk
Framework for a National Strategy on Palliative and End of Life Care. Quality End
of Life Care Coalition of Canada. Canadian Hospice Palliative Care Association,
Ottawa, Canada. (September 2005 and 2007)
www.chpca.net/qelccc/information_and_resources/QELCCC_National_Strategy_
Framework_English.pdf
www.chpca.net/qelccc/information_and_resources/8-QELCCC_2007_Workplan.pdf
Clarke M, Riley S. Best Practice, Better Practices: A new deal for carers in primary
care. The Princess Royal Trust for Carers (2006)
Consensus Syllabus for Undergraduate Palliative Medicine in Great Britain and
Ireland. The Association of Palliative Medicine of Great Britain and Ireland (2006)
30
End of Life Care Strategy
Exploring palliative care for people with dementia. The National Council for
Palliative Care (2006)
Planning for Choice in End of Life Care: Educational Guide. Help the Aged (2006)
The Final Lap. Improving end of life care in Methodist Homes for the Aged Care
Group. Methodist Homes for the Aged Care Group (2006)
The Marie Curie Delivering Choice Programme: Impact Report 1. Marie Curie
Cancer Care (2006)
Standards for Hospice and Palliative Care Chaplaincy (second edition). Association
of Hospice and Palliative Care Chaplains (second edition 2006)
UK Ambulance Service Clinical Practice Guidelines. Joint Royal Colleges Ambulance
Liaison Committee; The Ambulance Service Association (2006)
Introductory Guide to End of Life Care in Care Homes. End of Life Care
Programme and National Council for Palliative Care (March 2006)
Henry C, Fenner P, Storey G, Walker N, Casey M, Bullen M. Service specification
for commissioning end of life care for social and health care commissioners. NHS
End of Life Care Programme (July 2006)
Population-Based Needs Assessment For End of Life Care – A Compendium of
Data for SHAs and PCTs. National Council for Palliative Care (September 2006)
My Home Life: quality of life in care homes. Help the Aged (November 2006)
Gunaratnam Y. Widening access to hospice care: A briefing paper for managers
and trustees. Help the Hospices (November 2006)
National Survey of Patient Activity Data for Specialist Palliative Care Services.
MDS Full Report for the year 2005–2006. National Council for Palliative Care
(November 2006)
SPPC. Making good care better: national practice statements for general palliative
care in adult care homes in Scotland. Scottish Partnership for Palliative care (2006)
An Overview of the UK domiciliary care sector. United Kingdom Home Care
Association (2007)
31
End of Life Care Strategy
Community Hospital Survey 2007. NHS Institute for Innovation and Improvement.
www.institute.nhs.uk/quality_and_value/productivity_series/survey.html
Curriculum Statement 12 – Care of people with Cancer and Palliative Care. The
Royal College of General Practitioners (2007)
My home life: Quality of life in care homes. A review of the literature. Help the
Aged (2007)
Under funded, undervalued and unfit: A fresh approach to social care for older
people in England. Help the Aged (2007)
A Review of Care at the End of Life in Hampshire. Hampshire County Council
Health Overview and Scrutiny Committee (January 2007)
Advance Care Planning: A Guide for Health and Social Care Staff. NHS End of Life
Care Programme and University of Nottingham (February 2007)
Tebbit P. End of Life Care: A Commissioning Perspective. National Council for
Palliative Care. (February 2007)
Death by indifference. Mencap (March 2007)
Casemix Service HRG4. Introduction to HRG4. The Information Centre. Version
No 1.0 (19 March 2007)
Casemix Service HRG4. Introduction to Chapter SD: Specialist Palliative Care. The
Information Centre. Version No 1.0 (13 April 2007)
End of Life Care: A strategy for improving care for people living with and dying
from long term conditions 2006–2011. Bolton Primary Care Trust (April 2007)
Help with the cost of cancer: a guide to benefits and financial help for people
affected by cancer. Macmillan Cancer Support (April 2007)
Maher J. ‘What if’ communication between consultants and people nearing the
end of their lives. Macmillan Cancer Support (April 2007)
Integrated Cancer Care Programme 2004–06. United Health Europe (May 2007)
Building on Firm Foundations. NHS End of Life Care Programme/National Council
for Palliative Care (June 2007)
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End of Life Care Strategy
Darzi, Professor the Lord, KBE. Healthcare for London: A Framework for Action.
Report to NHS London. NHS London (July 2007)
The Cancer Guide. Macmillan Cancer Support (July 2007)
Helping you get the information you need. Macmillan Cancer Support
(August 2007)
National Care of the Dying Audit – Hospitals (NCDAH). Summary Report
2006/07. Marie Curie Palliative Care Institute Liverpool/Royal College of
Physicians Clinical Effectiveness and Evaluations Unit (August 2007)
Progress with Dementia. Moving Forward: Addressing Palliative Care for People
with Dementia. National Council for Palliative Care (August 2007)
The New Doctor: General Medical Council (August 2007)
The 10 Step Continuous Quality Improvement Programme using the Liverpool
Care Pathway for the Dying Patient (LCP) Framework within the Intensive Care
Unit (ICU). The Marie Curie Palliative Care Institute, Liverpool; Royal Liverpool and
Broadgreen University Hospitals; University of Liverpool (August 2007)
Bruckner L, Yeandle S. Valuing Carers – calculating the value of unpaid care.
Carers UK (2007).
www.carersuk.org/Policyandpractice/Research/Profileofcaring/1201108437/
ValuingcarersFINAL.pdf
Dale J, Koistinen J, Mahmood K, Munday D, Petrova M, Thomas K. Evaluation of
the Gold Standards Framework Macmillan Phases 3 – 6 (2003–2005): Final Report.
Coventry: Centre for Primary Health Care Studies, University of Warwick (2007)
Badger F, Shaw K, Clifford C, Thomas K. Evaluation of a framework for end of
life care in primary care a report for the public health department, Walsall tPCT:
School of Health Sciences, University of Birmingham (2008)
King N, Melvin J, Ashby J. Community nursing roles and the Gold Standards
Framework for community palliative care. University of Huddersfield (2008)
Waller S, Dewar S, Masterson A, Finn H. Improving Environments for Care at End
of Life: Lessons from Eight UK Pilot Sites. King’s Fund (2008)
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End of Life Care Strategy
Hospice and Palliative Care Directory United Kingdom and Ireland 2008. Hospice
Information (2008)
Caring for someone with a terminal illness – some facts and figures. Help the
Hospices (2008)
Creative Partnerships. Improving Quality of Life at the End of Life for People with
Dementia. A Compendium. National Council for Palliative Care (January 2008)
Relf M, Machin L, Archer N. Guidance for bereavement needs assessment in
palliative care. Help the Hospices (February 2008)
The Mental Capacity Act in Practice: Guidance for End of Life Care. National
Council for Palliative Care (March 2008)
Exploring Non-medical Prescribing in Palliative Care. National Council for Palliative
Care/Help the Hospices (March 2008)
Hughes P, Bath P, Ahmed N, Noble B. Improving Supportive and Palliative Care
for Adults with Cancer in Primary Care: A National Survey of General Practices.
University of Sheffield (April 2008)
NHS Next Stage Review – Strategic Health Authorities’ visions for better healthcare
www.dh.gov.uk
Listening to the Experts: A Summary of User Involvement in Palliative Care –
A coping Study. National Council for Palliative Care (May 2008)
Care Homes with Nursing. A data analysis and discussion of their capacity and
function as providers of end of life care. National Council for Palliative Care
(pre-publication)
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End of Life Care Strategy
Additional information/contacts
NHS End of Life Care Programme www.endoflifecareforadults.nhs.uk
Marie Curie Delivering Choice Programme
www.deliveringchoice.mariecurie.org.uk
Gold Standards Framework (GSF)
www.goldstandardsframework.nhs.uk.
Liverpool Care Pathway (LCP)
www.lcp-mariecurie.org.uk
Preferred Priorities for Care (PPC)
www.cancerlancashire.org.uk
National Institute for Health and Clinical Excellence www.nice.org.uk
‘Standards of proficiency for pre-registration nursing education.’ Nursing and
Midwifery Council (NMC Circular 07/2007). NMC are also introducing Essential
Skills Clusters for Pre-Registration Nursing programmes www.nmc-uk.org.uk
Standards and outcomes for undergraduate medical training can be found on
www.gmc-uk.org and for F1 medics they are set out in the GMC ‘The New
Doctor (2007)’ and with PMETB www.pmetb.org.uk requirements for F2 are
incorporated into the Curriculum Framework for the Foundation Programme
developed by the Academy of Medical Royal Colleges (AoMRC) and Modernising
Medical Careers www.mmc.nhs.uk/pages/foundation/Curriculum
The standards set by the Health Professions Council for proficiency, education and
training, and CPD can be found at www.hpc-uk.org
Full details of existing competences for health and social care (plus Knowledge
Sets) that can be applied to End of Life Care can be found on www.skillsforcare.
org.uk and www.skillsforhealth.org.uk
Educating Future Physicians in Palliative and End of Life Care (EFPPEC). An
initiative co-facilitated by the Association of Faculties of Medicine of Canada and
the Canadian Hospice Palliative Care Association, funded by Health Canada
www.efppec.ca
Multi-faith group for healthcare chaplaincy (various publications) www.mfghc.
com/standards
Young Carers Initiative. The Children’s Society. www.youngercarer.com
‘When I die’. www.sunderlandpeoplefirst.org.uk
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37
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