See also the Public Health England website.
The Ministry of Justice has released a ‘Guide to coroner services’ which is primarily for bereaved people but others involved in or affected by a coroner investigation or attending a coroner’s inquest may also find it helpful.
View the press release Bereaved families at the heart of the coroner system.
Shaping the National End of Life Care Intelligence Network’s future priorities – complete our survey
It is nearly four years since the National End of Life Care Intelligence Network (NEoLCIN) was established with the aim to improve end of life care data and intelligence. NEoLCIN became part of Public Health England on 1 April 2013. This is an opportune time to reflect on its achievements to date, its impact on end of life care in England and to consider future priorities.
NEoLCIN is carrying out an impact evaluation to inform the work of the network going forward. As part of the evaluation we wish to capture feedback from our stakeholders. A short online survey has been developed for those interested in the work of NEoLCIN.
The survey should take no more than 15 minutes to complete. The deadline for completion is midnight on Friday 28 February 2014.
Access the survey here
Please contact neolcin at phe dot gov.uk link
if you have any questions or require further information.
What do the terms "palliative care" and "end of life care" mean to you?
The National Council for Palliative Care (NCPC) and the Social Care Institute for Excellence (SCIE) are exploring what people think and feel when they hear the terms ‘palliative care' and ‘end of life care'.
The terms ‘palliative care’ and ‘end of life care’ are widely used but don’t always mean the same thing to people. SCIE and NCPC are exploring what people from health and social care and the general public think and feel when they hear the two terms.
In order to support better communication between those who give care and those who receive it, SCIE and NCPC are using a number of methods to gather feedback, including a short, online survey.
Feedback will be used anonymously by NCPC and SCIE to help improve communication with people and their families about death and dying. And the researchers plan to share their initial findings in summer 2014.
Click here to respond to the survey online, or go to the the NCPC website for further information on the project.
National End of Life Care Programme's website has been archived
23 January 2014
The National End of Life Care Programme's website has now been archived.
The work of the National End of Life Care Programme has now come to a close. Responsibility for the website has transferred to NHS Improving Quality (NHS IQ).
You can either:
View the archive website in the UK Government Web Archive, or browse the new NHS Improving Quality site at: www.nhsiq.nhs.uk For further information or enquiries, please contact: enquiries at nhsiq dot nhs.uk link
Next steps for improving end of life care for Black, Asian and Minority Ethnic people in the UK
16 January 2014
Following the publication of our joint report with Marie Curie Cancer Care: Palliative and End of Life Care Needs for Black, Asian and Minority Ethnic Groups in the UK in June last year, Marie Curie Cancer Care launched the Next steps at a Parliamentary event on 15 January. This short report includes detailed recommendations for how health and social care commissioners and providers should incorporate the needs of people from BAME backgrounds in how they plan and deliver services.
Leadership Alliance for the Care of Dying People interim statement published
14 January 2014
The Leadership Alliance for the Care of Dying People (LACDP) has published an interim statement today to provide an update on its work following the report of the independent panel on the Liverpool Care Pathway in July 2013.
The LACDP is a coalition of the national organisations, including Public Health England, to which the panel addressed its recommendations, joined by charities with a strong interest in care for dying people. The Alliance’s aspiration is consistent, high quality care for everyone in the last days and hours of life in England, irrespective of where they are being cared for.
The statement gives an update on the work the Alliance is doing to develop outcomes and guiding principles for end of life care, including engagement with health and social care professionals and the public.
To read the statement, go to the Leadership Alliance for the Care of Dying People web page.
To take part in the engagement on the draft outcomes and guiding principles, go to https://www.engage.england.nhs.uk/consultation/care-dying-ppl-engage
PHE and NHS Improving Quality announce changes to the End of Life Care Co-ordination Information Standard - changes to be implemented by 1 June 2014
10 January 2014
The End of Life Care Co-ordination (EoLCC) National Information Standard (ISB 1580) aims to improve the co-ordination of care through better communication of people’s wishes and preferences for care at the end of life. The standard specifies the core content to be held in Electronic Palliative Care Co-ordination Systems (EPaCCS), or paper-based care co-ordination systems.
Changes have been made to the standard following feedback from implementers and key stakeholders and these have been published by the NHS Information Standard Board.
Public Health England’s National End of Life Care Intelligence Network and NHS Improving Quality have updated the guidance documents to align with new organisational structures and resources.
Download the standard.
Download the guidance documents.
See the news item.
If you have any feedback or comments on implementing the standard or the supporting documentation, please contact firstname.lastname@example.org.
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.