2012 news


Marie Curie Cancer Care examines place of death and hospital use at the end of life

20 December 2012

Marie Curie Cancer Care recently commissioned a study which examined its own home–based nursing service to see whether it helped more people to die at home, and reduce hospital use and costs at the end of life.

The results of the study found that people who received Marie Curie Cancer Care were more likely to die at home than those who received standard care, and were less likely to use all forms of hospital care.

Read more on the impact of the Marie Curie Nursing Service on place of death and hospital use at the end of life


New version of end of life care quality assessment tool launched

11 December 2012

The National End of Life Care Intelligence Network (NEoLCIN) has released a new version of the End of Life Care Quality Assessment (ELCQuA) tool.

The new version includes:

  • 42 quality measures across the 16 NICE quality statements, plus a section on raising public awareness of death, dying and end of life care.
  • Alignment of all measures to the NICE quality standard for end of life care.
  • Alignment of quality measures, performance indicators and the red/amber/green (RAG) ratings for each. 
  • A mix of outcomes and process/structure indicators such the proportion of people approaching the end of life reporting that they are adequately supported to live independently and to maintain social participation. 
  • Specific quality measures for groups such as care homes, ambulance services and acute hospital trusts.
  • Measures for patient reported outcomes.

The ELCQuA tool is designed to help a wide range of end of life care commissioners, providers and other stakeholders.

Download the Media release - ELCQuA launch

View the End of Life Care Quality Assessment (ELCQuA) Tool

View the End of Life ELCQuA - Flyer


Elderly and vulnerable left at risk by dangerous and short-sighted cuts to preventative support, warns British Red Cross

10 December 2012

New research conducted by the British Red Cross has revealed that local authority cuts or frozen funding for preventative and lower-level social care are leaving the elderly and vulnerable at risk. And where cuts – of an average of 16% - have taken place, councillors are worried for the elderly and vulnerable in their local area.

The findings echo a new report by the Red Cross which concludes that preventative support services – such as home from hospital schemes, and care in the home – save taxpayers millions in reduced health costs.

Read more on the economic impact of care in the home services.


National End of Life Care Programme offers free publications

6 December 2012

The National End of Life Care Programme has an offer on its publications during the month of December. Larger quantities are now available free of charge to enable us to disseminate as much information as possible about end of life care to health and social care staff across the country. 

For more information, see the Publications List.


 End of Life Care Counts Conference - update and presentations now available

15 November 2012

Updates and presentations from this conference, organised by the National End of Life Care Programme (NEoLCP) and held in London on 16 October, are now available on the NEoLCP website.

See End of Life Care Conference 2012.


The Older People’s Health and Wellbeing Atlas

9 November 2012

As the population ages the health and wellbeing of older people and the provision of services becomes ever more important. The West Midlands Public Health Observatory (WMPHO) on behalf of the Public Health Observatories in England has released the 2012 update of the Older People’s Health and Wellbeing Atlas. The atlas can be used to identify deficits in the health and care of older people and to highlight large variations between local authorities across England. The information will be of use to the wide range of organisations with an interest in the health and care of older people.

View the Older People’s Health and Wellbeing Atlas.


Marie Curie End of Life Care Atlas

18 October 2012

The Marie Curie End of Life Care Atlas is a new information portal that gives people who plan and commission end of life care new insight into care provision in their local areas. The web-based mapping tool brings together a broad range of data on end of life care across the UK’s health landscape. The tool allows users to compare end of life care across areas as well as compare areas against national benchmarks across a range of key indicators.

View the Marie Curie Cancer Care website.


New Social Care TV Films launched on end of life care

17 October 2012

The Social Care Institute for Excellence (SCIE) has published three new Social Care TV films on the theme of end of life care:

  • Coordination of care - This film looks at a pilot scheme that has effectively co-ordinated health and social care services
  • Personalisation – the need to discuss death and dying – This film looks at a scheme which uses personalised care for people at the end of life, with the use of profiles to record likes, dislikes and preferences. The profile is shared with everyone involved in the persons care.
  • Supporting staff in care homes – This film focuses on how care homes support staff to come to terms with the loss of people that they cared for.

View SCIE's End of Life Care Hub website.


New report details patterns of health and social care at the end of life

16 October 2012

The National End of Life Care Intelligence Network in partnership with the Nuffield Trust has published a new end of life report, which builds on an earlier Nuffield Trust study to create and analyse what is believed to be the largest database of its kind to link health and social care datasets in England. The findings suggest that social care may help prevent hospital admission. 

Download the media release.


New end of life care reports and toolkits launched at conference celebrating achievements

16 October 2012

The National End of Life Care Programme recently celebrated the achievements and improvements made in end of life care at the, in the end, care counts: End of life care conference 2012 held in London.   

The conference saw the launch of the Department of Health’s End of Life Care Strategy Fourth Annual Report by Norman Lamb MP, who also launched a new toolkit, on commissioning person-centred end of life care.

Also launched on the day was a new end of life care report and a range of tools and resources.

Read more on the End of life care conference.


Norman Lamb MP, Minister of State for Care Services, to speak at end of life care conference

25 September 2012

With just three weeks left to register for the conference 'In the end, care counts', taking place in Westminster on Tuesday 16th October, the National End of Life Care Programme is delighted that the Minister has made end of life care a priority.

Read more on the National End of Life Care Programme website and register for the conference.


Joint statement of intent of the UK end of life care Research Interest Group

17 September 2012

The UK end of life care Research Interest Group recognise the need for research to provide the evidence base to support the care of people at the end of life. Each organisation will aim to promote high quality research in end of life care, as a collective and individual, according strategies and working practices.

See the National Cancer Research Institute website for more information.


More people able to die at home due to community specialist palliative care

15 August 2012

Specialist palliative care community services are leading to more people being able to die at home, according to a report published today by the National Council for Palliative Care and the National End of Life Care Intelligence Network.

Latest figures from the 2010/11 Minimum Data Set for Specialist Palliative Care Services (MDS) report shows that a third of those receiving specialist palliative care in 2010/11 died at home, compared with just one in five nationally.

Download the report: National Survey of Patient Activity Data for Specialist Palliative Care Services MDS Full Report for the year 2010-2011


New End of Life Care Profiles for each local authority in England

8 August 2012

The National End of Life Care Intelligence Network has published end of life care profiles for each local authority in England. The profiles build on the success of the Primary Care Trust profiles, launched in May, and include social care indicators for the first time.

See the End of Life Care Local Authority Profiles 2012.


New report urges all social workers to make end of life care part of their everyday practice

19 July 2012

Social work is an important element missing from end of life care, according to a report published today by the National End of Life Care Programme (NEoLCP).‘The route to success in the end of life care – achieving quality for social work’, produced in association with The College of Social Work and the latest in the NEoLCP route to success series highlights key issues, actions and practical support for managers and social workers in their work with people and families at the end of life.

Read the media release: New report urges all social workers to make end of life care part of their everyday practice

Download the report: The route to success in end of life care - achieving quality for social work


Results of the first National Bereavement Survey (VOICES) published

3 July 2012

The first national end of life care survey of the bereaved in England has been published by the Office for National Statistics today. The report presents findings on:

  • quality of care
  • co-ordination of care
  • relief of pain and suffering
  • care and support for the patient
  • decision making
  • communication
  • preferences and choice and support for relatives
  • friends and carers.

See a summary of the key findings at National Bereavement Survey (VOICES), 2011

See the National End of Life Care Programme's response


New End of Life Care Primary Care Trust Profiles

22 May 2012

The National End of Life Care Intelligence Network (NEoLCIN) has launched new End of Life Care Profiles for each Primary Care Trust (PCT) in England today.

The profiles are available in PDF format - one for each PCT in England. They present over 40 indicators relating to:

  • population
  • deaths
  • place of death
  • cause of death
  • deaths in hospital
  • care homes
  • end of life care spend.

Each profile provides a snapshot of the PCT's position compared to England. This will help commissioners and providers of end of life care understand the specific needs and characteristics of their local population to help with service planning. The data is also presented in the InstantAtlas tool which enables users to view the data in map, chart and table format and make comparisons across indicators and PCT areas. All the data can also be exported from the InstantAtlas tool for local analysis.


Tried and tested End of Life Care Modelling Tools launched today

22 May 2012

Eight early adopter sites across England have been involved in trialling a set of modelling tools to support end of life care commissioners and planners. The updated tools are now freely available on the National End of Life Care Intelligence Network website together with a range of supporting materials, including workbooks and case studies from the early adopters.

There are three modelling tools:

  • the Cohort Model that identifies the end of life care needs of their population over a 10-year period
  • the Skills for Health Functional Analysis tool, which assesses workforce skills required to ensure quality end of life care provision and
  • the Yorkshire & the Humber Co-Design Model, which assesses how many people dying in hospital could reasonably end life in an alternative care setting and provides costings for Alternative Care Pathways.

Together these tools:

  • provide analytical support to organisations aiming to achieve the vision of the National End of Life Care Strategy and the NHS QIPP agenda
  • provide commissioners and planners with a better understanding of local need for end of life care services and the competences required in the workforce and
  • model the expected impact of service redesign.

To view the tools, go to End of Life Care Models


Dying Matters Awareness Week, 14–20 May 2012

People across England are being urged to talk more openly about dying, death and bereavement as part of Dying Matters Awareness Week (14–20 May 2012) and to take small actions that can make a big difference at the end of life such as writing a will, registering as an organ donor and letting those close to them know how they would want to be cared for.

The awareness week is organised by the Dying Matters Coalition, which was set up in 2009 by the National Council for Palliative Care to help ensure people get their end of life wishes met. Many of the 16,000 members of Dying Matters, including charities, care homes, hospitals, GPs, hospices, funeral directors and members of the legal and financial professions will be holding events and activities during the week, aimed at encouraging people to talk about end of life issues.

New Comres research for Dying Matters into the attitudes of the public and GPs, showing how British people talk (or don’t talk) about dying, death and bereavement, will be published to coincide with the start of the week on 14 May. National as well as regional findings will be available.

For more information, visit the Dying Matters website.


New report captures the latest information on end of life care in England – the good and the bad

8 May 2012

A report published today by the National End of Life Care Intelligence Network marks a significant moment in the progress of the Department of Health’s 2008 End of Life Care Strategy, which made clear the need to know more about the care people receive in their last year or months of life.

‘What do we know now that we didn’t know a year ago? New intelligence on end of life care in England’ pulls together facts and figures from a wide range of recent studies and surveys that provide an important insight into the pattern of death and dying in England.

The report highlights areas where improvements have been made as well as where further action is needed to improve care for people who are dying. The publication is divided into 16 categories ranging from place of care and death to latest trends in different settings, different disease types, costs, quality of care, workforce and public attitudes.

Read the media release: New report captures the latest information on end of life care in England – the good and the bad

Download the report: What do we know now that we didn't know a year ago?: New intelligence on end of life care in England


End of Life Care: Methods Review

2 May 2012

This review was published by the London School of Economics and Political Science on 27 April 2012. It provides a summary of the various research methods and tools that are used in end of life care research and, their advantages and disadvantages and significance for social care.

It also provides background on a policy and service framework for end of life care research in social care, using examples from relevant research and looks at ethical challenges and practical issues that may arise when undertaking research in this area, with possible answers to these challenges.


New report warns more people are dying from liver disease than ever before

22 March 2012

The number of people dying from liver disease in England is rising, according to the first ever national report on the statistics published today by the National End of Life Care Intelligence Network.

Deaths from liver disease: Implications for end of life care in England describes how there has been a 25% increase in liver disease deaths between 2001 (9,231 people) and 2009 (11,575 people). This is in contrast to other major causes of deaths, which have been declining.

Read the media release: National report warns more people are dying from liver disease than ever before, with the disease being more common in the North and killing more men than women

Download the report: Deaths from Liver Disease: Implications for end of life care in England


A new national information standard published today will ensure co-ordinated end of life care

20 March 2012

The National End of Life Care Programme and the Department of Health have developed a new national information standard. The End of Life Care Co-ordination: Core Content Information Standard will facilitate consistent recording of information by health and social care agencies and, with the consent of the individual, support safe and effective management and sharing of information. Its primary purpose is to ensure the correct and effective use of data within Electronic Palliative Care Co-ordination Systems (EPaCCS).


Route to success 'how to' guide for acute hospitals

28 February 2012

This guide aims to help clinicians, directors and managers implement the route to success more effectively and builds upon the overarching framework set out in the route to success in end of life care – achieving quality in acute hospitals, published in 2010.

Download the guide: Transforming end of life care in acute hospitals - the route to success 'how to' guide


Route to success for ambulance services guide published

28 February 2012

This guide sets out the important role of the ambulance services and is a key tool not only for ambulances services, but also other health and social care providers, professionals, managers and commissioners. The guide includes the challenges and barriers needed to be addressed to achieve high quality care at each step along the end of life care pathway as well as good practice guidelines and top tips.

Download the guide: The route to success in end of life care - achieving quality in ambulance services


Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain

16 February 2012

The PRISMA survey, with cross-national results on the preferences for place of death (including England), has been published in Annals of Oncology. The survey determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. The results show that at least two-thirds of people prefer a home death in all but one country studied.

View the abstract: Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain


Deprivation and death: new report on socioeconomic differences at the end of life

8 February 2012

People who live in deprived areas are more likely to die in hospital than those living in affluent areas, research published today suggests.

The report reveals that 61% of deaths amongst people living in the most deprived quintile (the poorest 20% of areas) occurred in hospital – compared to 54% amongst the two least deprived quintiles.

Read the media release: Report raises questions over equality of access to end of life care community services

Download the report: Deprivation and Death: Variation in place and cause of death


Revised ‘Planning your future care’ guide published

3 February 2012

 An updated version of Planning for your future — a guide, was published on Dignity Action Day (01.02.12) and provides practical advice on how people can engage in advance care planning (ACP) with health and social care professionals and their carers and family.

The guide will encourage and support people to shape the care they receive at the end of their life.

Download Planning for your future care - a guide


Elderly 'suffer as social care spending cut'

30 January 2012

Age UK have today published a new new report which looks at cuts in social care spend. The report, based on offical data plus Age UK's own research, states that the widening funding gap has led to a reduction in service provision and an increase in charges levied by councils for their services and less older people receiving the support they need.

Download the report: Care in crisis 2012

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