See also the Public Health England website.
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.
New website comparing adult social care services launched
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.