2013 news
Marie Curie Cancer Care Research Programme - Call for application now open
5 December 2013
Marie Curie is spending up to £1 million per year through this programme to fund high quality research that has the potential to improve palliative and end of life care for people with advanced progressive life-limiting conditions and terminal illnesses.
They are introducing a new outline application stage for this call. This will simplify the initial application process for applicants. They are considering applications in three research themes:
1. Pain control at home for patients in palliative care
2. Symptom control at the end of life
3. Addressing the needs of potentially excluded groups at the end of life
For more information and to apply please visit the Marie Curie Cancer Care website. The deadline for outline applications is 17 January 2014.
Marie Curie to lead palliative and end of life care Priority Setting Partnership
5 December 2013
A Priority Setting Partnership being led by Marie Curie has been announced.
People directly affected will get the chance to have their say in setting research priorities for palliative and end of life care. The partnership is particularly seeking to hear from people who are likely to be in the last years of life, current and bereaved carers, their families, and frontline social and healthcare professionals.
Further information visit the National Council for Palliative Care website.
12 November 2013
The Adult Social Care Outcomes Framework (ASCOF) provides robust comparable information on the outcomes and experiences of people who use adult social care, and carers. This document sets out the ASCOF for 2014/15. The framework has been co-produced with local government, with a focus on ensuring that the framework continues to reflect the changing role of local government, and that all measures retain an outcome focus.
The ASCOF, together with the outcomes frameworks for the NHS and public health, aims to support delivery of high quality, seamless care and support, integrated around the needs of the people who use services.
11 November 2013
National Hospice and Palliative Care Organisation has published its 2013 edition of Facts and figures: hospice care in America. The report provides an update on trends and information on growth, delivery and quality of hospice care provision in the USA.
4 November 2013
The proportion of people dying at home or in care homes increased from 38 per cent in 2008 to 44 per cent in 2012, according to a new report on end of life care, What We Know Now, from Public Health England’s National End of Life Care Intelligence Network (NEoLCIN).
This evidence suggests that around 24,000 more people died at home or in care homes in 2012 compared to four years ago, reflecting the desires of many people to stay at home to die.
However, the report also found there were large variations in the proportion of deaths in hospital between 2009 to 2011. Local authorities with highest and lowest rates ranged from 69 per cent in some areas to 38 per cent in others, although the reasons for this are complex.
The report brings together research during the past year from a wide range of research organisations and charities. It looks at the influence of marital status and ethnicity on place of death, patient experience, the role of community and palliative care and many other factors.
Download the report, What we know now 2013
View the media release.
31 October 2013
In July 2013 the independent review of the Liverpool Care Pathway published its report ‘More Care, Less Pathway’. In response to its recommendations, the Leadership Alliance for the Care of Dying People was set up to lead and provide a focus for improving the care for people at the end of life and their families.
As part of this work, the alliance is now keen to hear the views of clinicians, patients, families and carers on the thinking of the alliance around proposed advice to health and care professionals about care in the last days to hours of life. They are running an online survey from 30 October 2013 to 6 January 2014 and welcome your views.
See also the related blog - Improving care in the last days of life - by NHS England's National Clinical Director for End of Life Care, Dr Bee Wee.
6 September 2013
A progress report ‘Supporting people to live and die well: a framework for social care at the end of life’ has been published by NHS IQ and supported by ADASS.
The report disseminates the results of an audit of the framework in action across local authority social services departments and demonstrates how the landscape of health and social care has changed, offering examples of good practice, in how people have been allowed to make more informed choices about their end of life care.
The report will be useful for anyone working in an end of life care capacity or in local authority adult social care.
To download the report, please visit NHS IQ website.
11 July 2013
The Office for National Statistics has today published the second National Bereavement Survey (VOICES) on behalf of the Department of Health. The survey aims to assess the quality of care delivered on the last three months of life for adults who died in England and to assess variations in the quality of care delivered in different parts of the country and to different groups of patients.
For more information on key findings, please see the National Bereavement Survey (VOICES), 2012
Consultation on the national information standard for end of life care coordination – closes 31 July
2 July 2013
The National End of Life Care Intelligence Network (NEoLCIN) has opened a consultation this week.
The consultation asks questions on proposed changes to the national information standard for end of life care coordination (ISB1580). This standard identifies the core content to be held in the Electronic Palliative Care Coordination Systems (EPaCCS) and aims to support communication and coordination of end of life care between the professionals and services delivering care.
EPaCCS users and implementers, IT systems suppliers and other interested parties are invited to comment.
For further information and to access the survey, please visit https://consultations.infostandards.org/isb/eolcc.
The consultation closes on Wednesday 31 July.
Report highlights growing need to improve end of life care for minority ethnic groups
25 June 2013
With Black, Asian and Minority Ethnic (BAME) groups aged 65 and over set to treble in the next 25 years, there is a growing need to rethink how accessible and appropriate end of life care is to people from diverse communities and their families, say palliative care experts.
A report commissioned by Marie Curie Cancer Care and Public Health England from the Cicely Saunders Institute at King’s College London, published today, highlights that the end of life care needs of BAME communities are varied, growing and, despite examples of good practice, overall not adequately met.
A systematic review found that lack of knowledge about services, misunderstandings and mistrust (due to previous experiences of discrimination), and a lack of cultural sensitivity on the part of service providers are identified as some of the reasons for low uptake of end of life care by BAME communities. The report authors say these issues can in part be addressed by improving communication with the patient and their family.
The report recommends that service providers and commissioners recognise the growing need for improved end of life care for BAME communities and that they learn from examples of best practice, some of which are highlighted in the report.
To download the report, please visit Marie Curie Cancer Care website.
To view the news, see the Public Health England website.
To view the Marie Curie Cancer Care media release, please visit www.mariecurie.org.uk
24 June 2013
The Office for National Statistics recently published the National Bereavement Survey (VOICES) on behalf of the Department of Health. The survey aims to assess the quality of care delivered on the last three months of life for adults who died in England and to assess variations in the quality of care delivered in different parts of the country and for different groups of patients.
For more information please see the National Bereavement Survey (VOICES) by Area Deprivation, 2011.
Use of inpatient specialist palliative care services in England increases
19 June 2013
A Public Health England (PHE) commissioned report shows there has been an increase in the availability and use of inpatient specialist palliative care beds in England.
The report, published by the National Council for Palliative Care (NCPC) and Public Health England’s National End of Life Care Intelligence Network, shows that the mean number of patients seen in inpatient units is at its highest level in more than ten years, with the average number of available beds (those that are or can be used) also at a high. The proportion of occupied beds has also remained high at 74.8%, reflecting efficient use of beds, although there are considerable variations across the country.
The report also finds that people receiving specialist palliative care are more likely to be able to die at home – the place where most people say that want to die.
The report also shows that specialist palliative care services have made considerable progress in opening up to non-cancer patients, but that there remains a long way to go.
To download the report, please visit National Survey of Patient Activity Data for Specialist Palliative Care Services
To view the news, see the Public Health England website.
To view the NCPC media release, please visit www.ncpc.org.uk
New report published on end of life care service journey
18 June 2013
A new report developed by Demos for Sue Ryder explores some of the challenges and barriers that prevent people being able to make choices about the kind of end of life care that they receive.
The report highlights the provision in end of life care across the country and some of the inequalities in the service journey from an individual’s perspective through the different services, with varying standards of care.
The report recommends betters partnership between GP, care services and specialist geriatricians, with more training and support for GPs to help them discuss dying and care needs with patients.
Download the report: Ways and Means.
Dying well at home: the case for integrated working
14 May 2013
The Social Care Institute for Excellence have published a guide based on research evidence and studies on what is needed to improve the quality of care to people who are approaching the end of life and wish to be cared for and die in their own homes. It does not cover residents in care homes. The guide is aimed at managers and practitioners supporting people with end of life care needs, but will also help professionals in the health, social care and housing sectors and care staff, who are supporting people and their families at the end of life, as well as policy-makers and local commissioners of end of life care services.
Download the guide: Dying well at home: the case for integrated working.
22 April 2013
Professor Julia Verne of Public Health England, Knowledge and Intelligence (South West) recently presented at the Delivering in inclusive end of life care services that meet the expectations, preference and needs of people from Black, Asian and other Minority Ethnic (BAME) background Workshop. A national workshop which looked at new research relating to the end of life care needs of the BAME population. The presentation was entitled Ethical challenges in end of life care in a pluralist society.
For more information, please see Delivering inclusive end of life care services that meet the expectations, preferences and needs of people from Black, Asian and other Minority Ethnic (BAME) backgrounds flyer
12 April 2013
176 Hospices across England have been awarded a share of £60 million of government funding to improve care environments and settings. Hospices providing end of life care for children and adults will benefit from the funding, which is part of the Capital grant Scheme.
The money will be used to support the care to people in their own homes and invest in patients, their families and carers.
For information on the funding given to individual hospices, see Hospices Funding Breakdown.
11 April 2013
Most patients with cancer prefer to die at home or in a hospice, but hospitals remain the most common place of death (PoD). A population-based study undertaken on behalf of the Guide-Care project examines the changing patterns of place of death of people with cancer and the factors associated with place of death in England between 1993 and 2010 for end-of-life-care improvement.
The study concludes that more efforts are needed to reduce hospital deaths. Health care facilities should be improved and enhanced to support the increased home and hospice deaths. People who are single, widowed, or divorced should be a focus for end-of-life care improvement, along with known at risk groups such as haematological cancer, lung cancer, older age, and deprivation.
Read more on the study: http://www.endoflifecare-intelligence.org.uk/resources/publications/otherpublications#Cancer
5 March 2013
A new report by Help the Hospices and Kings Colleges London seeks ways to help hospices understand future challenges and plan to meet future needs. It reports on UK mortality data, one of the core indicators of the need for hospice care at a population level as well as other UK demographic and epidemiological data showing past trends; present statistics and up-to-date projections. The report provides evidence on people’s expectations and realities in hospice care provision and shows that these factors have important implications for future care planning in order to plan hospice care.
Download the report: Current and future needs for hospice care: an evidence-based report
New report: Deaths from cardiovascular diseases: Implications for end of life care in England
6 February 2013
A new report from the National End of Life Care Intelligence Network highlights how people with cardiovascular diseases are more likely to die in hospital (59%), than people dying from other conditions (51%), with less than 1% of all cardiovascular disease deaths occurring in a hospice.
‘Deaths from cardiovascular diseases: Implications for end of life care in England’ acknowledges that while some of these deaths will be sudden and unexpected, more should be done to ensure that people with cardiovascular diseases can access the end of life care services they need.
Download the media release: Report finds people dying from cardiovascular diseases are more likely to die in hospital.
Download the report: Deaths from cardiovascular diseases: Implications for end of life care in England